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Family caregivers: Important but often poorly understood

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Abstract

Internationally, there are growing numbers of unpaid caregivers, with increasing numbers leaving paid work to provide care (National Academies of Sciences & Medicine 2016). Nomenclature for this role includes family, informal and unpaid caregivers as well as terms such as medical visit companion. This terminology in itself fails to encompass the importance of the role given the critical contribution to healthcare This article is protected by copyright. All rights reserved.

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... Te nurses spend most of their time with patients and their families and are heavily involved in the patient care process. Terefore, identifying and meeting social needs, assessing caregivers' preparedness, and providing appropriate and targeted interventions are appropriate [14,15]. For example, the use of medicinal plants such as Z. multifora (Avishan Shirazi), A. ofcinalis (Khatmi), H. vulgare (Jow), M. sylvestris (Panirak), M. chamomilla (Babooneh), A. sativum (Seer), G. glabra (Shirin-Bayan), and Z. ofcinale (Zanjabeel) among the people of Iran is very common to prevent or reduce the signs and symptoms and complications of COVID-19 [16]. ...
... Finally, the main concept was presented. Te subclasses, classes, and main concept (ii) Using favorite movies and music to change the patient's mood and distraction (p7, 8,9,10,14) (iii) Emphasis on giving the patient a spirit of resistance and hope (p1, 5, 6, 7, 10, 18) (iv) Emotion control (panic, stress, anxiety, and crying) next to the patient (p6, 7,8) (v) Improving the mental atmosphere and maintaining home silence to reduce patient stress (p1, 2,8,9,13,14) (i) Deviation of thoughts to improve the patient's mood (ii) Induction of positive energy to the patient ...
... Finally, the main concept was presented. Te subclasses, classes, and main concept (ii) Using favorite movies and music to change the patient's mood and distraction (p7, 8,9,10,14) (iii) Emphasis on giving the patient a spirit of resistance and hope (p1, 5, 6, 7, 10, 18) (iv) Emotion control (panic, stress, anxiety, and crying) next to the patient (p6, 7,8) (v) Improving the mental atmosphere and maintaining home silence to reduce patient stress (p1, 2,8,9,13,14) (i) Deviation of thoughts to improve the patient's mood (ii) Induction of positive energy to the patient ...
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This study aimed to evaluate the perception of family caregivers in the care process of patients with COVID-19. This study was conducted on 19 family caregivers, who were selected using purposive sampling from 2021 to 2022. Unstructured interviews were used to collect data. The data were analyzed using the Kyngas conventional content analysis approach. The analysis of data led to three main themes, including unremitting efforts in physical care in the light of traditional medicine, accuracy, and intelligence in psychological attention and trying to maintain environmental health. According to the results, family caregivers provide high levels of self-sacrificing, continuous, and comprehensive, combined with fear and loneliness care in different dimensions with little or no support from the family, community, and health team.
... Consequently, their needs are neglected, and health is compromised, and informal caregivers of Chinese ethnicities are susceptible to increased risks of caregiving distress [24]. Therefore, it is imperative to validate internationally recognized assessment tools that can measure the needs and distress perceptions of Chinese caregivers, facilitating cross-cultural comparisons, and enabling the development of interventions and support services that are sensitive to cultural differences [25]. ...
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Background This study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among informal Chinese caregivers of older adults, (2) identify predictors of caregiving distress in Asian regions with long-standing Confucian values of filial piety and family responsibility. Methods This cross-sectional study recruited 531 informal Chinese caregivers of older adults in Hong Kong, Shanghai, Taiwan, and Singapore. The scale reliability was examined using Cronbach’s alphas (α) and McDonald’s omega coefficient (ω). The concurrent validity and discriminant validity were assessed using Spearman rank correlations (rho). To examine the predictors of caregiving distress among informal caregivers of older adults, we employed hierarchical linear regression analyses informed by the Model of Carer Stress and Burden and categorized the predictors into six domains. Results Results revealed good internal consistency reliability (α = 0.83–0.96) and concurrent validity (rho = 0.45–0.74) of the interRAI Chinese SCaN assessment. Hierarchical linear regression analysis revealed that entering the background factors, primary stressors, secondary stressors, appraisal, and exacerbating factors all significantly enhanced the model’s predictability, indicating that the source of caregiving distress is multidimensional. In the full model, caregivers with longer informal care time, lack of support from family and friends, have unmet needs, experience role overload, have sleep problems, and low IADL functioning are at a higher risk of caregiving distress. Conclusions The interRAI Chinese SCaN Assessment was found to be a reliable and valid tool among the Chinese informal caregivers of older adults. It would be useful for determining family caregivers’ strengths, needs, and challenges, and tailoring interventions that address the potentially modifiable factors associated with caregiving distress and maximize support. Healthcare providers working in home and community settings should be aware of the early identification of caregiving distress and routine assessment of their needs and empower them to continue taking care of their needs and providing adequate care to the care recipient.
... Significantly, our interdisciplinary consultations changed the focus from educating FCGs about performing care tasks to the education the health workforce requires to support FCGs.When we began to examine ways to educate the professional health workforce to support FCGs, we found only a few references about the need for education to prepare health and social care providers to work with FCGs(Kelly et al., 2008;MacKean et al., 2005;Pruchno & Gitlin, 2012). More caregiving scholars are now recommending the development of FCG centred care competencies and competency-based education for health providers(Davidson, Abshire, Paull, & Szanton, 2018;Schulz et al., 2020;Schulz & Czaja, 2018;Schulz & Eden, 2016). However, Badovinac et al.'s (2019) review found few educational opportunities for health providers that centred on the supporting FCGs, nor had professional health workforce competencies been developed. ...
