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Informal Caregivers of Cancer Patients: Review of Interventions, Care Activities, and Outcomes
Abstract
Family and friends are important resources for patients during cancer treatment and warrant an expanded review of not only what they contribute to patient care but also the support they need and the personal consequences of caregiving. A review of 14 randomized controlled trials published between 2009 and 2016 was completed utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The results of this review expand the scope of what is known regarding relationships among supportive interventions for caregivers, activities performed to care for cancer patients, caregiver characteristics, and health outcomes of caregivers. Specific results include (a) updated synthesis of literature associated with variables important to caregiving, (b) attention to interventions designed to support caregivers
... The work of carers-often partners, parents, siblings, children and friends-is increasingly vital for both those who rely on them and the sustainability of cancer care [1]. Although not always acknowledged, carers are de facto members of the healthcare team [2,3]. Carers' roles are complex and labourintensive, involving the provision of care in the home, community and healthcare settings such as hospitals [2,4]. ...
... Although not always acknowledged, carers are de facto members of the healthcare team [2,3]. Carers' roles are complex and labourintensive, involving the provision of care in the home, community and healthcare settings such as hospitals [2,4]. Carers often act as coordinators of care, navigators of health and welfare systems, decision-makers and providers of clinical care (e.g., administering medications) [2,4]. ...
... Carers' roles are complex and labourintensive, involving the provision of care in the home, community and healthcare settings such as hospitals [2,4]. Carers often act as coordinators of care, navigators of health and welfare systems, decision-makers and providers of clinical care (e.g., administering medications) [2,4]. This can be highly challenging and may involve tasks such as ongoing monitoring of health status and detecting signs of sometimes rapid deterioration. ...
Introduction
Health services rely upon carers to provide care for loved ones with cancer, yet many carers often feel ill‐prepared for this role. Despite a multitude of programmes to support carer mental health, programmes that help carers feel better equipped to support a person with cancer are lacking. This study aimed to address this need by adapting an evidence‐based intervention to be suitable for carers of people with cancer.
Methods
This study used an exploratory, qualitative design consisting of experienced‐based co‐design and an in‐depth stakeholder engagement strategy. An existing evidence‐based programme to promote resilience in the context of providing care was adapted for relevance to carers for people with cancer via two co‐design workshops with carers and healthcare professionals (n = 8). The resulting prototype programme was refined based on stakeholder consultations with staff and consumer members of cancer and carer support organisations across Australia (n = 16). Transcripts of the workshops, meetings and written feedback from carers were thematically analysed.
Results
Major programme developments were guided by three themes that emerged from the co‐design workshops: ‘creating value for carers’, ‘multiple contributors to carer distress’ and ‘the need for flexible implementation’. Analysis of the stakeholder consultation data showed that the themes of ‘diversity in carer journeys’ and ‘creating impact for carers’ were key to further tailoring the programme for applicability to practice. An adapted programme called ‘iCanSupport’ resulted from the process, with key adaptations being more relevant case study scenarios for carers and greater flexibility in accessing and engaging with the intervention to accommodate a range of carer circumstances.
Conclusion
Programmes to build skills for becoming a carer for someone with cancer are absent, yet they are desired by carers. Using co‐design provided a user‐centric approach to adapt an existing evidence‐based programme. Programme evaluation is required to determine the effectiveness of the co‐designed approach in improving carer preparedness among a range of cohorts.
Patient or Public Contribution
Carers and consumers with lived experience and others involved in supporting consumers made valuable contributions to co‐designing and refining the programme in addition to providing ongoing guidance in the unfolding analysis and reporting of this research.
... Given the continuing trend that has transitioned cancer care into the outpatient arena, demands placed on the home-based caregiver are growing in complexity. Compared with other types of informal caregivers, cancer caregivers are significantly more responsible for performing nursing and medical duties, often with limited or no training [9][10][11]. There is growing awareness of the need for cost-effective strategies to support the cancer caregiver [5,9]. ...
... Depending on the type of cancer concomitant with advances in treatment sophistication, patients are receiving increasingly complex treatments. Such treatments may include targeted therapies, immunotherapies, and oral antineoplastic agents that may be initiated in outpatient clinics but with most of the symptom management occurring in the home environment [10,11]. As a disease that profoundly affects families and their community of loved ones, the brunt of supportive care that patients with cancer receive is placed on informal friend and/or family caregivers [7,10,11,14]. ...
... Such treatments may include targeted therapies, immunotherapies, and oral antineoplastic agents that may be initiated in outpatient clinics but with most of the symptom management occurring in the home environment [10,11]. As a disease that profoundly affects families and their community of loved ones, the brunt of supportive care that patients with cancer receive is placed on informal friend and/or family caregivers [7,10,11,14]. Such homebased care includes, but is not limited to, emotional support, communicating with health providers, organizing and/or providing transportation to healthcare appointments, activities of daily living support, medication management, and symptom assessment and management [11]. ...
Home-based informal caregiving by friends and family members of patients with cancer is becoming increasingly common globally with rates continuing to rise. Such caregiving is often emotionally and cognitively demanding, resulting in mental exhaustion and high perceived burden. Support for caregivers may be fostered by engagement with the natural environment. Interaction with nature is associated with mental health benefits such as stress reduction and improved wellbeing. The purpose of this paper was to evaluate the state of the science regarding the use of natural environment interventions to support caregivers of cancer patients in the community. A comprehensive scoping review using the Arksey and O’Malley framework and the Preferred Reporting Items for Systematic Reviews and Meta-analyses assessed natural environment therapies and mental health outcomes among cancer caregivers. Databases searched included CINAHL, PubMed, Scopus, Cochrane, and Alt HealthWatch. Findings recovered a total of five studies over a 10-year period that met criteria, demonstrating a lack of empirical evidence addressing this potential resource to support caregivers. Often, study appraisal was not on nature exposure, but rather other aspects of the projects such as program evaluation, exercise, or complementary therapies. Both qualitative and quantitative designs were used but sample sizes were small. Caregivers experienced beneficial results across the various studies and future work could enhance these findings.
... Therefore, when reviewing the literature it is often best to focus on a specific phase as this review has done the treatment phase. The treatment phase is frequently percieved as the most demanding in terms of physical care, time requirements and uncertainity about long-term outcomes (Frambes et al., 2018;Northouse et al., 2010) With the advance in cancer treatment, cancer patients are often prescribed oral antineoplastic medications, targeted therapy, and immunotherapies that are taken and managed at home (Marshall et al., 2018;Milne et al., 2020). Such home-based care also means that family caregivers are on the front lines of coping with the symptoms presented by the new therapeutics. ...
... Care in the home setting, as opposed to a professional healthcare setting, is becoming the norm (National Alliance for Caregiving, 2018). Informal caregivers often take on the responsibility of assisting cancer patients with tasks of daily living, organising visits and appointments with healthcare providers, complex symptom management, hygiene care, and promoting healthy life style for cancer patients (Badger et al., 2019;Frambes et al., 2018). ...
... Previous studies showed that psycho-educational, skill training, and therapeutic counseling have been the predominant methods used in the caregiver burden interventions. Those interventions were found to have small to medium effects on reducing burden (DuBenske et al., 2014;Frambes et al., 2018;Hendrix et al., 2016;Northouse et al., 2010). ...
Objective
Recent shifts in healthcare delivery and treatment for solid tumour cancer patients have modified the responsibilities of informal caregivers. The objective of this study was to: review informal caregiver burden factors and determine areas where future research is needed.
Methods
The Arksey and O’Malley’s framework and a modified Preferred Reporting Items for Systematic Reviews and Meta-Analyses were used in conducting this review. Research literature was systematically searched using five-electronic databases, including PubMed, PsycINFO, Cochrane, CINAHL, and SCOPUS, and reference lists from included studies to identify publications since 2010. Inclusion criterion was caregivers providing home-based care to a cancer patient.
Results
The search yielded 43 eligible papers of 2119 reviewed, including articles from over 17 countries. Caregiver physical and psychological health, financial strain, and social isolation, as well as limited family and social support continued to be important factors contributing to high levels of caregiver burden. Less recognised factors affecting higher burden included caregivers’ self-esteem, male gender, and the dynamic nature of cancer treatment.
Conclusions
This review updates the state of the science on informal caregiver burden when caring for patients with solid tumour cancers and informs future interventions on how to reduce this burden.
... [5] The role of care is often imposed on family caregivers (FCs) without prior experience and preparation, making them a potentially vulnerable population. [6,7] Imposing the role of the caregiver without preparation and asking for help by FCs interferes with their effective care of the patient and their needs; [8,9] so, the support of caregivers should be considered by health professionals. [10] The results of a study showed that only one-third of caregivers are assessed by a health team for readiness for a caring role, [11] while FCs need support in terms of the type of care, when to seek professional help and how to provide care. ...
... [10] The results of a study showed that only one-third of caregivers are assessed by a health team for readiness for a caring role, [11] while FCs need support in terms of the type of care, when to seek professional help and how to provide care. [3] Frambes et al. [6] pointed out that FCs need psycho-educational interventions, coping skills, and communication techniques to support cancer patients. ...
Background:
Caring for a family member with cancer is a challenging issue for families. Family caregivers often need the help of supportive resources to solve problems in their care role. A deep understanding of the requirements of caregivers to seek help is an effective step toward their ability to use supportive resources. This study aimed to identify and describe the requirements for promoting help-seeking behaviors in Iranian family caregivers of cancer patients.
Materials and methods:
This qualitative study was conducted through in-depth semi-structured interviews with 28 participants selected using purposeful sampling method from 2019 to 2021. An interview guide with general questions about seeking help was used to maintain coherence in data collection. The interviews continued until data saturation. All interviews were recorded, transcribed and analyzed through qualitative content analysis.
Results:
The requirements of promoting help-seeking behaviors in family caregivers were grouped into four main categories: (1) improving social paths toward seeking help, (2) spiritual-psychological-cognitive empowerment toward seeking help, (3) strengthening the motivations behind seeking help, and (4) modifying the perception of cultural barriers to seeking help.
Conclusion:
According to the results of this study, it is expected that by identifying the requirements of caregivers for seeking help and by health stakeholders designing comprehensive programs to address these needs, caregivers will be empowered to use supportive resources and provide a better care role.
... In view of these considerations, interventions are needed to alleviate the burden experienced by caregivers of patients with advanced cancer [14]. According to randomised clinical trials conducted in this area, psychological improvements have been obtained by various types of interventions, such as psychoeducation, skills training, and therapeutic advice [14][15][16][17]. However, in terms of physical and social health outcomes, the benefits observed cannot be directly related to these interventions, and further studies, based on a rigorous methodology, are necessary to clarify the question [14][15][16][17]. ...
... According to randomised clinical trials conducted in this area, psychological improvements have been obtained by various types of interventions, such as psychoeducation, skills training, and therapeutic advice [14][15][16][17]. However, in terms of physical and social health outcomes, the benefits observed cannot be directly related to these interventions, and further studies, based on a rigorous methodology, are necessary to clarify the question [14][15][16][17]. ...
The experience of caregiver burden among family members of patients with advanced cancer is a common problem. The aim of this study was to determine whether the burden may be alleviated by means of a therapeutic approach based on self-chosen music. This randomised controlled trial (ClinicalTrials.gov, NCT04052074. Registered 9 August 2019) included 82 family caregivers of patients receiving home palliative care for advanced cancer. The intervention group (n = 41) listened to pre-recorded, self-chosen music for 30 min/day for seven consecutive days, while the control group (n = 41) listened to a recording of basic therapeutic education at the same frequency. The degree of burden was assessed by the Caregiver Strain Index (CSI), calculated before and after the seven-day intervention. According to this measure, caregiver burden fell significantly in the intervention group (CSI change: −0.56, SD 2.16) but increased in the control group (CSI change: +0.68, SD 1.47), with a significant group x moment interaction F(1, 80) = 9.30, p = 0.003, η2p = 0.11. These results suggest that, in the short term at least, the use of therapy based on self-chosen music alleviates the burden on family caregivers of palliative cancer patients. Moreover, this therapy is easy to administer at home and does not present any problems in practice.
... 8,[27][28][29] However, social network support across multiple activities is difficult to measure, thereby presenting a challenge when attempting to quantify the impact that supplementary emotional support can give. 30 Informal emotional support for caregivers has been studied in less depth than support for patients. 30 One of the challenging features of the supportive care literature is that despite the known need for support, 31 and the evidence that support can be effective, 32-34 the reported use of supportive care services following a referral is low (20-25%). ...
... 30 Informal emotional support for caregivers has been studied in less depth than support for patients. 30 One of the challenging features of the supportive care literature is that despite the known need for support, 31 and the evidence that support can be effective, 32-34 the reported use of supportive care services following a referral is low (20-25%). 31 Little is understood about the contributing factors and reasons why this suboptimal uptake occurs. ...
Introduction:
Emotional support provided by health care professionals (HCPs) for people diagnosed with cancer is associated with improved outcomes. Support via social networks may also be important.
Aims:
To report among a sample of distressed patients and caregivers, (1) the importance attributed to different sources of emotional support (HCPs and social networks) by distressed cancer patients and caregivers; (2) the proportion who indicate they did not receive sufficient levels of emotional support; and (3) potential associations between respondents' demographic and clinical characteristics and reported lack of emotional support.