Article
Family caregivers (FCGs) are an integral part of the healthcare system. Currently, FCGs provide 70%-90% of the care required by community-dwelling children and adults living with complex chronic conditions and frailty. Despite FCG's contributions and the growing proportion of distressed caregivers, support for FCGs has not been a health system priority. Researchers have proposed training to enhance the competencies of health providers to work effectively with FCGs. In the absence of best practices for the competency indicators for caregiver-centred care, we have developed a competency framework for training the health workforce to support FCGs. The objectives in this paper are fourfold: (a) a brief review of stakeholder engagement that led to the development of the competencies the health workforce needs to support FCGs, (b) a description of the process used to name the competency domains, (c) a report on the Modified Delphi process (conducted 2019) used to validate the domain indicators, and (d) a description of the competency framework. We adopted a caregiver and a multilevel interdisciplinary stakeholder codesign approach throughout the competency development process. The competency domains include: (a) Recognising the Caregiver Role, (b) Communicating with FCGs, (c) Partnering with FCGs, (d) Fostering Resilience in FCGs, (e) Navigating Health and Social Systems and Accessing Resources, and, (f) Enhancing the Culture and Context of Healthcare. Our Caregiver-Centred Care Competencies for the health workforce are only a first step in supporting FCGs in their vital roles. There are few education and training resources to enable and empower health providers to support FCGs, there is an urgent need to develop training resources for the health workforce to recognise and support FCGs.
... We know that family caregivers play a significant role in supporting the overall health and wellbeing of those they care for, including those with physical or mental health conditions, disability, or frailty (Diminic et al., 2017;Knowles et al., 2016). However, there is only limited understanding of their role in supporting lifestyle change, and many caregivers report feeling excluded by services, despite the ongoing instrumental support they provide (Davidson et al., 2018). This is particularly evident for caregivers supporting people with SMI to address cardiovascular risk factors such as smoking, obesity and limited physical activity. ...
Article
Background: Family members play a pivotal role in supporting cardiovascular self-management-based care of community-living adults with severe mental illness (SMI). However, little is known about what strategies caregivers employ as part of their caring roles. Aim: This paper aims to explore what caregiving strategies work (or not), why and how by collating and synthesising existing evidence on this issue. Methods: A systematic search of peer-reviewed qualitative and mixed-method studies published between 2000 and 2019 was employed. This comprehensive process generated only nine papers for subsequent meta-synthesis of qualitative data. Results: Findings suggested that caregivers have a complex yet comprehensive role to play in initiating and perpetuating self-management-based cardiovascular care. The elements of recovery such as promoting hope, normality, autonomy and identity were flagged as critical underpinning factors that motivated the person with SMI to adopt a healthy lifestyle. However, it was evident that caregivers needed to walk alongside the person, at times, to help them reach their maximum potential in sustaining improved self-management behaviours. Conclusion: Caregivers sit in a favourable bridging position between healthcare systems and community-living individuals with SMI, to support their cardiovascular health. However, this powerful but invisible 'workforce' clearly needs further support involving finance, skill-development and acknowledgement.
... Family members reported physical and emotional exhaustion and felt undervalued by professionals (39). This might be because the role of family caregivers is still poorly understood (45). Therefore, it might be useful that centralised practices are being targeted at older patients and families with higher support needs, so to bring more family-centred support rather than service-centred support. ...
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Introduction In Europe, cancer is one of the predominant causes of mortality and morbidity among older people aged over 65. A diagnosis of cancer can imply a negative impact on the quality of life of the older patients and their families. Despite research examining the impact of cancer on the family, it is unclear what kind of information is available about the types of clinical practice towards older patients with cancer and their families. The aim is to determine the extent, range and variety of research in Europe describing health practices towards families of older patients with cancer and to identify any existing gaps in knowledge. Methods Scoping review. Results A total of 12 articles were included, showing that family interventions are generally based on end‐of‐life care. Most studies used a qualitative approach and involved different types of family member as participants. Most studies were conducted in the UK. Conclusions Review findings revealed limited knowledge about health practices in Europe towards families with an older patient with cancer. This review indicates a need to increase family‐focused research that examines health practices that meet the needs of families of older patients with cancer. Seeing cancer as a chronic disease, there is an urgent need for the implementation of family‐focused interventions.
... Furthermore, individuals who perform caregiver assessments should be knowledgeable about how a caregiver's culture and beliefs may influence self-reported unmet need, self-reported burden, and the acceptance (or reluctance) of community support services (Davidson, Abshire, Paull, & Szanton, 2018;Roberts & Struckmeyer, 2018). For example, given that Black caregivers are generally less likely than White caregivers to report high burden (Dilworth-Anderson et al., 2005;Janevic & Connell, 2001), it may be important to pay extra attention to Black caregivers who report high burden when identifying targets for programs and interventions addressing unmet need. ...
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Objectives: This study investigates the relationship of caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation to a self-reported measure of unmet need among U.S. informal caregivers of older adults living at home with various conditions. Methods: Response data from 1,558 caregiver participants interviewed by telephone during the December 2016 baseline period of the Outcome Evaluation of the National Family Caregiver Support Program were used. Caregivers who responded "Definitely No" to the question "Are you receiving all the help you need?" were classified as reporting unmet need. Logistic regression was used to find significant factors associated with unmet need among the full sample and among caregivers tiered by three levels of burden. Results: Unmet need was reported by 22% of the caregivers. In a fully adjusted model, unmet need was predicted by higher levels of caregiving intensity, non-White race of the caregiver, and the caregiver not feeling appreciated by their care recipient. Other predictors associated with unmet need were no use of caregiver educational services, fewer respite hours, not living in a rural area, and caregiver having an education past high school. Discussion: Caregivers who do not feel appreciated by their care recipient and non-White caregivers should be identified as potential targets for intervention to address unmet need, especially if they are also reporting higher levels of caregiver burden. Understanding the factors associated with self-reported unmet need can assist caregiver support programs in measuring and addressing the needs of informal caregivers to support their continued caregiving.
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Approaching the concept of family caregiving presupposes the analysis of different theoretical standpoints and public policy frameworks regarding family, state, or both family and state i.e. share responsibility to care, by identification of best practice model. Furthermore, the principles of solidarity, equity, particularly gender equity, having in mind that women’s involvement in caregiving is domi�nated, followed by holistic and human-centered approaches, need to be considered adequately, particularly as a part of the Building Back Better concept in the post�Covid period. The recent economic objectivities invoked by the international poli�cymakers before the Covid-19 crisis and settled as sustainable economic growth point to the importance of reducing socio-economic inequalities with respect to vulnerable populations such as, certainly, women and people with disabilities. By clarifying the socio-economic and legal status of family caregivers, in terms of uni�versal ethical values of the society, economic objectives, and legal principles, the inequality, discrimination, and exclusion issues of both categories of vulnerable populations could be addressed by targeting measures to mitigate the economic and social impact of the crisis on the most vulnerable ones. Given that, the paper aims to contribute to the ongoing scholarly debate of human rights and policy challenges regarding different categories of vulnerability in the social security sys�tems due to weaknesses of communities, countries, and institutional structures to recover from hazards and become more resilient to future disasters
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Every year tens of thousands of older Canadians travel to the southern United States (US) to live there seasonally during the winter months to enjoy a warmer climate—a practice known as international retirement migration. Several factors facilitate participation in this transnational mobility, including having the financial resources needed to live abroad. For those managing chronic or acute health conditions, traveling with a caregiver (typically a spouse) is another important facilitator. In this qualitative analysis, we explore the transnational systems of support that Canadian international retirement migrant spousal caregivers draw upon to enable them to provide care while in the US. We report on the findings of ten semi‐structured dyad interviews (n = 20 participants) conducted with Canadian international retirement migrants living seasonally in Yuma, Arizona. The dyads consisted of spouses, one of whom had defined care needs and the other of whom provided informal care. Through thematic analysis of these interviews, we identified three types of transnational support systems that spousal caregivers draw on: relational, community‐based and practical. While aspects of these support systems have been documented in other informal care‐giving studies, this analysis demonstrates their copresence in the transnational care‐giving context associated with international retirement migration. Overall, this analysis highlights the benefits of close social relations enjoyed by international retirement migrants providing informal care to mitigate the lack of access to their established support networks at home.
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Introducción El incremento del número de personas adultas, en situación de dependencia, discapacidad y con necesidades de cuidado, ha generado el surgimiento de los cuidadores familiares, quienes asumen esta responsabilidad, sin la formación o conocimientos previos, situación que puede comprometer el desempeño de este nuevo rol y sus resultados en el receptor de cuidado. Materiales y Métodos Se realizó un Scoping Review con la metodología de Arksey y O'Malley, que incluyó la revisión de los estudios disponibles en bases de datos en línea, en idioma inglés y español, a partir de lo cual se extrajo información relacionada con la asunción del rol de cuidador familiar novel de adultos en situación de dependencia. Resultados Se incluyeron un total de 42 artículos y surgieron cinco temas; que incluyen, las tendencias sociodemográficas, la trayectoria y dinámicas a lo largo del tiempo, las transiciones que implica el nuevo rol, la participación en la toma de decisiones y los dominios e impactos en quien ejerce el cuidado. Discusión Se evidenció que ejercer el rol de cuidador familiar novel de personas en situación de dependencia, implica adquirir una serie de competencias, conocimientos, y habilidades, además; de requerir un adecuado soporte social, aspectos que deben ser explorados, reconocidos y abordados por Enfermería. Conclusiones Este estudio proporciona información para comprender las experiencias e implicaciones que tiene convertirse en cuidador novel, de forma que los profesionales de la salud adapten las intervenciones destinadas a apoyar a los cuidadores y mejorar su bienestar.
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Objective Given the stressful and emotional nature of cancer, challenging interactions between nurses, patients, and family frequently occur. Nurses are rarely equipped with strategies to avoid or de-escalate stressful situations with carers, which can include displays of conflict, anger, or dominance. A brief online education module (TRIO-Conflict) was developed to provide nurses with management strategies to use in situations of conflict. This study aimed to assess the feasibility, acceptability, and potential efficacy of TRIO-Conflict. Methods Nurses were recruited through an Australian breast cancer organisation (McGrath Foundation). Participants completed pre/post module measures of attitudes towards carers, confidence in their skills to effectively navigate challenging interactions with carers, and applied knowledge of management strategies. Data were analysed using Wilcoxon signed-rank tests. Qualitative feedback was analysed using content analysis. Results 52 nurses completed pre-/post- measures, with 4 semi-structured interviews conducted. Significant improvements in attitudes towards carers (p=.010) and confidence in one’s own ability to manage challenging interactions with carers (p<.001) were found, but not knowledge of strategies. Most nurses found TRIO-Conflict very/extremely helpful (87%) and were satisfied with content (94%) and usability (93%). Conclusion TRIO-Conflict utilised evidence-based learning techniques (provision of example phrases, video vignettes, reflective exercises) to improve nurses attitudes and confidence. Practice Implications TRIO-Conflict is a brief, targeted, clinically relevant, and easily accessible online training program which could be widely disseminated to oncology nurses.