Methods:
This study utilised cross-sectional data from telephone interviews collected during the usual-care phase of the Structured Triage and Referral by Telephone (START) trial. Participants completed a telephone interview 6 months after their initial call to the Cancer Council Information and Support service and included recall of importance and sufficiency of emotional support.
Results:
More than two-thirds of patients (n = 234) and caregivers (n = 152) reported that family and friends were very important sources of emotional support. Nurses (69% and 42%) and doctors (68% and 47%) were reported very important, while a lower proportion reported that psychologists and psychiatrists were very important (39%, and 43%). Insufficient levels of support were reported by 36% of participants. Perceptions of insufficient support were significantly associated with distress levels (p < .0001) and not having a partner (p = .0115).
Conclusion:
Social networks, particularly family, are an important source of emotional support. Higher levels of distress, those without partners, and caregivers may require targeted interventions to increase their access to emotional support.
... A low level of perceived social support in cancer patients resulted in a significantly higher level of depression, lower scores on all functional scales, higher scores on all symptom scales, and lower scores on the overall health and quality of life scale. Perceived social support reduced the adverse psychological effects of treatment [9,10]. ...
... Frambes et al. noted that the lack of identification of support may contribute to the occurrence of anxiety and depression [9]. Langbecker found that addressing barriers to seeking help can improve the bio-psychosocial well-being of patients [28]. ...
Social support can be one of the main factors in better assessing the quality of life at any stage of the recovery process. It should meet the patient’s needs so that they can develop constructive methods of coping with the disease. In order to explain the factors influencing social support for cancer patients, a theoretical research model was formulated. It is presented in a graphic form in this article. In order to verify the model, the authors’ questionnaire and other standardised questionnaires were used. The experimental group consisted of 170 hospitalised oncological patients being treated for cancer. Personality structure, through its relationship with state of health (0.40) and attitude developed to the disease (0.64), influenced the support experienced by the treated patients (0.40). The surveyed patients, who were characterised by positive self-esteem and experience of life satisfaction despite various difficult situations, perceived to a greater degree the emotional and instrumental support provided to them. During cancer treatment, those patients who showed a need for help and did not experience negative emotions were characterised by an increased need for support. The research results can be introduced into evidence-based medical practice, which could significantly improve the quality of nursing and medical care for patients.
... Today, online communication provides a platform for caregivers to access to convenient mutual support on a flexible schedule and beyond proximity compared with offline support. It is particularly important for caregivers for ADRD patients because these caregivers often almost need to care for their patients around the clock (Ferell & Wittenberg, 2017;Frambes, Given, Lehto, Sikorskii & Wyatt, 2018). ...
... Namkoong et al. (2012) demonstrate that online support groups for cancer caregivers had positive effects on cancer caregivers' appraisal and coping strategies. More recent reviews of caregivers of cancer patients have been documented in Ferell & Wittenberg (2017) and Frambes, et al. (2018). Dutta & Feng (2007) detail the benefits of online communities for caregivers, arguing that online communication is more flexible in terms of time and location than offline interactions. ...
... Given the relevance of relationships and affective bonds at the end of life, palliative care has highlighted the importance for the patient-caregivers dyad to be at the center of care. 7,8 Caregivers are a fundamental resource for patients. They usually have a greater awareness of the clinical picture than the patient; therefore, their impact on the decisions regarding the care and treatments is profound. ...
... They usually have a greater awareness of the clinical picture than the patient; therefore, their impact on the decisions regarding the care and treatments is profound. 7,9,10 With regard to the role played by health-care providers (HCPs), research has shown how their personal issues, needs, and traits have an influence on the care. 11,12 Thus, it is necessary to explore the personal perspectives of FCs and HCPs, that, aside from the relationships with the patient, influence the care and their role in promoting or hindering aspects of the care, such as the spiritual and the existential ones. ...
The concept of a good death is crucial in palliative care, but its relationship with attitudes toward death and feelings of interconnectedness needs to be further deepened. The first aim of this study was to explore the concept of good death, attitudes toward death, and feelings of interconnectedness among family caregivers (FCs) and health-care providers (HCPs) of terminally ill patients with cancer. The second aim was to analyze associations of good death concept with attitudes toward death and feelings of interconnectedness. Participants were asked to assess the importance of features that characterize a good death. To explore each person’s attitude toward death and feelings of interconnectedness, 3 open questions were used. The sample consisted of 49 participants: 24 (48.98%) FCs and 25 (51.02%) HCPs. Nine good death features were considered essential by more than 70% of participants. These referred to the physical (eg, symptoms control), social (eg, loved ones’ presence), emotional (eg, sharing emotions), and spiritual (eg, inner peace) dimensions. Importance attributed to components of a good death such as patient’s awareness and acceptance of death, meaning, respect for the patient’s wishes, and inner peace were found to be associated with lack of avoidance and acceptance toward death and feelings of interconnectedness. Given the importance of FCs and HCPs in providing care and their impact on the patients’ dying process, it is necessary to reflect upon how their personal attitudes and previous experiences influence the care of dying patients.
... Family and friends often play an important role in providing support and care to people diagnosed with cancer [1]. Although providing care can be rewarding and foster stronger relationships between the caregiver and care recipient, it can also be stressful and burdensome, and result in negative health outcomes for the caregiver [2]. ...
Background/aims
Social connectedness is increasingly recognised as influencing health outcomes in cancer caregivers; however, there is little understanding of factors which foster feelings of social connectedness among caregivers when providing care. We sought to examine from the caregivers’ perspective, factors which contribute to perceived social connection when providing care to someone with cancer.
Methods
Semi-structured interviews were conducted with 20 caregivers of people with cancer. Participants were recruited through social media and were eligible if they were aged 18 + years and had provided care to someone with cancer in the preceding 3 years. Data were analysed thematically using NVivo.
Results
Following thematic analysis of interview data, six overarching themes emerged detailing caregivers’ experiences with social support, networks, and connectedness. Themes included: people in caregivers’ social networks and communication frequency, supportive communication with people in social networks, challenges with talking with others and seeking support, receiving instrumental support from social networks, impact of the carer role on friendships and community activities, and factors which fostered perceived connectedness.
Conclusions
For caregivers of people with cancer, our qualitative findings suggest the importance of receiving emotional and instrumental support from social networks to cope with, and alleviate the stress and strain of providing care. Development and empirical testing of strategies and interventions that improve social support seeking and subsequently perceived connectedness among caregivers are recommended to improve health and wellbeing.
... Providing caregivers with information on their vital role in cancer treatment can help increase their visibility as key care team members, ease the transition from a relationship-based role to an active caregiving one, and subsequently encourage caregivers to use support resources early. Studies have shown that supporting caregivers through early interventions like psychoeducation and skills development (e.g., coping, problem-solving) positively affects caregiver psychological well-being and, in turn, patient quality of life [7,37,38]. ...
Objective
Caregivers play crucial roles in cancer treatment and outcomes. However, little is known regarding how caregivers support patients during cancer clinical trials. The aim of this study was to gain insight into the caregiver experience of rural and urban patients enrolled in cancer clinical trials.
Methods
As part of a quality improvement study, 21 patient–caregiver dyads were interviewed using closed and open‐ended interview questions. We analyzed quantitative and qualitative data on patient and caregiver perceptions of caregiver contributions and explored differences in the reported caregiving experience between rural and urban participants.
Results
While patient–caregiver dyads showed significant disagreement in the symptoms/medication management domain, with caregivers tending to acknowledge the contribution while patients did not (χ² (1, 21) = 5.82, p = 0.016), both groups generally showed agreement in their perceptions of caregiver involvement and reported similar levels of involvement across the other six assessed domains. Qualitative analysis revealed three themes: patient independence, invisible support, and accepted forms of support. Despite patients valuing independence, patients benefited from caregivers' unseen support, and providing emotional support and attending appointments were widely accepted forms of support among patients. No meaningful differences in caregiver contributions were found between rural and urban patient–caregiver dyads.
Conclusion
Our study revealed that caregivers are assisting patients in often unseen and underestimated ways during cancer clinical trials, highlighting their multifaceted role. Cancer clinical trials should implement a family‐centered approach, especially for rural caregivers, to enhance patient retention and outcomes.
... Though many oncology-specific caregiving interventions have been developed in recent years [8,9], few align with practice recommendations and policies seeking to systematically integrate caregivers into care [10]. Specifically, as early as 2001, recommendations emerged to integrate caregivers in older adult care to improve patient outcomes [11,12]. ...
Background
The engagement of family caregivers in oncology is not universal or systematic.
Objective
We implemented a process intervention (ie, patient-caregiver portal system) with an existing patient portal system to (1) allow a patient to specify their caregiver and communication preferences with that caregiver, (2) connect the caregiver to a unique caregiver-specific portal page to indicate their needs, and (3) provide an electronic notification of the dyad’s responses to the care team to inform clinicians and connect the caregiver to resources as needed.
Methods
We assessed usability and satisfaction with this patient-caregiver portal system among patients with cancer receiving palliative care, their caregivers, and clinicians.
Results
Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Further, 60% (n=12) of patients indicated a preference to communicate equally or together with their caregiver. Caregivers reported high emotional (n=9, 47.3%), financial (n=6, 31.6%), and physical (n=6, 31.6%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6%, 13/15 who completed the user experience interview) and caregivers (94%, 16/17 who completed the user experience interview) were satisfied with the system, while, of the 6 participating clinicians, 66.7% agreed “quite a bit” (n=1, 16.7%) or “very much” (n=3, 50%) that the system allowed them to provide better care.
Conclusions
Our findings demonstrate system usability, including a systematic way to identify caregiver needs and share with the care team in a way that is acceptable to patients and caregivers and perceived by clinicians to benefit clinical care. Integration of a patient-caregiver portal system may be an effective approach for systematically engaging caregivers. These findings highlight the need for additional research among caregivers of patients with less advanced cancer or with different illnesses.
... Short report hands-on basic care, symptom management, medication administration, healthcare team interactions, financial responsibilities and emotional support. 2 Hospice CGs in particular may experience heightened emotional distress and lowered quality of life (QOL) as they care for a family member nearing death. 1 While it is recognised that supportive self-care interventions are needed to bolster hospice CGs capacity to manage their myriad stressors, demands associated with homebased caregiving may lessen the capacity to travel and to engage in time-intensive interventions. Thus, it is imperative that convenient and accessible tools are available that strengthen informal CGs well-being and QOL. ...
Objectives
Hospice family caregivers (CGs) may experience poor emotional health and diminished quality of life (QOL) secondary to stressors that accompany home-based end-of-life caregiving. Innovative flexible strategies are needed to support hospice CGs in their homes. Being outdoors in nature enhances well-being but is often not accessible to home-based CGs. The purpose was to evaluate the feasibility/acceptability, and preliminary emotional health and QOL outcomes of a 5-day nature-based virtual reality (VR) intervention.
Methods
A pre–post design was used. Hospice CGs engaged in self-selected 10 min nature experiences via VR headset over 5 days. Preintervention surveys included demographics and the PROMIS-29 QOL measure (physical/social function, anxiety/depressive symptoms, fatigue, sleep and pain). Postintervention surveys included acceptability/feasibility surveys, PROMIS-29 and a VR-related symptom checklist. Data analysis included descriptives and paired t-tests.
Results
15 CGs (mean 61.13±12.47 years; 12 females) completed the study. Findings demonstrated high acceptability (14.46±1.77; range 0–16); feasibility (13.93±2.43;range 0–16). Adverse VR symptoms were minimal. PROMIS-29 overall scores were significantly improved following the 5-day intervention (pre: 66.33±8.47; post: 61.07±7.83,p=0.01). Paired t-tests showed significant pre–post changes in anxiety (t=2.206, p<0.05) and favourable trends on other QOL dimensions.
Conclusions
Feasibility/acceptability and QOL data support further testing of VR nature immersive experiences in the home environment with larger more diverse representative samples.
... Numerosas intervenciones psicosociales para tales CPI han tratado de mejorar los síntomas asociados a la enfermedad del paciente, favorecer la comunicación entre este, su familia y el equipo de salud, y promover el acceso del CPI a los recursos de la comunidad y del sistema de salud (Applebaum y Breitbart, 2013;Frambres et al., 2017;Northouse et al., 2010;Waldron et al., 2013). Son escasos los estudios sobre el bienestar y la salud de las CPI, especialmente en las condiciones socioeconómicas y culturales de los países en vías de desarrollo, como es el caso de México. ...
Asumir y efectuar los cuidados de los pacientes con padecimientos crónicos que ya no pueden responder a intervenciones curativas −es decir, en cuidados paliativos−, representa una carga emocional y conductual excesiva para quienes otorgan esos cuidados, lo que tiene diversas implicaciones cognitivas y efectos muy dañinos en su salud. En los países en vías de desarrollo, tal responsabilidad suele recaer en sus familiares, quienes no reciben retribución económica alguna y que se exponen a todos los estresores generados por tal situación, con graves efectos negativos en su adaptación psicológica y salud física. El presente estudio da cuenta de una intervención cognitivo-conductual en cuidadoras de pacientes en cuidados paliativos de un hospital público de Ciudad de México. Los resultados revelaron mejorías de modestas a considerables en varias conductas de autocuidado de las participantes. Los principales hallazgos se discuten en el contexto de las necesidades institucionales no cubiertas, de las recomendaciones para el diseño y administración de las intervenciones, y de las precauciones metodológicas que deben tomarse en cuenta en estudios futuros.