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Aims and objectives To explore the meaning of maternal caregiving in the Chinese culture for children newly diagnosed with acute lymphocytic leukemia (ALL). Background Recurrence of and death associated with ALL remain the main concerns for mothers. Mothers experience guilt and anxiety towards their child's cancer. Design Descriptive phenomenological study. Methods Twelve mothers were recruited from a medical centre in Central Taiwan. The mothers were primary caregivers for their child diagnosed as having ALL in the past 3 months to 1 year. Data were collected through semi-structured interviews and analysed using Colaizzi's method. Results Four main themes emerged: feeling this world crashing by knowing the diagnosis, feeling the double-edged sword of mothering, worrying about potential risks for their vulnerable child, and passing through difficulties with power of support. Conclusions Most mothers felt this world crashing due to potential loss of their child and seeing their child's suffering. The mother was blamed for her child's cancer but was also required to shoulder all caregiving for their child. The mothers needed to compromise their lives to protect their child from potential infection. Perceived power of support helped the mothers overcome difficulties. Relevance to clinical practice Findings support that nurses encouraging mothers to tell their stories, regardless of culture, will facilitate healing. Establishing trust and providing support from nurses, physicians, psychologists and social workers will lead mothers' readiness to deal with care of their sick child. Increasing visiting time for parental support for children hospitalized in the PICU is suggested as well.
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Background: Establishing priorities for discussion during time-limited primary care visits is challenging in the care of patients with cognitive impairment. These patients commonly attend primary care visits with a family companion. Objective: To examine whether a patient-family agenda setting intervention improves primary care visit communication for patients with cognitive impairment DESIGN: Two-group pilot randomized controlled study PARTICIPANTS: Patients aged 65 + with cognitive impairment and family companions (n = 93 dyads) and clinicians (n = 14) from two general and one geriatrics primary care clinic INTERVENTION: A self-administered paper-pencil checklist to clarify the role of the companion and establish a shared visit agenda MEASUREMENTS: Patient-centered communication (primary); verbal activity, information disclosure including discussion of memory, and visit duration (secondary), from audio recordings of visit discussion RESULTS: Dyads were randomized to usual care (n = 44) or intervention (n = 49). Intervention participants endorsed an active communication role for companions to help patients understand what the clinician says or means (90% of dyads), remind patients to ask questions or ask clinicians questions directly (84% of dyads), or listen and take notes (82% of dyads). Intervention dyads identified 4.4 health issues for the agenda on average: patients more often identified memory (59.2 versus 38.8%; p = 0.012) and mood (42.9 versus 24.5%; p = 0.013) whereas companions more often identified safety (36.7 versus 18.4%; p = 0.039) and personality/behavior change (32.7 versus 16.3%; p = 0.011). Communication was significantly more patient-centered in intervention than in control visits at general clinics (p < 0.001) and in pooled analyses (ratio of 0.86 versus 0.68; p = 0.046). At general clinics, intervention (versus control) dyads contributed more lifestyle and psychosocial talk (p < 0.001) and less biomedical talk (p < 0.001) and companions were more verbally active (p < 0.005). No intervention effects were found at the geriatrics clinic. No effect on memory discussions or visit duration was observed. Conclusion: Patient-family agenda setting may improve primary care visit communication for patients with cognitive impairment. Trial registration: ClinicalTrials.gov : NCT02986958.
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Background: Caregivers may promote the uptake of science into patient care and the practice of evidence-informed medicine. The purpose of this study was to determine whether caregiver-mediated (non-clinical caregiver-delivered) interventions are effective in improving patient, caregiver, provider, or health system outcomes. Methods: We searched the MEDLINE, Embase, PsycINFO, Cumulative Index of Nursing and Allied Health, and Scopus databases from inception to February 27, 2017. Interventions (with a comparison group) reporting on a quality improvement intervention mediated by a caregiver and directed to a patient, in all ages and patient-care settings, were selected for inclusion. A three-category framework was developed to characterize caregiver-mediated interventions: inform (e.g., provide knowledge), activate (e.g., prompt action), and collaborate (e.g., lead to interaction between caregivers and other groups [e.g., care providers]). Results: Fifty-six studies met the inclusion criteria, and 64% were randomized controlled trials (RCTs). The most commonly assessed outcomes were patient- (n = 40) and caregiver-oriented (n = 33); few health system- (n = 10) and provider-oriented (n = 2) outcomes were reported. Patient outcomes (e.g., satisfaction) were most improved by caregiver-mediated interventions that provided condition and treatment education (e.g., symptom management information) and practical condition-management support (e.g., practicing medication protocol). Caregiver outcomes (e.g., stress-related/psychiatric outcomes) were most improved by interventions that activated caregiver roles (e.g., monitoring blood glucose) and provided information related to that action (e.g., why and how to monitor). The risk of bias was generally high, and the overall quality of the evidence was low-moderate, based on Grading of Recommendations Assessment Development and Evaluation ratings. Conclusions: There is a large body of research, including many RCTs, to support the use of caregiver-mediated interventions that inform and activate caregivers to improve patient and caregiver outcomes. Select caregiver-mediated interventions improve patient (inform-activate) and caregiver (inform-activate-collaborate) outcomes and should be considered by all researchers implementing patient- and family-oriented research. Systematic review: PROSPERO, CRD42016052509 .