... Cancer, especially in the advanced stages, increases the need for support in many fields, with informal caregivers (ICs) taking on this role in many countries. These people are relatives, friends, and neighbors who provide unpaid practical, day-to-day support to a person who is unable to carry out their daily activities (Frambes et al., 2018). Individuals with advanced PC typically have a variety of symptoms that ICs are trying to manage and needs that will likely increase over time. ...
Purpose
The purpose of the present study was to explore informal caregivers’ experiences of supporting family members with pancreatic cancer.
Methods
A qualitative descriptive study was conducted with individual semi-structured telephone interviews and inductive thematic analysis. Data were collected from 10 informal caregivers in the only cancer hospital in Northern Greece.
Results
The findings of the thematic analysis highlighted three themes, “supportive needs of patients with pancreatic cancer”, “supportive needs of informal caregivers” and “evaluation of provided care”. In the first theme, four individual subcategories of themes emerged: “psychological support”, “managing symptoms and side effects”, “daily activities” and “participation in decision-making”. The theme “supportive needs of informal caregivers” consists of five sub-themes, “psychological support”, “support in care activities”, “financial support”, “communication with the patient” and “information”. Finally, the theme “evaluation of provided care” three sub-categories of topics were reported, “staff evaluation”, “process evaluation” and “palliative care”.
Conclusion
Pancreatic cancer patients and their informal caregivers experience multiple unmet needs. The health system, lacking an efficient treatment for this type of cancer, should provide a basis for improving the quality of life of these families with targeted support interventions.
... Advances in cancer treatment, has shifted the focus from short-term institutional care to long-term informal caregiving at home, wherein caregivers have a larger role to play (Bradley, 2019;Junkins et al., 2020;Kusi et al., 2020). Breast cancer, like other cancers, could result in a sudden deterioration of health or acute sufferings as a consequence of the treatment itself, giving rise to intense and time-consuming caregiving (Benyo et al., 2022;Bhattacharya & Chatterjee, 2020;Frambes et al., 2018; RESEARCH ARTICLE Maree et al., 2018). Additionally, in low resource-settings, with poor healthcare infrastructure, the chance of out-ofpocket expenditure is high and this coupled with factors such as stigma and a concern of increased mortality gives rise to a fear of the disease further burdening the caregiver (Alexander et al., 2019;Kusi et al., 2020;Nyblade et al., 2017). ...
Background:
This study was conducted to explore the prevailing perceptions and experiences of caregiving burden among informal caregivers of women living with breast cancer in South India.
Methods:
In-depth interviews were conducted among breast cancer care-receivers (n=35) and their informal caregivers (n=39) and a thematic analysis was used to analyze the data. Informal caregiver in the context of this study was defined as one who takes up the responsibility of an informal caregiving role, and were either self-identified or acknowledged by the care-receivers.
Results:
Four main inductive themes in the domains of: emotional culpability, financial and workplace liability, psychosocial affliction, physical strain and health system demand were identified, that were associated with caregiver burden.
Conclusion:
Informal caregivers form an integral part of the cancer care continuum in India. It is recommended to factor in the identified themes while developing a caregiver needs assessment model in the context of caring for breast cancer patients in the Indian setting.
... This will reduce the quality of life of caregivers, thereby affecting the quality of their care for the patients. 7,8 Therefore, paying attention to caregivers' quality of life and helping them to maintain healthy physiological and psychological states and good social adaptability can promote the recovery of patients, improve the quality of life of family caregivers and reduce the need for medical treatment. 9 However, there are limited studies on the quality of life of family caregivers of elderly MHD patients. ...
Objective
To investigate the correlation between the frailty status of elderly patients on regular haemodialysis and the quality of life of their family caregivers.
Methods
90 elderly patients with regular haemodialysis and 90 family caregivers of the respective patients were selected from January 2020 to April 2021. The influencing factors of the caregivers’ quality of life and correlation between patient debility and caregiver quality of life were analyzed by general information questionnaire, Tilburg debility index scale, self-care ability scale, family caregiver-related quality-of-life scale and social support scale.
Results
The quality of life of the family caregivers of elderly patients on regular haemodialysis is at the medium level (4.50 ± 2.96). Multiple linear stepwise regression analysis shows that the ability of patients to take care of themselves, the degree of patients’ weaknesses, whether they care for non-dialysis patients, the time to care for patients, social support and the type of current residence have significant impacts on the quality of life of the caregivers (p < 0.001). Variance analysis showed that the fitting degree of linear regression equation is relatively high, and the regression equation is significant (F = 9.195, p < 0.001, R = 0.595, R² = 0.315). The quality of life of caregivers is positively correlated with the ability of the patients to take care of themselves, the length of care, social support and type of current residence (p < 0.05). The degree of weakness in patients is negatively correlated with taking care of non-regular dialysis patients (p < 0.05).
Conclusion
The ability of patients to take care of themselves, the degree of weakness of the patients, social support and the type of current residence are the influencing factors of the burden on the family caregivers of maintenance haemodialysis patients.
... Several published reviews have presented the different types of interventions available for cancer patient caregivers. For example, Frambes et al. (2018) in their review focused on how different types of supportive interventions (such as psychoeducation, skill development training and counselling), specific caregiving activities and the outcomes of caregiving are related. The authors revealed that caregivers' experiences can positively impact caregiver health outcomes and strongly support their ability to take care of their loved ones. ...
Aim
The aim of this study was to determine what kind of psychosocial interventions aimed at improving the well‐being of adult cancer patient caregivers were developed, and to describe the methodological characteristics and clinical effectiveness of the interventions which could be included in the nursing care plans.
Design
Systematic review
Data sources
A systematic search of three databases (PubMed, CINAHL, and PsycINFO) was conducted to identify peer‐reviewed papers published between years 2004–2019.
Review Methods
The review was guided by the Joanna Briggs Institute manual for systematic reviews. Data were extracted and appraised by three reviewers using standardized checklists. Narrative synthesis was used to analyse the data.
Results
A total of 37 studies underwent analysis. Most of the studies described psychoeducational interventions, designed for patient‐caregiver dyads, delivered face‐to‐face. There was a great variety in caregiver outcomes and measurement tools used. Even though most studies used a randomized controlled design and standardized intervention protocols, many reported problems with recruitment and attrition. Most studies reported that the intervention improved caregiver outcomes, yet the majority of them failed to report effect sizes.
Conclusion
There are currently a plethora of successful interventions available for cancer patient caregivers which can be included to the nursing care plan. Psychoeducational online interventions which include a social support component may have the best potential in supporting caregivers. It is important to address specific caregiver needs at different cancer stages rather than general needs of caregivers in future interventions.
Impact
This review suggests that despite a large number of different interventions which can be included in the nursing care plan to improve the support offered to caregivers, some issues should be addressed while designing an intervention study. The emphasis should be placed on reporting effect sizes, focusing on specific caregiver needs and improving recruitment, retention strategies and sustainability of caregiver interventions.
... These include, but are not limited to, assisting with transportation to and from the clinic/hospital, helping to manage symptoms of treatment, providing emotional support, and navigating a complex healthcare system. 8,9 These new and complex obligations and role adjustments have been found to be detrimental to FCs' health. For example, FCs of adults with cancer have an increased risk of developing comorbid conditions such as cardiovascular disease. ...
Background:
Informal family caregivers (FCs) of adults with various diseases including hematologic malignancy (HM) experience low quality of life and psychological well-being. Although HMs are life-threatening cancers associated with high mortality, numerous symptoms, and lengthy hospitalizations and are therefore likely to be challenging for FCs to cope with, there is scant research exploring FC experiences.
Objective:
The aim of this styudy was to describe the coping and adaption of FCs of patients during diagnosis and treatment of HM.
Methods:
This study used a qualitative descriptive design to analyze semistructured interview responses from FCs (N = 28) within 3 months of the patients' HM diagnosis. A content analysis was conducted to generate common themes.
Results:
Family caregivers endorsed adaptive and maladaptive coping. Adaptive strategies included taking one day at a time, spirituality, engaging in pastimes, and utilizing emotional and instrumental family and community support. Maladaptive coping included wishful thinking, harmful habits, avoidance, and lacking or being unable to accept family and community support.
Conclusions:
Findings highlight the complexities of caregiver burden as they support their loved ones with HM.
Implications for practice:
Family caregivers would benefit from receiving an interdisciplinary family-centered approach as their HM person is initiating treatment. Nurses should consider assessing the FCs' psychosocial needs to help facilitate appropriate services, such as palliative care consultations, social work referrals, support groups, and/or counseling.
... Previous interventions for partner caregivers of patients with cancer Previous interventions have largely targeted informal caregivers in general, which include family members and friends. 11 We found three systematic reviews [11][12][13] and two metaanalyses 14 15 that summarised the literature ...
Introduction
Intimate partners of patients with cancer often experience significant distress, but there is a lack of psychological interventions that specifically target this population. ‘Resilient Caregivers’ is a novel resilience-based intervention for distressed partner cancer caregivers. The intervention was developed according to a resilience framework focusing on meta-reflective skills, coping strategies and value clarification. The aim of this study is to evaluate the effectiveness of this intervention in a randomised trial.
Methods and analysis
Eighty participants will be invited through the Oncology Department at Herlev Hospital, Denmark and randomised to either the intervention or usual care. Participants are eligible if they are partners (married or unmarried) of patients diagnosed with cancer and experience distress (>4 on the distress thermometer). ‘Resilient Caregivers’ consists of seven manualised group sessions (2.5 hours each), focusing on resilience in relation to being a partner caregiver of a patient with cancer. The primary outcome is symptoms of anxiety, while secondary outcomes include distress, depression, quality of life, sleep quality and resilience. Data will be collected at baseline, 3, 6 and 12 months follow-up using validated scales, and analysed using mixed models for repeated measures.
Ethics and dissemination
This study will follow the ethical principles in the Declaration of Helsinki and has been reviewed by the Ethics Committee of the Capital Region of Denmark (Journal no. 18055373). Written informed consent will be obtained from all participants. Results will be reported through scientific peer-reviewed journals and relevant conferences.
Trial registration number
NCT04610034 .
... Family-based caregivers are patients' spouses, siblings, children, parents and friends. They experience substantial emotional distress due to their loved one experiencing cancer; this experience is compounded by the responsibility of providing clinical and healthrelated care, which impacts caregivers' well-being, the safety of care and care outcomes [1]. Advancements in cancer treatment and home-based supportive care means that increasingly, treatment and care is supported by families at home rather than by health professionals [2,3]. ...
Background
Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations.
Methods
Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach.
Results
Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role.
Conclusion
Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.
... Further, preliminary research suggests that dyadic physical activity interventions for cancer survivors and their partners are efficacious [23][24][25][26]. However, most cancer-related exercise programs thus far have been designed exclusively for cancer survivors, and interventions that have included cancer caregivers have largely focused on psychoeducation, skill development, and counseling rather than behavioral modification or exercise adoption [20,27]. Therefore, cancer caregivers may not have adequate access to physical activity programs, or they may perceive that exercise is more important for survivors than for themselves. ...
Purpose
Physical activity is associated with improved health outcomes for cancer survivors and their romantic partners, yet it is unclear if joint exercise programs for survivor-partner dyads are acceptable. This study examined demographic, relationship, exercise, and cancer history correlates of survivors’ and their romantic partners’ couples-based exercise beliefs and their preferences for program designs.
Methods
All participants (survivors n=209, partners n=155, couples n=143) completed an online survey. Correlations and linear regression analyses were used to examine correlates of participants’ importance of and interest in couples-based exercise and their likelihood of joining a couples-based exercise program. Intraclass correlations estimated shared variance at the couple level.
Results
Most participants believed that couples-based exercise was highly important (51.8%) and were interested in a couples-based exercise program (61.5%), but fewer survivors believed their partner would be interested or would likely join a couples-based program. Across all outcomes, partner support for exercise was most strongly associated with participants’ couples-based exercise beliefs (r = 0.19–0.54, p<.05), and couples were significantly aligned in their beliefs (ρ=0.20–0.31, p<.01). Participants were interested in exercise programs involving exercising together (67.3%) as well as exercising separately while sharing activity data on an app or website (48.0%).
Conclusions
This novel understanding of couples-based exercise beliefs provides a strong foundation upon which future exercise programs may be designed for survivors and their romantic partners.
Impact for Cancer Survivors
Survivors’ adoption and maintenance of exercise may be enhanced by the inclusion of romantic partners in exercise programs, and partners’ inclusion is appealing to couples.