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Importance Few randomized clinical trials have been conducted with ethnic/racial minorities to improve shared decision making (SDM) and quality of care. Objective To test the effectiveness of patient and clinician interventions to improve SDM and quality of care among an ethnically/racially diverse sample. Design, Setting, and Participants This cross-level 2 × 2 randomized clinical trial included clinicians at level 2 and patients (nested within clinicians) at level 1 from 13 Massachusetts behavioral health clinics. Clinicians and patients were randomly selected at each site in a 1:1 ratio for each 2-person block. Clinicians were recruited starting September 1, 2013; patients, starting November 3, 2013. Final data were collected on September 30, 2016. Data were analyzed based on intention to treat. Interventions The clinician intervention consisted of a workshop and as many as 6 coaching telephone calls to promote communication and therapeutic alliance to improve SDM. The 3-session patient intervention sought to improve SDM and quality of care. Main Outcomes and Measures The SDM was assessed by a blinded coder based on clinical recordings, patient perception of SDM and quality of care, and clinician perception of SDM. Results Of 312 randomized patients, 212 (67.9%) were female and 100 (32.1%) were male; mean (SD) age was 44.0 (15.0) years. Of 74 randomized clinicians, 56 (75.7%) were female and 18 (4.3%) were male; mean (SD) age was 39.8 (12.5) years. Patient-clinician pairs were assigned to 1 of the following 4 design arms: patient and clinician in the control condition (n = 72), patient in intervention and clinician in the control condition (n = 68), patient in the control condition and clinician in intervention (n = 83), or patient and clinician in intervention (n = 89). All pairs underwent analysis. The clinician intervention significantly increased SDM as rated by blinded coders using the 12-item Observing Patient Involvement in Shared Decision Making instrument (b = 4.52; SE = 2.17; P = .04; Cohen d = 0.29) but not as assessed by clinician or patient. More clinician coaching sessions (dosage) were significantly associated with increased SDM as rated by blinded coders (b = 12.01; SE = 3.72; P = .001; Cohen d = 0.78). The patient intervention significantly increased patient-perceived quality of care (b = 2.27; SE = 1.16; P = .05; Cohen d = 0.19). There was a significant interaction between patient and clinician dosage (b = 7.40; SE = 3.56; P = .04; Cohen d = 0.62), with the greatest benefit when both obtained the recommended dosage. Conclusions and Relevance The clinician intervention could improve SDM with minority populations, and the patient intervention could augment patient-reported quality of care. Trial Registration clinicaltrials.gov Identifier: NCT01947283
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Objective To describe and explain stroke survivors and informal caregivers’ experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services. Design Systematic review and meta-ethnography. Data sources Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015). Eligibility criteria Primary qualitative studies focused on adult community-dwelling stroke survivors’ and/or informal caregivers’ experiences of primary care and/or community healthcare services. Data synthesis A set of common second order constructs (original authors’ interpretations of participants’ experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods’ criteria. Results 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke. Limitations Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems. Conclusions Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services. Systematic review registration number PROSPERO 2015:CRD42015026602
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Aims and objectives: To review the literature concerning the feelings, thoughts and behaviours of nurses and family caregivers of hospitalised older persons when they communicate with one another. Background: Communication between nurses and family caregivers of hospitalised older persons is not always optimal. Improving the frequency and quality of this communication might be a way to make the most of available human capital in order to better care for hospitalised older people. Design: A literature review was carried out of qualitative, quantitative and mixed-design studies relating to communication between nurses and family caregivers. Findings were analysed thematically. Results: Family caregiver thoughts, feelings and behaviours relative to nurse control and authority, nurse recognition of their contribution, information received from and shared with nurses and care satisfaction could influence communication with nurses. Nurse thoughts regarding usefulness of family caregivers as care partners and their lack of availability to meet family caregiver demands could influence communication with family caregivers. Conclusions: The thoughts, feelings and behaviours of family caregivers and nurses that might create positive or negative circular patterns of communication are evidenced. Further research is required to gain a more comprehensive understanding of the phenomenon. Relevance to clinical practice: Nurses must be trained in how to communicate with family caregivers in order to form a partnership geared to preventing complications in hospitalised older persons. Results could be used to inform policy regarding the care of hospitalised older persons.
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Objective: The aim of this study was to compare the efficacy of two approaches: multicomponent interventions that focus on working with the carer and dyadic interventions that work with both the carer and the person with dementia. Method: A systematic review involving a search of Medline, EMBASE, and PsycINFO in October 2015 was performed. Randomized controlled trials involving carers of people with dementia and comparing multicomponent interventions with usual care were included. Results: Pooling of all studies demonstrated that multicomponent interventions can reduce depressive symptoms, improve quality of life, reduce carer impact, and reduce behavioral and psychological symptoms of dementia as well as caregiver upset with these symptoms. We were unable to find a significant difference in the effects of dyadic interventions in comparison with carer focused interventions for these outcomes. Discussion: Although effect sizes associated with intervention are small, multicomponent interventions are relatively inexpensive to deliver, acceptable, and widely applicable.
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Heart failure (HF) is a frequent condition in the elderly and mortality is high. This study sought to describe the profile of those providing care in the community and their needs. The South Australian Health Omnibus is an annual, random, face-to-face, cross sectional survey conducted within the state. Having standardized data to the whole population, the study describes the subset of the population who identify that they actively cared for someone at the end of life with HF in the five years before survey administration. Three hundred and seventy three respondents (2.0% of the whole population; 4.9% of caregivers) reported being a caregiver of someone with HF. There were 84 active caregivers (day-to-day or intermittent hands on caregivers) for people with HF. Mean age for caregivers for those with HF was much higher than other caregivers (55.7 vs 49.4; p < 0.001) with care lasting for an average of 48.9 months (SD 66.2). People caring for those with HF were far less likely to access specialist palliative care services (38.1% vs 60.9%; p < 0.0001) despite having much greater levels of unmet needs for physical care 28.3% vs 14.1%; p = 0.008). Study findings suggest that there is a significant burden placed on caregivers for people with HF over extended periods in the community. There are differences in access to services for these caregivers compared to those dying from other conditions, particularly cancer.
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Background: Compared with other chronic illness populations, relatively little is known about heart failure (HF) patient and caregiver spousal/partner dyads and what effect dyadic interactions have on self-care. Objective: The aim of this study was to present a new typology of patient and caregiver dyadic interdependence in HF care, presenting exemplar cases of each type: patient oriented, caregiver oriented, collaboratively oriented, complementarily oriented. Methods: Stake's instrumental case study methodology was used. Interviews were unstructured, consisting of open-ended questions exploring dyad's experiences with HF, audiorecorded, and transcribed. Cases were selected because they exhibited the necessary characteristics and also highlighted a unique, little understood variation in self-care practice. Each case represents a dyad's discussion of caring for HF in their normal environment. Results: From 19 dyads, 5 exemplar case studies illustrate the 4 dyadic types. A fifth, incongruent case, defined as a case where the patient and caregiver indicated incongruent dyadic types, was included to highlight that not all dyads agree on their type. A major theme of Sharing Life infused all of the dyad's narratives. This typology advances the science of dyadic interdependence in HF self-care, explains possible impact on outcomes, and is an early theoretical conceptualization of these complex and dynamic phenomena. Conclusion: The cases illustrate how long-term dyads attempt to share the patient's HF care according to established patterns developed over the trajectory of their relationship. In keeping with the interdependence theory, these couples react to the patient's declining ability to contribute to his/her own care by maintaining their habitual pattern until forced to shift. This original pattern may or may not have involved the dyad working together. As the patient's dependence on the caregiver increases, the caregiver must decide whether to react out of self-interest or the patient's interest. Continued study of the typology is needed in nonspousal/partner dyads.
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To understand family caregivers' needs for better preparation and care, this state-of-the-science review examines the effect of caregiving on the health and well-being of caregivers, the efficacy of research-tested interventions on patient and caregiver outcomes, implications of the research on policy and practice, and recommendations for practice and future research. We reviewed research that described the multiple effects of cancer on caregivers' well-being. Five meta-analyses were analyzed to determine the effect of interventions with caregivers on patient and caregiver outcomes. In addition, we reviewed legislation such as the Affordable Care Act and the Family Leave Act along with current primary care practice to determine whether family caregivers' needs have been addressed. Research findings indicate that caregiver stress can lead to psychological and sleep disturbances and changes in caregivers' physical health, immune function, and financial well-being. Research-tested interventions delivered to caregivers of patients with cancer or other chronic illnesses can reduce many of these negative effects and improve caregivers' coping skills, knowledge, and quality of life. Although these interventions also decrease patients' symptoms, reduce mortality (non-dementia patients), and improve patients' physical and mental health, they are seldom implemented in practice. Recommendations for practice include development of standardized guidelines that address caregiver assessment, education, and resources; identification of "caregiver champions" in practice settings; provision of referrals to established support organizations for caregivers (eg, Cancer Support Community, Cancer Care); and collaboration among caregiving, professional, and cancer-related organizations to advocate policy and practice changes for family caregivers.
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This review explores the specific issues that cluster around the provision of 'care' in the context of the global HIV/AIDS pandemic. We argue that the economic concept of the 'care economy' provides a useful lens through which to view the HIV/AIDS pandemic, as it illuminates the increased labour, time and other demands placed upon households and shows that the assumptions on which norms and expectations of care provision are based are increasingly being challenged. While some strides are being made in policy and programming around HIV and AIDS-related care, much more needs to be known and done to enable individuals, families and households to survive in a world shaken by AIDS. Care, we argue, provides fundamental public goods. A strategy of simply downloading responsibility for care onto women, families and communities can no longer be a viable, appropriate or sustainable response. And this is no less true in this current era of expanding treatment options for people living with HIV and AIDS. Our analysis suggests that there are two distinct but inter-related areas for policy intervention and development. The first concerns international health policy and we argue that the international 'care agenda' needs to incorporate an understanding of the care economy into its frameworks and strategies for action, giving particular focus to the caregiver. The second area encompasses a broad national healthcare policy agenda, where a range of public, private and non-governmental sector actors come together with common purpose to ensure that households affected by HIV and AIDS are protected and enabled to survive.
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To test a model of family caregiving derived from the interactionist approach to role theory that hypothesized that three caregiving role implementation variables (caregiving demand, mutuality between caregivers and patients, and preparedness for caregiving) would predict multiple caregiving-specific and generic outcomes with different patterns of association across outcomes. Descriptive, correlational. Surgical, radiation, and medical oncology settings. 87 family caregivers of adults receiving treatment for solid tumors or lymphoma. Caregivers completed the Demand and Difficulty subscales of the Caregiving Burden Scale; the Mutuality, Preparedness, and Global Strain scales of the Family Care Inventory; and the 30-item short form of the Profile of Mood States. Data were analyzed with simultaneous multiple regression. Caregiving demand, mutuality, preparedness, caregiving difficulty, global caregiver strain, tension, depression, anger, fatigue, vigor, confusion, and total mood disturbance. The model explained statistically significant proportions of variance in each outcome, with different patterns of association across outcomes. Demand was associated most strongly with caregiving difficulty and global strain. Mutuality was associated most strongly with caregiver anger. Unexpectedly, preparedness was associated more strongly with mood disturbance outcomes than with the caregiving-specific variables of difficulty and strain. Further research should explore models that address implementation of the caregiving role to better elucidate how family caregivers learn and carry out the important role. Clinical assessment should include caregiving demand, the quality of the relationship between caregiver and patient, and preparedness for caregiving. Interventions could be tailored to meet caregiver needs in each area.