... De manière générale, ceci corrobore la présence d'une inégalité certaine dans la mobilisation des services de soins de support, aussi bien pour les patients que pour les proches-aidants en France (Delepau et al., 2018 ;Regnier-Denois, Querre, Chen, Barrault, & Chauvin, 2017 Dans la littérature, la majorité des interventions à destination des proches-aidants semble répondre globalement aux principaux besoins mis en évidence. Ces interventions visent le plus souvent à soutenir les proches-aidants dans les activités de soins pour les patients en utilisant la psychoéducation à propos de la maladie du patient, l'amélioration des compétences de coping, de communication et de résolution de pro-blèmes, et des conseils concernant la façon de réagir face à la prise en charge du patient (pour revue, Frambes, Given, Lehto, Sikorskii, & Wyatt, 2018). Cependant, les interventions montrent des effets variables selon les études. ...
Cet ouvrage s’inscrit dans la longue tradition de diffusion des connaissances et travaux des chercheurs et praticiens de la psychologie de la santé par l’Association Francophone de Psychologie de la Santé (AFPSA). Il fait suite au 10e congrès de l’association qui s’est tenu à Metz en 2018 et qui avait pour thème "Pratiques et interventions en psychologie de la santé". Les quatorze contributions qui constituent cet ouvrage sont autant d’illustrations originales de la diversité des champs de recherche et d’applications développés par les chercheurs et praticiens en psychologie de la santé.
... Given evidence that caregiving impacts diverse factors that influence caregivers' quality of life (Geng et al., 2018;Liu et al., 2019;Or & Kartal, 2019;Zavagli et al., 2016), it would be informative to comprehensively assess behaviors, attitudes, and symptoms that play a role in caregivers' health and psychosocial well-being. Moreover, much of what is known regarding the well-being of care providers is derived from studies predominately exploring the experiences of informal caregivers to children with developmental disabilities and informal caregivers to individuals with cancer (Frambes et al., 2017) or with Alzheimer's disease and other dementias (Tang et al., 2019). The extent to which existing findings regarding informal caregivers' needs and experiences generalize to other populations such as those caring for individuals impacted by strokes, brain injuries, or spinal cord injuries is limited. ...
The aim of this study was to describe the psychological and physical health needs of informal caregivers in a rehabilitation hospital and explore differences related to informal caregiver and care recipient characteristics. Readiness to engage in health promotion and perspectives on mindfulness meditation were assessed. Informal caregivers ( N = 33) to patients receiving inpatient or outpatient treatment completed the Multidimensional Health Profile screening tools. Readiness to change was assessed using the readiness ruler approach. Almost half of participants (45.5%) had a chronic illness and 18.2% reported that it interferes with daily functioning. Low Positive Health Habits were reported by 43% of participants, and Negative Health Habits were reported by 25%. A subgroup (15%–20%) reported both physical and mental health concerns. A majority of participants indicated it was both very important for them to improve their physical and mental health and felt very confident they could do so. Receptivity to mindfulness meditation was high, with 72.7% reporting an interest. Comprehensive screening and counseling interventions to address the physical and mental health of informal caregivers in physical rehabilitation hospital settings are needed, and information gained from screening could be addressed in interventions delivered by systems-oriented rehabilitation counselors. A mindfulness meditation intervention may be a useful strategy for promoting well-being in this population.
... While there is no clear consensus on the definition of a caregiver [1], caregivers often routinely provide assistance and support of both a physical and a psychological nature, to a family member or friend with an illness or disability. A caregiver self-identifies and is usually also identified by the patient as playing an instrumental role in providing support [2][3][4][5][6]. ...
Purpose:
Caring for a person diagnosed with cancer is associated with elevated distress that may impact on caregiver health and patient outcomes. However, caregivers' distress is relatively under-researched. This Australian study explored a range of caregivers' reported sources of distress.
Methods:
The grounded theory approach informed semi-structured interviews that were conducted with a purposive and broad range sample of distressed caregivers identified through the 'Structured Triage And Referral by Telephone' (START) trial. A grounded theory framework was used to generate themes with data analysed by two independent coders using the NVivo software.
Results:
Caregivers (n = 14) were aged from 25 to 80 years, including two bereaved caregivers. The relationships of the caregivers to the patients were as follows: partner (n = 8), parent (n = 1), child (n = 3), sibling (n = 1), and friend (n = 1). Six major themes emerged in relation to sources of distress: (1) a lack of sufficient and timely information; (2) uncertainty; (3) the role and duties of caregiving; (4) lack of family-centred services; (5) practical challenges; and (6) impact of distress.
Conclusion:
Caregivers face a number of specific challenges beyond those experienced by patients. It is essential to ensure that caregivers are actively well-informed and well-supported alongside the person who is diagnosed with cancer.
... Some studies show that, compared with non-caregivers, caregivers often suffered from psychological, behavioral, and physiological effects that can contribute to impaired physical and psychological status because of caring [57,58]. They have to pay extra time and experience and even modify their lifestyle to meet their recipients' demands, including limiting leisure activity, reducing the time on outdoor activities, and leaving little time on performing health assessments [59,60]. Many family caregivers had to take leave from work to care for older adults and even resigned, but in this way the economic burden of the family would increase sharply [61,62]. ...
Background:
Chronic pain is a major health problem among older adults and their informal caregivers, which has negative effects on their physical and psychological status. The dyadic pain management program (DPMP) is provided to community-dwelling older adults and informal caregivers to help the dyads reduce pain symptoms, improve the quality of life, develop good exercise habits, as well as cope and break the vicious circle of pain.
Methods:
A pilot randomized controlled trial was designed and all the dyads were randomly divided into two groups: the DPMP group and control group. Dyads in the DPMP group participated in an 8-week DPMP (4-week face-to-face program and 4-week home-based program), whereas dyads in the control group received one page of simple pain-related information.
Results:
In total, 64 dyads participated in this study. For baseline comparisons, no significant differences were found between the two groups. After the interventions, the pain score was significantly reduced from 4.25 to 2.57 in the experimental group, respectively. In the repeated measures ANOVA, the differences in pain score (F = 107.787, p < 0.001, d = 0.777) was statistically significant for the group-by-time interaction. After the interventions, the experimental group participants demonstrated significantly higher pain self-efficacy compared with the control group (F = 80.535, p < 0.001, d = 0.722). Furthermore, the elderly increased exercise time significantly (F = 111.212, p < 0.001, d = 0.782) and reported developing good exercise habits.
Conclusions:
These results provide preliminary support for the effectiveness of a DPMP for relieving the symptoms of chronic pain among the elderly.
... Caregivers, including family and friends, endure significant distress as they witness their care recipient struggle with a cancer diagnosis and the decision to undergo surgery [8,9]. Supporting a care recipient through surgery not only causes considerable disruptions in the caregiver's personal life but also leads to deteriorations to their overall well-being [10]. ...
Background
Older adults undergoing cancer surgery are at greater risk for poor postoperative outcomes. Caregivers also endure significant burden. Participation in perioperative physical activity may improve physical functioning and enhance overall well-being for both patients and caregivers. In this study, we assessed the feasibility of a personalized telehealth intervention to enhance physical activity for older (≥ 65 years) gastrointestinal (GI) and lung cancer surgery patients/caregivers.
Methods
Participants completed four telehealth sessions with physical therapy/occupational therapy (PT/OT) before surgery and up to 2 weeks post-discharge. Outcomes included preop geriatric assessment, functional measures, and validated measures for symptoms and psychological distress. Pre/post-intervention trends/trajectories for outcomes were explored.
Results
Thirty-four patient/caregiver dyads (16, GI; 18, lung) were included. Accrual rate was 76% over 8 months; retention rate was 88% over 2 months. Median for postop of a 6-min walk test, timed up and go, and short physical performance battery test scores improved from baseline to postop. Participant satisfaction scores were high.
Conclusion
Our conceptually based, personalized, multimodal, telehealth perioperative physical activity intervention for older patient/caregiver dyads is feasible and acceptable. It offers an opportunity to improve postoperative outcomes by promoting functional recovery through telehealth, behavior change, and self-monitoring approaches.
Trial registration
ClinicalTrials.gov Identifier: NCT03267524
... Most of these are however, targeted at optimizing the delivery of patient care by informal caregivers rather than at supporting these caregivers (Rowland et al., 2017;Ugalde et al., 2019). The limited implementation of support initiatives and measures is likely related to a weak evidence basis, difficulties in targeting caregivers' specific and variable needs, and challenges in identifying a group for targeted intervention (Frambes et al., 2017;Kent et al., 2016). We accordingly set out to investigate the perceived burdens and needs of caregivers by conducting focus group interviews with individuals participating in a non-profit online community for peer-to-peer support. ...
This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Three themes were identified: setting aside one’s own needs, assuming the role of project manager, and losing one’s sense of identity. Together they form the framing theme: being co-afflicted. The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.
... Family caregivers assess their perceived ability to provide care to their care recipient according to how beneficial, personal, and helpful they are (Bevan, Jupin, & Sparks, 2011;Frambes, Given, Lehto, Sikorskii, & Wyatt, 2018). Perceived quality of care, also known as caregiver mastery or "one's self-efficacy as a caregiver" (Hanks, Rapport, & Vangel, 2007, p. 44), is linked to multiple beneficial caregiving outcomes, such as quality of life (Chronister et al., 2016), and experiencing satisfaction, usefulness, an increased sense of self, and a more satisfying relationship with the care recipient (Shirai et al., 2009). ...
Family caregivers need greater support to provide optimal assistance to their care recipients. Using family communication patterns theory (FCPT), this study examined conversation and conformity orientation, received social support by caregivers from family members, and perceived quality of care (i.e., caregiving mastery). An online survey of 191 adults caring for or who had previously cared for family members with a variety of health conditions revealed that conversation orientation is positively related to received social support, which is positively associated with quality of care. Received social support mediated the relationship between family conversation orientation and quality of care, though indirect effects for conformity orientation were not observed.
PURPOSE
The use of electronic patient-reported outcome measures (ePROMs) in supportive cancer care can lead to benefits, such as identifying at-risk patients in need of closer monitoring and treatment. Despite these benefits, most studies examining ePROMs in this area were for clinical trials rather than standard care. Since there is a need to identify which patients are more likely to participate in ePROMs, this study assessed ePROM participation rates and factors influencing greater participation among patients receiving supportive care.
METHODS
This retrospective data analysis took place at a supportive care clinic within a National Cancer Institute–designated Comprehensive Cancer Center in the southeastern United States. Starting in 2017, ePROM assessments were implemented using tablets for in-person appointments at the clinic. The assessments included the Patient Health Questionnaire-9, National Comprehensive Cancer Network Distress Thermometer, and Edmonton Symptom Assessment System with additional questions added for other symptoms. Logistic regression and zero-truncated negative binomial regression models were used to analyze factors associated with ePROM assessment submission.
RESULTS
The study included 4,780 patients, with 42.7% submitting at least one ePROM assessment. Higher odds of ePROM submission were observed among patients age 35-64 years, had Medicare, had nonmetastatic cancer, or had genitourinary, breast, or multiple cancers. Additionally, higher rates of ePROM submissions were observed among patients who were younger; had GI, breast, or multiple cancers; had nonmetastatic cancer; or had private insurance.
CONCLUSION
This study reveals that submission rates of ePROM assessments in a cancer center's supportive care clinic may be influenced by patient demographics, cancer history, and social determinants of health. Interventions to improve ePROM submission rates may need to be tailored on the basis of cancer site, presence of metastatic cancer, and caregiver support.
This umbrella review aims to describe caregiver interventions tested across populations of informal caregivers of older adults and to examine the effect of caregiver interventions on depression, burden, and quality of life across intervention types and care-recipient populations. PubMed, Scopus, APA PsycInfo, ABIM, Sociological Abstracts, PAIS, and EconLit databases were systematically searched. Forty systematic reviews were identified as meeting inclusion criteria. Most commonly, interventions focused on improving outcomes for caregivers of older adults with dementia. Among the included reviews, caregiver depression was most likely to be reduced by caregiver interventions, and cognitive behavioral therapy (CBT) and mindfulness-based interventions (MBI) were most effective. The use of information and communication technologies to deliver caregiver interventions is increasingly common. Standardization of intervention classifications and transparent reports of intervention delivery details will strengthen research in this field.
Background
While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interpret. Carers remain undersupported with a lack of dedicated, effective, evidence-based programs. We will conduct a meta-review to synthesize this evidence and determine the state of science in this field.
Objective
This study aims to address the question, “what psychosocial interventions are available to promote the well-being of carers for people with cancer?”
Methods
A meta-review will synthesize the relevant reviews of psychosocial interventions that have been developed and evaluated with carers for people with cancer. A total of 4 electronic databases (PsycInfo, MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews) will be searched for reviews published between January 2013 and December 2023. A team-based approach will be taken for screening and assessment of the returned records against the eligibility criteria to determine inclusion. Included reviews will be critically appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Relevant data on study characteristics, carer and patient populations, intervention details, and psychosocial outcomes will be extracted, synthesized, and the findings will be presented in a narrative format.
Results
It is anticipated that the study will be completed by October 2024.
Conclusions
Ensuring that carers have access to evidence-based programs that promote their well-being as they care for loved ones is critical. This meta-review will contribute to program development and translation efforts by providing a clear picture of the intervention evidence base of carers of patients with cancer and identifying notable strengths, weaknesses, and gaps across the literature. The findings are anticipated to offer future directions to advance research in the field.