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Caregiving is usually associated with adults’ responsibilities. Official statistics and research have demonstrated, however, that many children and young people in the global North and South have substantial, regular caring responsibilities for family members with chronic illnesses, impairments, or other care needs. This chapter conceptualizes children’s roles as “caregivers” and the care work they do. It then analyzes the available evidence on outcomes of children’s caregiving and the factors and processes influencing their involvement. While research reveals that caregiving may have positive as well as negative outcomes for children’s well-being, formal and informal safety nets are needed, especially in resource-limited settings, to alleviate children’s care work. Children’s and families’ experiences suggest that social protection measures and support for those being cared for as well as those providing care would help to ensure that caregiving does not have long-term negative impacts on children’s personal development, education, health, family relations, peer interactions, social participation, employment opportunities, and socially expected transitions to adulthood.
Article
Background: The prevalence of heart failure is increasing in Lebanon but to date there is no systematic evaluation of a disease management intervention. Objective: The aim of this study was to evaluate the effect of involving family caregivers in the self-care of patients with heart failure on the risk of hospital readmission. Design: A multi-site, block randomised controlled trial. Settings: The study was conducted over a 13-month period in three tertiary medical centres in Beirut and Mount Lebanon, Lebanon. Participants: Adult patients presenting for an exacerbation of heart failure to one of the study centres were included. Patients with limited life expectancy or physical functionality, planned cardiac bypass or valve replacement surgery, living alone or in nursing homes, or aged less than 18 years were excluded. Methods: Patients allocated to the intervention group and their family caregivers were provided with a comprehensive, culturally appropriate, educational session on self-care maintenance and symptom management along with self-care resources. The usual care group received the self-care resources only. Follow-up phone calls were conducted 30days following discharge by a research assistant blinded to treatment assignment. The primary outcome was hospital readmission and the secondary outcomes were self-care, quality of life, major vascular events and healthcare utilization. Results: The final sample included 256 patients hospitalized for heart failure randomised into control (130 patients) and intervention (126 patients) groups. The mean age was 67 (SD=8)years, and the majority (55%) were male. Readmission at 30days was significantly lower in the intervention group compared to the control group (n=10, 9% vs. n=20, 19% respectively, OR=0.40, 95% CI=0.02, 0.10, p=0.02). Self-care scores improved in both groups at 30days, with a significantly larger improvement in the intervention group than the control group in the maintenance and confidence sub-scales, but not in the self-care management sub-scale. No differences were seen in quality of life scores or emergency department presentations between the groups. More patients in the control group than in the intervention group visited health care facilities (n=24, 23% vs. n=12, 11% respectively, OR=0.39, 95% CI=0.18, 0.83, p=0.01). Conclusion: The trial results confirmed the potential of the family-centred self-care educational intervention under evaluation to reduce the risk of readmission in Lebanese patients suffering from exacerbated heart failure. Further research is needed to validate these findings with longer periods of follow-up and to identify the intervention components and intensity required to induce sustained benefits on patients' self-care management and quality of life.
Article
Purpose of study: To assess trends in family caregiving between 1999 and 2015. Design and methods: We construct nationally representative profiles of community-dwelling older adults receiving help with self-care or indoor mobility and their "primary" family or unpaid caregiver using the 1999 and 2004 National Long Term Care Survey, 2011 and 2015 National Health and Aging Trends Study, and linked caregiver surveys. Trends are examined. Results: Older adults receiving help were incrementally younger, more racially diverse, and better educated in 2015. Primary caregivers overwhelmingly continued to be spouses and adult children. Arrangements were increasingly 4 years or longer in duration (shifting from 44.8% in 1999 to 60.5% by 2015). On average, primary caregivers provided about or in excess of 30 hr per week at all four time points. Spouses provided fewer hours of care, were twice as likely to work, and half as likely to report substantial emotional, physical, and financial difficulty due to caregiving in 2015 than 1999. Adult children provided comparable hours of care to a more impaired population; a similar proportion reported substantial caregiving-related difficulty at each time. Use of respite care nearly doubled from 8.5% in 1999 to 15.7% in 2015. Dementia caregivers were less likely to report substantial physical and financial difficulty and more likely to use respite care in 2015 than 1999. Implications: Family caregivers' circumstances generally improved during the 16-year period. Results diverge from prevailing concerns regarding the state of family caregiving and demonstrate the importance of longitudinally monitoring trends in late-life family caregiving.
Article
This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology. An analysis of 810 citations resulted in 50 randomized trials. These trials describe the need to prepare family caregivers for the complex role they play in cancer care. Several studies have demonstrated improved quality of life for family caregivers and improved emotional support from interventions. Several studies addressed communication and relational intimacy, which are key concerns. An additional focus of these trials was in the area of caregiving tasks and ways to diminish the burden of caregiving and preparedness for this role. Further research is needed in this area given the shift to outpatient care and as family caregivers become the primary providers of care. Future research should include expanding tested models of family caregiver support in clinical practice and in diverse populations. CA Cancer J Clin 2017.
Article
Purpose As the population ages, older adults are more often living with functional limitations from chronic illnesses, such as stroke, and require assistance. Because stroke occurs suddenly, many stroke family caregivers in the United States are unprepared to assume caregiving responsibilities post-discharge. Research is limited on how family members become ready to assume the caregiving role. In this study, we developed a theoretical model for improving stroke caregiver readiness and identifying gaps in caregiver preparation. Design and Methods We interviewed 40 stroke family caregivers caring for 33 stroke survivors during inpatient rehabilitation and within 6 months post-discharge for this grounded theory study. Data were analyzed using dimensional analysis and constant comparative techniques. Results Caregivers identified critical areas where they felt unprepared to assume the caregiving role after discharge from inpatient rehabilitation. Steps to improve preparation include (a) conducting a risk assessment of the patient and caregiver; (b) identifying and prioritizing gaps between the patient’s needs and caregiver’s commitment and capacity; and (c) developing a plan for improving caregiver readiness. Implications The model presented provides a family-centered approach for identifying needs and facilitating caregiver preparation. Given recent focus on improving care coordination, care transitions, and patient-centered care to help improve patient safety and reduce readmissions in this population, this research provides a new approach to enhance these outcomes among stroke survivors with family caregivers.
Article
Background Nonpharmacologic strategies to manage dementia-related behavioral symptoms depend upon caregiver implementation. Caregivers may vary in readiness to use strategies. We examined characteristics associated with readiness, extent readiness changed during intervention, and predictors of change in readiness. Methods Data came from a randomized trial involving 119 caregivers in a nonpharmacologic intervention for managing behavioral symptoms. Baseline measures included caregiver, patient, and treatment-related factors. At initial (2weeks from baseline) and final (16weeks) intervention sessions, interventionists rated caregiver readiness as pre-action (precontemplation=1; contemplation=2; preparation=3) or action (=4). Ordinal logistic regression identified baseline characteristics associated with initial readiness. Mc Nemar-Bowker test of symmetry described change in readiness; binary logistic regression identified baseline predictors of change in readiness (initial to final sessions). One-way multivariate analysis of variance identified treatment factors (dose/intensity, number of strategies used, perceived benefits, and therapeutic engagement) associated with change in readiness. ResultsAt initial intervention session, 67.2% (N=80) of caregivers were in pre-action and 32.8% (N=39) in action. Initial high readiness was associated with better caregiver mood, less financial difficulty, lower patient cognition, and more behavioral symptoms. By final session, 72% (N=79) were in action and 28% (N=31) in pre-action; caregivers with less financial difficulty improved in readiness (B=-0.70, p=0.017); those in action were more therapeutically engaged (F[2,107]=3.61, p=0.030) and perceived greater intervention benefits (F[2, 88]=6.06, p=0.003). Conclusion Whereas patient and caregiver-related factors were associated with initial readiness, financial stability, therapeutic engagement, and perceived benefits enhanced probability of change. Understanding caregiver readiness and factors associated with its change may be important considerations in nonpharmacologic interventions. Copyright (c) 2013 John Wiley & Sons, Ltd.
Article
The present meta-analytic study gives a systematic review of research on depression and the subjective well-being of caregivers. We integrate results from 60 studies on informal caregivers' subjective well-being (e.g., positive affect, life-satisfaction) and contrast them with the result of studies on caregiver depression. Analyses were based on a two-factor model of subjective well-being that distinguishes between positive and negative dimensions of well-being (e.g., happiness and depression). The strongest effects were domain-specific: uplifts of caregiving were associated with subjective well-being and caregiving stressors were associated with depression. In addition, weaker effects that crossed domains were present: uplifts were weakly associated with depressive symptoms. In addition, lower levels of caregivers' subjective well-being were weakly related to care receivers' physical and cognitive impairments, as well as behaviour problems, but not to the amount of caregiving. Type of care recipients' illness and the measure of well-being moderated, in part, the association between stressors/uplifts and subjective well-being.
Article
Family caregiving researchers have explored the moderating or stress-buffering effects of variables such as coping and social support. However, the quality of the family caregiver-patient relationship and preparedness for caregiving have received little attention as potential moderators. To explore whether relationship quality and preparedness moderate the effects of caregiving demand on caregiver outcomes during cancer treatment. Eighty-seven family caregivers of patients receiving treatment for cancer completed the Demand and Difficulty subscales of the Caregiving Burden Scale, Mutuality and Preparedness Scales of the Family Care Inventory, and the short form of the Profile of Mood States. Using hierarchical multiple regression analyses, caregiving difficulty and total mood disturbance were regressed on two- and three-way interaction terms for demand, mutuality, and preparedness, controlling for caregiver age and gender, and the simple effect of each independent variable. Negligible effects for two-way interactions were found. However, the three-way interaction between demand, mutuality, and preparedness explained statistically significant variance in both perceived difficulty of caregiving and total mood disturbance. High mutuality in combination with high preparedness protected caregivers from adverse outcomes when demand was high. When either mutuality or preparedness was low, caregivers were at greater risk for negative outcomes when demand was high, but not when demand was low. When both mutuality and preparedness were low, caregivers were at risk for mood disturbance even when demand was low. Analysis of three-way interactions provided new theoretical insights into the protective effects of mutuality and preparedness and demonstrated conditions under which caregivers are at increased risk for negative outcomes.
Policy Brief-Why is Uptake of the Disability Tax Credit Low in Canada? Exploring Possible Barriers to Access
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