Trial Registration
PROSPERO (CRD42023403219); https://tinyurl.com/4tnzv49s
International Registered Report Identifier (IRRID)
DERR1-10.2196/56403
This objective of this chapter is to describe who the caregivers are and the important role they play in the lives of patients with hematologic malignancies across the lifespan. Methods and instruments commonly used to assess the needs and the impact of providing care in both the research and clinical settings are reviewed. Finally, evidence-based interventions and resources available to support caregivers of patients with hematologic malignancies are reviewed.
Background
Caregivers of patients with cancer are susceptible to profound psychological distress and low quality of life owing to the substantial demands of caregiving. The comprehensive needs of caregivers are closely linked to their quality of life. However, little is known about the relationship between these factors.
Objective
This study aimed to determine whether comprehensive needs mediate the relationships between psychological stress and quality of life in caregivers of patients with cancer.
Methods
A cross-sectional design was used to recruit 382 participants through convenience sampling. Psychological stress, comprehensive needs, and quality of life were measured using a questionnaire.
Results
Psychological stress was associated with higher comprehensive needs ( r = 0.30, P < .01) and lower quality of life ( r = −0.20, P < .01). Comprehensive needs were negatively associated with quality of life ( r = −0.28, P < .01). Mediation analysis findings revealed that both the indirect effect of psychological stress on quality of life via comprehensive needs ( β = −0.10; P < .001) and its direct effect on quality of life ( β = −0.16; P < .01) were statistically significant, suggesting a partial mediatory effect of comprehensive needs between psychological stress and quality of life.
Conclusions
Our findings suggest that reducing psychological stress can improve quality of life by promoting satisfaction with comprehensive needs.
Implications for Practice
Interventions that help reduce psychological stress and meet the comprehensive needs of caregivers of patients with cancer can improve their quality of life.
Objectives:
Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden.
Methods:
In this cross-sectional study, advanced cancer patient-caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients' symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables.
Results:
Two hundred seven dyads were analyzed. FCs were on average 50 years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p < 0.001), anxiety (86% vs. 67%; p = 0.003), caring for the patient alone (45% vs. 24%; p = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43-6.60]; p = 0.004), anxiety (3.02 [1.19-7.71]; p = 0.021), caring for the patient alone (2.69 [1.26-5.77]; p = 0.011), caregiver perception of patient's fatigue (1.26 [1.01-1.58]; p = 0.04), and patient's religion (3.90 [1.21-12.61]; p = 0.02) were independently associated with caregiver burden.
Significance of results:
FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient-caregiver dyads to decrease caregiving burden among Latinos.
Carers of cancer patients have a more considerable hardship than caregivers of older persons and a burden equivalent to caregivers of dementia patients. While carers’ health has been demonstrated to worsen due to their caregiving for cancer patients, the psychological determinants of long-term health deterioration are less well understood. The physical and sleep burdens, psychosocial and spiritual burdens, long-term and quality-of-life-related burdens, financial burdens, bereavement burdens, and caregiver guilt will all be discussed in this chapter, based on the most recent available data. Because depression is a long-term problem for this population, all of these findings suggest that cancer caregiver programs should include information on how to manage caregiver-related distress in the early survivorship phase, as well as how to identify best and recruit effective social programs to improve caregivers’ personal and social resources in early survivorship. Furthermore, the diverse aspects of cancer care and the psychological elements of persons participating in cancer care at various phases of survivorship are crucial to increasing care effectiveness and optimizing the quality of life of survivors and caregivers. In addition, because informal caregivers play such an essential role in cancer care, cancer policy is increasingly focusing on and recognizing the importance of providing effective and appropriate support to informal caregivers in managing the impact of their caregiving responsibilities on their regular jobs or other caregiving responsibilities.KeywordsCancer caregiverPsychosocialDistress
There is growing scientific consensus that informal supportive relationships enhance a patient’s overall chances of longer survival (eg. Lutgendorf and Andersen, Am Psychol 70(2):186-197, 2015; Holt-Lunstad et al., PLoS Med 7(7):e1000316, 2010; Andersen et al., Cancer 113(12):3450-3458, 2008) and improve quality of life in caregivers of people diagnosed with cancer. (Hebdon et al., Support Care Cancer 29(8):4395-4404, 2021). These consequential findings underscore the clinical need to assess and promote support among the personal relationships of patients with cancer and their informal caregivers across the cancer and recovery continuum. This chapter covers theoretical tenets (buffering and main effects models and attachment theory) and the latest available scientific evidence which includes meta-analyses, systematic reviews, and RCTs. Psychosocial nurse interventions that strengthen informal supportive relationships including between the patient and caregiver can enhance overall resilience contributing to the goals of medical treatment and the overall health and survivability of the patient.KeywordsInformal patient supportsInformal caregiver supportPersonal relationshipsPartner and spousal supportSupportive strategiesCancer carePersonal and social resources
Objectives:
Hematologic malignancies (HMs) are life-threatening cancers that frequently entail aggressive, long, inpatient treatment protocols. This can result in numerous concurrent symptoms and decreased quality of life for patients and can affect family caregivers (FCs). This study examined the impact of an HM diagnosis on patients and on their FCs.
Sample & setting:
A descriptive design was used to explore the experiences of 28 newly diagnosed patients and their FCs. All patients were receiving treatment on an inpatient acute oncology unit at a National Cancer Institute-designated cancer center.
Methods & variables:
Semistructured, separate interviews with patients and FCs were recorded and transcribed verbatim. Textual and content analyses were conducted to generate common themes.
Results:
Patients and FCs reported how diagnosis and treatment affected them physically, emotionally, logistically, and financially. They described the effects of their experiences with the health system and providers in areas such as diagnostic process, trust in the medical team, support needs, and hospitalization.
Implications for nursing:
Understanding the parallel experiences of patients with HMs and their designated FCs allows researchers to develop targeted interventions and enables clinicians to provide personalized patient- and family-centered care.
Physical activity (PA) is recommended for cancer survivors and their romantic partners yet cancer couples may be unaware of the benefits of PA specific to them. Exercise interventions targeting survivors and partners simultaneously may prove effective at increasing exercise knowledge, intentions, and outcomes. To examine the effects of a remotely-delivered cancer-specific exercise education video on cancer survivors’ and their partners’ exercise knowledge, beliefs, and intentions. Cancer survivors (N = 209) and their romantic partners (N = 155) completed an online survey with an embedded education video randomized to half the sample. Group differences (education vs. control) on study constructs among the whole sample and on a subset of the sample not meeting exercise guidelines [i.e., less than 150 min of moderate to vigorous physical activity (MVPA) per week; 50.5% survivors, 45.1% partners] were examined. Group differences on study constructs were also tested between survivors and partners meeting exercise guidelines or not. Survivors and partners in the education condition were more likely to correctly report the MVPA guidelines. The education increased survivors’ personal exercise importance, outcome expectations, and likelihood of joining an individual exercise program. Participants meeting guidelines were significantly different on multiple exercise beliefs compared to those who were not. Among those not meeting guidelines, the education increased survivors’ belief in the importance of exercising with their partner. A remotely-delivered exercise education video increased exercise knowledge and beliefs, which represents an important step in the development of couples’ exercise interventions for cancer survivors and their romantic partners.
Objectives
There are many effective palliative care programs for patients with advanced cancer. However, little is known about effective programs for family caregivers of patients with advanced cancer, especially in home-based palliative care settings. This study aimed to determine the effect of the Online Daily Diary (ONDIARY) program on the quality of life (QOL) of family caregivers of patients with advanced cancer in home-based palliative care settings.
Methods
This study used a quasi-experimental design with a control group. The sample comprised 60 family caregivers (intervention group n = 30, control group n = 30) of patients with advanced cancer receiving home-based palliative care. The intervention group was assigned to the ONDIARY program in addition to usual care, and the control group was assigned to usual care. Group allocation was not randomized. The ONDIARY program is a 7-day online diary intervention program that aims to enhance emotional competence. Outcome measures were feasibility assessment, and primary and secondary outcome assessment. Primary and secondary outcome measures were the Caregiver Quality of Life Index-Cancer (CQOLC) and the six-item Kessler Psychological Distress Scale (K6). Repeated measures analysis of variance was performed on each measure, with group and group×time interactions.
Results
There was a significant group×time interaction in CQOLC scores (F = 9.324, P = 0.003). The CQOLC scores of family caregivers in the intervention group were maintained after the intervention, whereas those in the control group declined. There was no significant difference in K6 scores between the two groups.
Conclusion
The results suggest that the ONDIARY program in addition to usual care has potential to be effective in preventing decline and maintaining QOL of family caregivers of patients with advanced cancer in home-based palliative care settings.
Background
Patient-centered cancer care includes emotional, informational, and practical support that is personalised to the needs of patients and inclusive of family and friends. However, when supportive care referrals are offered in hospital settings, distressed patients and carers do not consistently act on those referrals, which can prolong patient suffering. The degree to which sub-optimal referral uptake also occurs in Australian telephone support services is unknown.
Aims
To report, among a sample of distressed patients and caregivers who called a cancer information and support service: 1) the types of services used; 2) proportion who received and actioned a referral (uptake); 3) associations between referral to a service and callers’ characteristics); and, 4) associations between uptake of a referred service and callers’ characteristics.
Methods
This study used cross-sectional data collected at 3-month post-baseline from control participants (usual care group) enrolled in the Structured Triage and Referral by Telephone (START) trial. The START trial recruited distressed adult cancer patients and caregivers from the Cancer Council Information and Support Service (CIS). A research assistant conducted a 30–45 min telephone interview with participants, which included recall of referrals provided by CIS staff and reported uptake of referral(s) to the offered service types.
Results
Most patients (98%) and caregivers (97%) reported receiving a referral to a service. For patients and caregivers respectively, information materials (71%, 77%), CIS call-back (51%, 43%), practical services (52%, 45%), and group peer support (49%, 51%) were the services most frequently offered. For callers receiving a referral, uptake was highest for information materials (91%) and CIS call-backs (89%) and lowest for specialist psychological services (30%). Significant association was found between older age and reduced uptake of services (p = 0.03).
Conclusion
The high uptake rate of CIS call-backs suggests it is a potentially more acceptable form of support compared to specialist psychological services. Efforts to reduce the barriers to telephone-based psychological services are required. Specifically, older age peoples’ and caregivers’ preferences for support and priorities who may benefit from a referral coordinator.
Background:
Informal caregivers may experience a significant burden while caring for cancer patients. Little is known about how caregiver burden varies across different palliative cancer care settings and the factors influencing it.
Objectives:
We compared the severity of caregiver subjective stress burden (emotional impact) among caregivers of patients seen in the outpatient supportive care center (SCC) with those being cared for in the acute palliative care unit (PCU). Secondary aims were to compare other caregiver burden dimensions, quality of life, and any association of caregiver subjective stress burden to various patient and caregiver factors.
Setting and Design:
Eligible patients and their informal caregivers in the SCC or PCU at a comprehensive cancer center in the USA were approached and enrolled. The Montgomery-Borgatta Caregiver Burden Scale and the Short-form 36 were used to measure burden and quality of life. Multivariate general linear regression was employed to evaluate the effect of covariates on subjective stress burden.
Results:
Ninety-eight dyads in the SCC and 74 dyads in the PCU were enrolled. PCU caregivers reported worse subjective stress burden (p = 0.0029) and mental health (p = 0.0299). Multivariate analysis showed correlations between subjective stress burden and caregivers' objective burden (p = 0.0136), subjective demand burden (p ≤ 0.0001), mental health (p = 0.0074), duration of caregiving (p = 0.0680), education (p = 0.0192) and with patients' anxiety (p = 0.0003) and current/recent cancer treatment (p = 0.0579).
Conclusion:
PCU caregivers demonstrated worse emotional burden and mental health than those in the SCC. More research is needed to tailor interventions for various caregiver burden dimensions. NCI Clinical Trial Registration Number ID: NCI-2019-01197.
Background
Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes people who are living with or have lived with cancer worldwide. The present study sought to explore the experiences of family-based caregivers for people with cancer, their role in providing clinical care for their loved ones, and views of the support needed to enable them to participate in healthcare partnerships.
Methods
Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach.
Results
Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care as a family-based caregiver; 2) Healthcare partnership dynamics; 3) Skillset Development, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role.
Conclusion
Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.
Introduction : Quality of life is a multidimensional concept and a subjective value that depends on many factors. Disability caused by sight loss induces changes for both patients and their carers. The function of a blind person’s carer is usually performed by family members, whose limited knowledge limits their ability to help effectively and satisfactorily. This, in turn, may lead to their reduced sense of the quality of life.
The aim of this study was to assess the quality of life of blind people’s carers.
Materials and methods : The study was conducted September– October 2016 and involved 130 blind peoples’ carers using a diagnostic poll. Short Form Survey SF-36 and a specially designed questionnaire were used. The majority of participants were women (69.23%), married couples (63.1%), with high school education (40.77%).
Results : Wellbeing self-assessment indicated that 36.15% of carers considered their mental condition to have worsened, while 43.08% remained at the same level when compared to 1 year earlier. Analysis of quality of life showed that carers very highly rated their physical functioning 59.46 ±26.35; social functioning 57.4 ±26.12; vitality 55.48 ±23.27; and emotional functioning 54.81 ±29.24.
Conclusions : Quality of life tends to gradually deteriorate as the carers grow older. The carer’s educational background and the professional activity of the disabled person influence the assessment of the carer’s quality of life.
PURPOSE
Family and friends often provide informal care for patients with cancer, coordinating care and supporting patients at home. Stress, depression, and burnout are increasingly recognized among these informal caregivers. Although past research has described a range of needs, including the need for information, details about unmet informational needs for caregivers have not been fully described. We sought to assess unmet information management needs for informal caregivers in the digital era.
METHODS
This was a qualitative research study with semistructured interviews and focus groups of nonprofessional caregivers for patients with cancer, facilitated using a discussion guide. Eligible caregivers supported patients in the community who were in treatment (chemotherapy or radiotherapy) or completed treatment within 3 years. Participants were recruited using informational flyers at an academic cancer center and in the local community of metropolitan Milwaukee, Wisconsin. Sessions were transcribed verbatim and analyzed inductively to identify themes.
RESULTS
Thirteen caregivers participated, the majority between 41 and 60 years of age: seven of 13, 53.8%, were predominantly women; 10 of 13 (76.9%) were educated, 10 of 13 (76.9%) had graduated from college; and of modest means, six of 13 (46.2%) had household incomes < $35,000. Four themes emerged: (1) the information overload paradox, where caregivers felt overloaded by information yet had unmet informational needs; (2) navigating volatility as a caregiver, with changing or unknown expectations; (3) caregivers as information brokers, which placed new burdens on caregivers to seek, share, and protect information; and (4) care for the caregiver, including unmet information needs related to self-care.
CONCLUSION
This study identified several informational challenges affecting caregivers. Caregivers have dynamic and evolving informational needs, and strategies that support caregivers through just-in-time information availability or dedicated caregiver check-ins may provide relief within the stress of caregiving.
Background
Being a relative of patients with oesophageal cancer or cancer in the oesophageal junction is stressful, as the healthcare system often overlooks concerns about the future as well as the roles and needs of relatives. There is a lack of research addressing relatives’ experiences, roles and needs for participation in decisions.
Aims and objectives
To explore relatives’ experiences before the start of treatment and their subsequent roles and needs for participation in treatment decisions.
Design
A qualitative approach based on a phenomenological – hermeneutical methodology was used.
Methods
Data consisted of participant observations and semi‐structured interviews with 19 relatives of patients with oesophageal cancer. We analysed data with inspiration from Ricœur’s theory of interpretation.
Results
The relatives were fellow sufferers, experiencing uncertainties and fear for the future with the patients, but they were simultaneously a challenged anchor during a difficult time, actively involved in handling the diagnosis and the everyday life. The relatives were positioned on the sideline both by the professionals and by themselves; they took a passive and subordinate part in decisions.
Conclusion
Relatives are central to cancer care and treatment. Adequate and timely information is imperative for relatives as well for patients in order to facilitate shared decision‐making. We advocate for a new approach to relatives in order to prepare the relatives for their roles and support their individual needs but also to acknowledge relatives’ knowledge about everyday life from the relatives’ perspective.
Young women with breast cancer are at higher risk for psychological distress, including depression and anxiety. Psychological distress negatively affects patients’ clinical outcomes. In this chapter, we review the course of adaptation across the illness trajectory, prevalence of psychosocial distress in younger women with breast cancer, potential risk factors for distress, and the role of interventions in both reducing cancer-related morbidity and mortality and promoting psychosocial adaptation. Current recommendations for meeting the psychosocial needs of women treated for cancer in the U.S. and across Europe are reviewed. Brief discussion is also provided of the importance of addressing sexuality and intimacy after cancer, a commonly neglected topic, as well as recognizing and attending to the critical role that informal caregivers, often partners or other family members, play in women’s function and well-being.
Importance
Melanoma has a high survival rate if it is detected early. Training patients with early-stage melanoma who are at risk of developing new melanomas to perform skin self-examination (SSE) may improve survival.Objective
To examine for whom the intervention works best in a sample composed of dyads of patients with melanoma and skin-check partners who received an SSE intervention vs customary care.Design, Setting, and Participants
For 494 patients with stage 0 to IIB melanoma (mean age, 55 years; 253 [51.2%] females) and their skin-check partners (mean age, 55 years; 280 [56.7%] females), a randomized clinical trial was conducted in ambulatory care dermatologic offices from June 6, 2011, to April 14, 2014. Follow-up assessments were performed at 12 months. Analysis was performed between March 23 and June 25, 2015.Methods
Dyads of 494 patients and their partners were randomly assigned to receive the intervention (395 patients) or customary care (control) (99 patients). The main outcome was patient SSE self-efficacy. Partner motivation to assist with SSE and relationship quality (eg, agreeability, activities with partner, and happiness) were assessed for moderation of the influence of the intervention’s effect on SSE self-efficacy.Results
Relationship quality, defined by activities with the partner (β = –0.892, SE = 0.432, t = –2.066; P = .001) and happiness (β = –4.586, SE = 2.044, t = –2.24; P = .001), significantly moderated the intervention effects on patients’ SSE self-efficacy. In contrast, patient-partner agreeability (β = –0.262, SE = 0.148, t = –1.773; P = .09) and partner motivation (β = –0.328, SE = 1.024, t = –0.320; P = .10) did not significantly moderate the intervention effects on patients’ SSE self-efficacy. Differences between the conditions were highest when activities performed with the partner were below average (mean difference, 6.652; P = .001) and when happiness was below average (mean difference, 7.000; P = .001). Although everyone receiving the intervention experienced some benefit, the findings indicate the greatest increases in self-efficacy were observed for those with below-average activities performed with the partner and happiness.Conclusions and Relevance
The training of patients with melanoma and their partners in early-detection SSE benefited some more than others. Pairs who have low relationship quality, as determined by activities performed with the partner and happiness, may have received the greatest benefits from the training intervention because they were given an activity to perform together.Trial Registration
clinicaltrials.gov Identifier: NCT01432860
Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient (spouse/partner, etc.) are related to these experiences.
In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN) to 1–3 of their caregivers.
A total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver’s relationship to the patient were found.
Overall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted.
Objective:
Informal caregivers (family and friends) of people with cancer are often unprepared for their caregiving role, leading to increased burden or distress. Comprehensive Health Enhancement Support System (CHESS) is a Web-based lung cancer information, communication, and coaching system for caregivers. This randomized trial reports the impact on caregiver burden, disruptiveness, and mood of providing caregivers access to CHESS versus the Internet with a list of recommended lung cancer websites.
Methods:
A total of 285 informal caregivers of patients with advanced nonsmall cell lung cancer were randomly assigned to a comparison group that received Internet or a treatment group that received Internet and CHESS. Caregivers were provided a computer and Internet service if needed. Written surveys were completed at pretest and during the intervention period bimonthly for up to 24 months. Analyses of covariance (ANCOVAs) compared the intervention's effect on caregivers' disruptiveness and burden (CQOLI-C), and negative mood (combined Anxiety, Depression, and Anger scales of the POMS) at 6 months, controlling for blocking variables (site, caregiver's race, and relationship to patient) and the given outcome at pretest.
Results:
Caregivers randomized to CHESS reported lower burden, t(84) = 2.36, p = .021, d = .39, and negative mood, t(86) = 2.82, p = .006, d = .44, than those in the Internet group. The effect on disruptiveness was not significant.
Conclusions:
Although caring for someone with a terminal illness will always exact a toll on caregivers, eHealth interventions like CHESS may improve caregivers' understanding and coping skills and, as a result, ease their burden and mood.
High-grade gliomas (HGG) are serious primary brain tumors that may prevent the patient from functioning normally in social, emotional and cognitive respect. Often the partner's role will convert to that of informal caregiver. Consequently, they may experience significant stress and reductions in caregiver mastery, negatively affecting their health-related quality of life (HRQOL). We aimed at (1) determining factors that impact HRQOL and mastery of caregivers of HGG patients, and (2) investigate if a structured intervention consisting of psychoeducation and cognitive behavioral therapy leads to improvements in the mental component of HRQOL and mastery of caregivers. Fifty-six patient-caregiver dyads were randomly assigned to the intervention group or the care as usual group. The intervention program consisted of six one-hour sessions with a psychologist. Participants completed questionnaires concerning their perceptions of the patients' HRQOL (SF-36), neurological functioning (BN20), and cognitive functioning (MOS), and concerning their own HRQOL (SF-36) and feelings of caregiver mastery (CMS) both at baseline (i.e. before randomization) and every 2 months thereafter until 8 months later, five times in total. Patients' HRQOL and neurological functioning were found to be related to HRQOL and feelings of mastery of the informal caregiver at baseline. The intervention helped caregivers in maintaining a stable level of HRQOL and improved feelings of mastery over an 8 month period. Our findings suggest that informal caregivers can benefit from a psychological intervention as it is a helpful tool in maintaining a stable level of mental functioning and caregiver mastery.
To provide an overview of patient and caregiver emotional distress; examine the sources of their distress, review evidence-based interventions that can reduce distress, and provide guidelines for assessment and intervention.
Peer-reviewed publications.
There is a significant, reciprocal relationship between patient and caregiver emotional distress. Sources of distress vary by phase of illness. Evidence-based interventions can reduce distress and anxiety, but often are not implemented in practice.
Nurses need to assess patients and family caregivers for distress and intervene to reduce distress by fostering patient-caregiver teamwork, communication, and self-care; providing information; and referring to resources as needed.
Objective:
Informal caregivers (ICs) are relatives, friends, and partners who have a significant relationship with and provide assistance (i.e., physical, emotional) to a patient with a life- threatening, incurable illness. The multidimensional burden that results from providing care to a patient with cancer is well documented, and as a result, a growing number of psychosocial interventions have been developed specifically to address this burden. The purpose of the present study was to characterize the state of the science of psychosocial interventions for informal cancer caregivers.
Method:
A comprehensive systematic review of interventions for cancer caregivers was conducted via an electronic literature search of publications between 1980 and January 13, 2011. A final sample of 49 interventions was reviewed in detail.
Results:
The interventions, which varied in terms of modality and patient population, fell into the following eight categories: psychoeducation, problem-solving/skills building interventions, supportive therapy, family/couples therapy, cognitive-behavioral therapy, interpersonal therapy, complementary and alternative medicine interventions, and existential therapy. Benefits and disadvantages of each of the categories are discussed, with special attention given to studies that produced null findings.
Significance of results:
Beyond specific techniques, structured, goal-oriented, and time-limited interventions that are integrative appear to be the most feasible and offer the greatest benefits for ICs of cancer patients. Future studies are needed to examine the specific benefits and challenges of delivering interventions in alternative modalities (Internet, Skype) so that the needs of a greater number of ICs may be addressed.
Background
Using available communication technologies, clinicians may offer timely support to family caregivers in managing symptoms in patients with advanced cancer at home.
Aim
To assess the effects of an online symptom reporting system on caregiver preparedness, physical burden, and negative mood.
Design
A pooled analysis of two randomized trials (NCT00214162 and NCT00365963) was conducted to compare caregiver outcomes at 6 and 12 months after intervention between two randomized, unblinded groups using General Linear Mixed Modeling. Caregivers in one group (Comprehensive Health Enhancement Support System-Only) were given access to an interactive cancer communication system, the Comprehensive Health Enhancement Support System. Those in the other group (Comprehensive Health Enhancement Support System + Clinician Report) received access to Comprehensive Health Enhancement Support System plus an online symptom reporting system called the Clinician Report. Clinicians of patients in the Comprehensive Health Enhancement Support System + Clinician Report group received e-mail alerts notifying them when a symptom distress was reported over a predetermined threshold.
Setting/participants
Dyads (n = 235) of advanced-stage lung, breast, and prostate cancer patients and their adult caregivers were recruited at five outpatient oncology clinics in the United States.
Results
Caregivers in the Comprehensive Health Enhancement Support System + Clinician Report group reported less negative mood than those in the Comprehensive Health Enhancement Support System-Only group at both 6 months (p = 0.009) and 12 months (p = 0.004). Groups were not significantly different on caregiver preparedness or physical burden at either time point.
Conclusions
This study provides new evidence that by using an online symptom reporting system, caregivers may experience less emotional distress due to the Clinician Report’s timely communication of caregiving needs in symptom management to clinicians.
Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time.
Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research.
The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden) and care recipient physical and health care use outcomes.
Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient outcomes, including considering whether expanding to economic status and health care use of the caregiver can be accommodated, to ease subsequent economic evaluations of caregiving. Third, intervention studies should measure a common set of outcomes to facilitate cross-time and cross-study comparisons of effectiveness.
There are few interventions for couples facing cancer.
This study aims to investigate the utility of providing dyadic skills to these couples.
Woman recently diagnosed with breast or gynecological cancer and their partners were randomly assigned to either a couple-skills intervention (Side by Side) or to cancer education (Couples Control Program). Assessments with self-report and behavioral observation of both partners were conducted four times over 16 months.
Multilevel analyses of data from 72 participating couples suggest that females receiving Side by Side showed larger reductions in fear of progression, and couples reported less avoidance in dealing with the cancer, more posttraumatic growth, and better relationship skills relative to the Couples Control Program. All differences favoring Side by Side disappeared by 16 months after the diagnosis.
Short-term changes in functioning may be improved by enhancing couples' dyadic skills during acute medical treatment of the disease.
We evaluated the effect of Emotionally Focused Therapy (EFT) [intervention (INT)], modified for the advanced cancer population versus standard care [control (CTL)], on marital functioning and psychosocial outcomes among distressed couples. EFT examines the ways couples process patterns of interaction, facilitating change.
Forty-two patients with metastatic cancer and their caregivers were assigned randomly to receive eight sessions of EFT delivered by one EFT-trained psychologist or standard care provided by multidisciplinary clinicians. Partners completed measures of marital functioning, depression, hopelessness, empathic caregiving (patient), and caregiver burden (caregiver) before randomization at baseline (T0), post-intervention (T1), and 3-month post-intervention (T2). Data were analyzed using three-way analyses of covariance; main effects were treatment, patient status, and sex. Multilevel modeling was also employed.
At T1, INT group led to significant improvement in marital functioning (p ≤ 0.0001) and patients' experience of caregiver empathic care (p = 0.02) versus CTL group. Effect sizes for these differences were in the large range (d = 1.00). In both groups, patients showed a marginally higher mean score for marital functioning compared with caregivers [INT: M = 56.3, standard deviation (SD) = 4.6 vs M = 54.3, SD = 4.5; CTL group: M = 43.4, SD = 10.3 vs M = 42.4, SD = 6.8, respectively]. At T2, results were maintained.
The effectiveness of and adherence to the EFT couple intervention for patients facing advanced cancer were demonstrated in this study. Larger randomized control trials are needed to confirm these findings. Qualitative studies may help to further understand the mechanism by which such an intervention may act. Copyright
Patients on investigational clinical trials and their caregivers experience poor quality of life (QOL), which declines as the disease progresses.
To examine the effect of a standardized cognitive-behavioral problem-solving educational intervention on the QOL of patients enrolled on investigational clinical trials and their caregivers.
Prospective, multi-institution, randomized trial. QOL was measured repeatedly over 6 months.
Patients were simultaneously enrolled onto phase 1, 2, or 3 Institutional Review Board (IRB)-approved cancer clinical trials.
Intervention arm dyads participated in three conjoint educational sessions during the first month, learning the COPE problem solving model. Nonintervention arm dyads received usual care.
Global QOL was measured by the City of Hope Quality of Life Instruments for Patients or Caregivers; problem solving skills were measured by the Social Problem Solving Inventory-Revised.
The results are reported using the CONSORT statement. The analytic data set included 476 dyads including 1596 patient data points and 1576 care giver data points. Patient QOL showed no significant difference in the rate of change between the intervention and usual care arms (p = 0.70). Caregiver QOL scores in the intervention arm declined, but at less than half the rate in the control arm (p = 0.02).
The COPE intervention enabled the average caregiver to come much closer to stable QOL over the 6-month follow-up. Future studies should enroll subjects much earlier in the cancer illness trajectory, a common patient/caregiver theme. The maximum effect was seen in caregivers who completed the 6-month follow-up, suggesting that the impact may increase over time.
The primary purpose was to test the effectiveness of two telephone-delivered psychosocial interventions for maintaining and improving quality of life (QOL) (psychological, physical, social, and spiritual well-being) among 71 prostate cancer survivors and the 70 intimate or family partners who were supporting them in their recovery.
This study used a three-wave repeated measures experimental design. Both the interpersonal counseling intervention (TIP-C) and health education attention condition (HEAC) were delivered using the telephone.
Improvements in depression, negative affect, stress, fatigue, and spiritual well-being were significantly higher for survivors in the HEAC than for those in the TIP-C condition. Partners in the HEAC condition showed significantly greater improvements in depression, fatigue, social support from family members, social well-being, and spiritual well-being compared to partners in the TIP-C condition. The results revealed superior outcomes for those assigned to the HEAC intervention.
The psychosocial interventions in this study were effective in maintaining or improving the QOL for prostate cancer survivors and their partners. Both the survivor and their intimate partner or family member benefitted from the interventions. Future research is needed to determine the optimal timing and client characteristics for each intervention.
In recent years, a vast literature has accumulated on the negative effects on family caregivers of providing care to elders, while relatively little research has explored caregiving as a positive experience. Only a handful of studies have examined any aspect of informal caregiving among American Indians. This mixed methods study explores the negative and positive aspects of providing elder care among 19 northern plains American Indian family members. These caregivers described low levels of burden and high levels of reward, attributable to cultural attitudes toward elders and caregiving, collective care provision, strong reciprocal relationships with elders, enjoyment of elders, and relatively low levels of care provision. Caregiving manifested as part of a complex exchange of assistance rather than a unidirectional provision of assistance from the family member to the elder. That caregiving emerged as such an overwhelmingly positive experience in a community faced with poverty, alcohol disorders, trauma, and cultural traumatization is testimony to the important roles that elders often continue to play in these communities.
To determine the efficacy in overcoming attitudinal barriers to reporting cancer pain and using analgesics of an educational intervention presented to patients accompanied by a significant other (SO) as compared with patients alone.
Patient-SO pairs (N = 161) were randomized to the dyad condition (patient and SO received the intervention), solo condition (patient received the intervention), or care as usual. Dyad and solo conditions received the intervention at baseline (T1) and 2 and 4 weeks later.
Patients' and SOs' attitudes about analgesic use and patients' pain outcomes (pain severity, pain relief, interference with life, negative mood, and global quality of life [QOL]) at T1, 5 weeks later (T2), and 9 weeks later (T3).
Completers' analyses revealed no significant differences between groups at T2. At T3, patients in the dyad and the solo groups showed greater decreases in attitudinal barriers as compared with controls. T1-T3 changes in patients' barriers mediated between the dyad and solo interventions and pain severity, pain relief, pain interference, negative mood, and global QOL.
The intervention was no more efficacious when it was presented to dyads than to patients alone. Conditions under which SOs should be included in interventions need to be determined.
Systematic reviews and meta-analyses are essential to summarize evidence relating to efficacy and safety of health care interventions accurately and reliably. The clarity and transparency of these reports, however, is not optimal. Poor reporting of systematic reviews diminishes their value to clinicians, policy makers, and other users.
Since the development of the QUOROM (QUality Of Reporting Of Meta-analysis) Statement—a reporting guideline published in 1999—there have been several conceptual, methodological, and practical advances regarding the conduct and reporting of systematic reviews and meta-analyses. Also, reviews of published systematic reviews have found that key information about these studies is often poorly reported. Realizing these issues, an international group that included experienced authors and methodologists developed PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) as an evolution of the original QUOROM guideline for systematic reviews and meta-analyses of evaluations of health care interventions.
The PRISMA Statement consists of a 27-item checklist and a four-phase flow diagram. The checklist includes items deemed essential for transparent reporting of a systematic review. In this Explanation and Elaboration document, we explain the meaning and rationale for each checklist item. For each item, we include an example of good reporting and, where possible, references to relevant empirical studies and methodological literature. The PRISMA Statement, this document, and the associated Web site (http://www.prisma-statement.org/) should be helpful resources to improve reporting of systematic reviews and meta-analyses.
We examined the effects of an enhanced informal caregiver training (Enhanced-CT) protocol in cancer symptom and caregiver stress management to caregivers of hospitalized cancer patients.
We recruited adult patients in oncology units and their informal caregivers. We utilized a two-armed, randomized controlled trial design with data collected at baseline, post-training, and at 2 and 4 weeks after hospital discharge. Primary outcomes were self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving. Secondary outcomes were caregiver depression, anxiety, and burden. The education comparison (EDUC) group received information about community resources. We used general linear models to test for differences in the Enhanced-CT relative to the EDUC group.
We consented and randomized 138 dyads: Enhanced-CT = 68 and EDUC = 70. The Enhanced-CT group had a greater increase in caregiver self-efficacy for cancer symptom management and stress management and preparation for caregiving at the post-training assessment compared to the EDUC group but not at 2- and 4-week post-discharge assessments. There were no intervention group differences in depression, anxiety, and burden.
An Enhanced-CT protocol resulted in short-term improvements in self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving but not in caregivers' psychological well-being. The lack of sustained effects may be related to the single-dose nature of our intervention and the changing needs of informal caregivers after hospital discharge.
Systematic reviews and meta-analyses are essential to summarize evidence relating to efficacy and safety of health care interventions accurately and reliably. The clarity and transparency of these reports, however, is not optimal. Poor reporting of systematic reviews diminishes their value to clinicians, policy makers, and other users. Since the development of the QUOROM (QUality Of Reporting Of Meta-analysis) Statement-a reporting guideline published in 1999-there have been several conceptual, methodological, and practical advances regarding the conduct and reporting of systematic reviews and meta-analyses. Also, reviews of published systematic reviews have found that key information about these studies is often poorly reported. Realizing these issues, an international group that included experienced authors and methodologists developed PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) as an evolution of the original QUOROM guideline for systematic reviews and meta-analyses of evaluations of health care interventions. The PRISMA Statement consists of a 27-item checklist and a four-phase flow diagram. The checklist includes items deemed essential for transparent reporting of a systematic review. In this Explanation and Elaboration document, we explain the meaning and rationale for each checklist item. For each item, we include an example of good reporting and, where possible, references to relevant empirical studies and methodological literature. The PRISMA Statement, this document, and the associated Web site (www.prisma-statement.org) should be helpful resources to improve reporting of systematic reviews and meta-analyses.
To assess the efficacy of cognitive existential couple therapy (CECT) for relationship function, coping, cancer distress and mental health in men with localised prostate cancer and in their partners.
A randomised controlled trial was conducted with 62 couples randomly assigned to the six-session CECT programme or care as usual. The couple's relationship function (primary outcome), and coping, cancer distress and mental health (secondary outcomes) were evaluated at T0 (baseline), T1 (after treatment) and T2 (9 months from T0). A repeated-measures analysis of covariance model, which incorporated T0 measurements as a covariate, was used to compare treatment groups at T1 and T2.
After CECT, patients reported significantly greater use of adaptive coping (P = 0.03) and problem-focused coping (P = 0.01). These gains were maintained at follow-up, while relationship cohesion had improved (P = 0.03), as had relationship function for younger patients (P = 0.01). Younger partners reported less cancer-specific distress (P = 0.008), avoidance (P = 0.04), intrusive thought (P = 0.006), and hyperarousal (P = 0.01). Gains were maintained at follow-up, while relationship cohesion (P = 0.007), conflict resolution (P = 0.01) and relational function (P = 0.009) all improved.
CECT resulted in improved coping for patients and lower cancer-distress for partners. Maintained over time this manifests as improved relationship function. CECT was acceptable to couples, alleviated long-term relationship decline, and is therefore suitable as a preventative mental health intervention for couples facing prostate cancer. Given resourcing demands, we recommend dissemination of CECT be targeted at younger couples, as CECT was more acceptable to the younger group, and they derived greater benefit from it.
© 2015 The Authors. BJU International © 2015 BJU International.
Objective:
Cancer may impact negatively on an informal caregiver's health long after treatment has ended. This review identifies the self-report measures currently in use to measure caregivers need for support and determines their scientific soundness and clinical utility.
Method:
A systematic electronic database search of Medline, CINAHL, PsychINFO, BNI ProQuest was conducted. The psychometric properties and clinical utility of needs assessment tools for caregivers of cancer survivors (excluding advanced disease) were extracted and summarised.
Results:
Seven cancer survivor caregiver needs assessment tools were identified. Data on instrument development was well reported, although variability was noted in their structure and content. The majority demonstrated some degree of reliability and validity; only two were evaluated for test-retest reliability (CaSPUN and SPUNS) with only the SPUNS showing a high degree of reliability over time. The Health Care Needs Survey (HCNS), Needs Assessment of Family Caregivers-Cancer (NAFC-C) and Cancer Caregiving Tasks Consequences and Needs Questionnaire (CaTCoN) have been validated at various stages of the cancer continuum. Minimal data was available on responsiveness.
Conclusion:
All assessment tools identified require further psychometric analysis. For research purposes, the use of the SPUNS (with its acceptable test-retest reliability) appears most appropriate; although its length may be of concern for clinical use; therefore, the shorter SCNS-P&C is likely to be more suitable for use clinically. At present, the NAFC-C demonstrates a great potential in both the research and clinical environments; however, it requires further psychometric testing before it can be fully recommended. Further analysis is necessary on ideal response formats and the meaning of a total needs score.
To review key aspects of family caregiving as it applies to older adults with cancer, discuss the implications of caregiving on the physical and emotional health of caregivers, and discuss future research needs to optimize the care of older adults with cancer and their caregivers.
Literature review.
The number of older adults with cancer is on the rise and these older adults have significant caregiving needs. There is a physical, emotional, and financial toll associated with caregiving.
As the population of the United States ages, it will be even more important that we identify vulnerable older adults, understand their caregiving needs, and mobilize health care and community resources to support and assist their caregivers.
Objective:
To evaluate and estimate the effect of psychosocial interventions on improving the quality of life (QoL) of adult cancer caregivers.
Methods:
We conducted a systematic review of randomized controlled trials among adult cancer caregivers published from 1947 to 2011. Rigorous inclusion criteria included randomization of caregivers, use of control groups, and at least one active psychosocial intervention where caregiver QoL was measured. A pair of raters independently reviewed all abstracts, and studies were assessed for quality using an 11-item PEDro coding scale. Data were extracted, examined, and synthesized using a narrative approach.
Results:
Six randomized controlled trials met inclusion criteria out of 1066 identified abstracts. Studies were rejected because of methodological flaws and failure to report a measure of caregiver QoL. A total of 1115 caregivers were included at baseline measurements. Estimated effect sizes for included studies were nil to small ranging from 0.048 to 0.271. Studies with larger effect sizes targeted caregivers' problem-solving and communication skills.
Conclusions:
Interventions targeting problem-solving and communication skills may ease the burdens related to patient care and role changes associated with care while improving caregiver's overall QoL. Further research is needed to establish efficacy of interventions across all stages of the 2cancer caregiving experience, especially focusing on issues of caregiver retention, caregiver relationships to the cancer patient, and individual differences in caregiver experiences with different types of cancer.
Family caregivers of cancer patients receive little preparation, information, or support to perform their caregiving role. However, their psychosocial needs must be addressed so they can maintain their own health and provide the best possible care to the patient. The purpose of this article is to analyze the types of interventions offered to family caregivers of cancer patients, and to determine the effect of these interventions on various caregiver outcomes. Meta-analysis was used to analyze data obtained from 29 randomized clinical trials published from 1983 through March 2009. Three types of interventions were offered to caregivers: psychoeducational, skills training, and therapeutic counseling. Most interventions were delivered jointly to patients and caregivers, but they varied considerably with regard to dose and duration. The majority of caregivers were female (64%) and Caucasian (84%), and ranged in age from 18 to 92 years (mean age, 55 years). Meta-analysis indicated that although these interventions had small to medium effects, they significantly reduced caregiver burden, improved caregivers' ability to cope, increased their self-efficacy, and improved aspects of their quality of life. Various intervention characteristics were also examined as potential moderators. Clinicians need to deliver research-tested interventions to help caregivers and patients cope effectively and maintain their quality of life. CA Cancer J Clin 2010. © 2010 American Cancer Society, Inc.
Few intervention programs assist patients and their family caregivers to manage advanced cancer and maintain their quality of life (QOL). This study examined (i) whether patient–caregiver dyads (i.e., pairs) randomly assigned to a brief or extensive dyadic intervention (the FOCUS Program) had better outcomes than dyads randomly assigned to usual care and (ii) whether patients' risk for distress and other factors moderated the effect of the brief or extensive program on outcomes.
Advanced cancer patients and their caregivers (N = 484 dyads) were stratified by patients' baseline risk for distress (high versus low), cancer type (lung, colorectal, breast, or prostate), and research site and then randomly assigned to a brief (three-session) or extensive (six-session) intervention or control. The interventions offered dyads information and support. Intermediary outcomes were appraisals (i.e., appraisal of illness/caregiving, uncertainty, and hopelessness) and resources (i.e., coping, interpersonal relationships, and self-efficacy). The primary outcome was QOL. Data were collected prior to intervention and post-intervention (3 and 6 months from baseline). The final sample was 302 dyads. Repeated measures MANCOVA was used to evaluate outcomes.
Significant group by time interactions showed that there was an improvement in dyads' coping (p < 0.05), self-efficacy (p < 0.05), and social QOL (p < 0.01) and in caregivers' emotional QOL (p < 0.05). Effects varied by intervention dose. Most effects were found at 3 months only. Risk for distress accounted for very few moderation effects.
Both brief and extensive programs had positive outcomes for patient–caregiver dyads, but few sustained effects. Patient–caregiver dyads benefit when viewed as the ‘unit of care’. Copyright
There is a paucity of research evaluating the impact of symptom management interventions on increasing family caregiver involvement in symptom management and on caregivers' emotional health. In addition, most caregiver interventions are delivered by a health care professional, which can be costly to implement in clinical practice. The purpose of this study was to determine whether, in patients with solid tumors, a nurse-delivered symptom management intervention was more effective than a coach-led intervention in increasing caregiver involvement in symptom management and improving caregivers' emotional health.
Both caregivers and care recipients were recruited for the study. Inclusion criteria for patients were ≥40 years of age, English speaking, cognitively intact, and having a diagnosis of stage III or IV tumor. Dyads were randomized to a nurse-delivered symptom management intervention (N = 88) versus the coach-led group (N = 81). Data were collected via telephone interviews at baseline, 10, and 16 weeks.
There was no significant main effect of the problem-solving intervention on symptom assistance at 10 weeks, but there were two significant interactions, between trial arm and depressive symptoms and between baseline assistance with symptoms and relationship to the patient. Caregivers with lower depressive symptoms were more likely (OR = 1.99, 95% CI = 1.45-2.76) to provide assistance at 10 weeks if they received the nurse-delivered intervention. Spousal (versus non-spouses) caregivers who provided assistance at baseline were less likely to provide assistance at 10 weeks (OR = 0.58, 95% CI 0.36-0.94). No significant trial arm effects were found on caregiver emotional health, but assistance with greater number of symptoms was associated with worse caregiver depressive symptoms (p < 0.01) and burden (impact on schedule, p < 0.01).
Findings suggest that a nurse-delivered problem-solving intervention increases family caregivers' level of assistance in symptom management for caregivers with lower levels of depressive symptoms. Data also suggest interventions focused solely on care recipient symptom management may not be effective in improving caregivers' emotional health.
The decade from 2000 to 2010 was an era of tremendous growth in family caregiving research specific to the cancer population. This research has implications for how cancer family caregiving is conceptualized, yet the most recent comprehensive model of cancer family caregiving was published ten years ago. Our objective was to develop an updated and expanded comprehensive model of the cancer family caregiving experience, derived from concepts and variables used in research during the past ten years.
A conceptual model was developed based on cancer family caregiving research published from 2000 to 2010.
Our updated and expanded model has three main elements: 1) the stress process, 2) contextual factors, and 3) the cancer trajectory. Emerging ways of conceptualizing the relationships between and within model elements are addressed, as well as an emerging focus on caregiver-patient dyads as the unit of analysis.
Cancer family caregiving research has grown dramatically since 2000 resulting in a greatly expanded conceptual landscape. This updated and expanded model of the cancer family caregiving experience synthesizes the conceptual implications of an international body of work and demonstrates tremendous progress in how cancer family caregiving research is conceptualized.
Caring for older cancer patients after hospital discharge is challenging and many of their caregivers lack confidence to do so. This study investigated the effects of an individualized caregiver training program on self-efficacy in home care and symptom management. A total of 120 patient-caregiver dyads were randomly assigned to either the treatment (n = 60) or control group (n = 60). The training focused on prevention of infection, pain control, maintenance of nutrition and adequate elimination, and specific care issues identified by the caregiver. Control group received information about community-based resources. Results revealed a significant increase in self-efficacy after the training in the treatment group but not in the control group. No intervention effect was seen on caregiver's psychological well-being (depression, anxiety, and quality of life) and patient's physical symptoms.
To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience.
This systematic review identified the types of problems and burdens that FCs of cancer patients experience during the patient's illness. We also analyzed the language caregivers use to communicate their problems and responsibilities related to caregiving for the cancer patient.
Of 2845 titles identified, 192 articles met the inclusion criteria and are included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified.
A substantial evidence base supports the conclusion that FCs experience many difficult problems and increased responsibilities during and after the patient is undergoing treatment and rehabilitation for cancer. The insights gained from this review will help researchers and clinicians to understand the complexity of problems and responsibilities FCs experience. This understanding may encourage them to include support for FCs as part of total or holistic patient care. However, more research is needed to better understand the variations in caregiving experiences over time; how the caregiving perspective is influenced by different cultural, ethnic, or socioeconomic backgrounds as well as gender and age; and how problems and responsibilities related to caregiving interfere with daily life.
Partners and other family members are key supports for cancer patients. Most cope well with the caregiving role, but an important minority become highly distressed or develop an affective disorder. Female carers and those with a history of psychiatric morbidity are more vulnerable, as are those who take a more negative view of the patient's illness and its impact on their lives. Carers are likely to become more distressed and develop psychiatric morbidity as the illness advances and treatment is palliative. Carers are also more at risk when they lack a support network of their own and when there are relationship difficulties with the patient. The review discusses why, given this evidence, carers fail to take advantage of interventions designed to help them and those who participate derive only limited psychological benefits.
To describe the needs of family members of older persons undergoing cancer treatment and to examine the interventions designed to alleviate caregiver distress.
Research studies and published articles.
Interventions to reduce distress for caregivers of older persons with cancer have the potential to lower patients' hospital re-admissions and interruptions in cancer treatment and to improve patients' and caregivers emotional health.
Oncology practitioners must consider the needs of family caregivers when planning and implementing interventions to improve or maintain caregiver health.
Complementary therapies (CTs) are gaining popularity in the general population, including cancer patients, yet little is known about characteristics differentiating the use of one versus more CTs, about the patterns and persistence of CT use over time, or about the characteristics of cancer patients and their family caregivers who elect to participate in a study involving the use of CTs. The focus of this quasi-experimental study was to offer an 8-week, 5-contact, nurse-delivered intervention involving guided imagery, reflexology, and reminiscence therapy to cancer patients undergoing chemotherapy and their family caregivers. Participants were allowed to elect to use none or any combination of CTs. Twenty-seven percent of eligible patients signed consent forms and agreed to participate. The typical participant was Caucasian, married, and had at least a high school education. Higher levels of education predicted use of more than 1 CT among cancer patients; there were no significant predictors for caregivers. Female patients were more likely to complete the CT protocol than their male counterparts, but there were no associations between CT protocol completion and caregiver demographics. Patients and family caregivers who elected to use more than 1 CT did not consistently implement their CTs. Participants who elected to use only 1 CT were more consistently performing their CT over time, suggesting that this lower level of CT use may be easier to integrate into their lives during cancer treatment.
To compare the effects of partner-delivered foot reflexology and usual care plus attention on patients' perceived pain and anxiety.
The experimental pretest/post-test design included patient-partner dyads randomly assigned to an experimental or control group.
Four hospitals in the southeastern United States.
42 experimental and 44 control subjects comprised 86 dyads of patients with metastatic cancer and their partners, representing 16 different types of cancer; 23% of patients had lung cancer, followed by breast, colorectal, and head and neck cancer and lymphoma. The subjects had a mean age of 58.3 years, 51% were female, 66% had a high school education or less, and 58% were Caucasian, 40% were African American, and 1% were Filipino.
The intervention included a 15- to 30-minute teaching session on foot reflexology to the partner by a certified reflexologist, an optional 15- to 30-minute foot reflexology session for the partner, and a 30-minute, partner-delivered foot reflexology intervention for the patient. The control group received a 30-minute reading session from their partners.
Pain and anxiety.
Following the initial partner-delivered foot reflexology, patients experienced a significant decrease in pain intensity and anxiety.
A nurse reflexologist taught partners how to perform reflexology on patients with metastatic cancer pain in the hospital, resulting in an immediate decrease in pain intensity and anxiety; minimal changes were seen in the control group, who received usual care plus attention.
Hospitals could have qualified professionals offer reflexology as a complementary therapy and teach interested partners the modality.
Cancer affects not only the quality of life (QOL) of individuals with the disease but also that of their family members and close friends. The impact on various aspects of the family caregivers' QOL is significant throughout the trajectory of the illness. The authors reviewed literature on the QOL of family caregivers at the acute and middle- to long-term survivorship phases as well as the bereavement phase.
By using several databases, the authors searched the literature published in English from 1996 through July 2007. Keywords searched included cancer, carcinoma, family, family member, caregivers, and quality of life. Several criteria were used to guide the literature review: Articles had to be published in refereed journals and had to use rigorous methods, sample, and validated measures.
The findings suggested that the QOL of family caregivers of individuals with cancer varies along the illness trajectory. This highlights were importance of assessing the ongoing adjustment of the caregivers over time. However, there were few theory-driven studies, and significant gaps remain in the current understanding of the effects of family caregiving beyond the time of diagnosis and treatment.
Accumulating evidence has supported the concept that cancer affects not only the patients/survivors but also their family members. However, theoretically and methodologically rigorous research on various aspects of the family's QOL, including not only the psychological but also the physical, spiritual, and behavioral adjustment to cancer in the family, remains sparse. Family-based interventions across the trajectory of the illness also are needed.
Percent of population age 25 and over by educational achievement: 1940-2014. Retrieved from https://www.census.gov/topics
- U S Bureau
Cancer caregiving in the U.S.-An intense, episodic, and challenging care experience. Retrieved from http
- National Alliance For Caregiving
AARP introduces the "CARE Act" supporting 1.2 million family caregivers in Washington state
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The impact of a problem-solving intervention on increasing caregiver assistance and improving caregiver health
- P Sherwood
- B Given
- C W Given
- A Sikorkskii
- M You
- J Prince
Sherwood, P., Given, B., Given, C. W., Sikorkskii, A., You, M., & Prince, J. (2012).
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doi:10.1007/s00520-011-1295-5