[Show abstract][Hide abstract] ABSTRACT: Literature has shown the serious impact of severe mental illness on the daily life of caregivers. We studied reported caregiver support practices by mental health nurses for use in the development of a nursing intervention. We aimed to explore current caregiver support practices by mental health nurses.
Twenty-one participants completed semi-structured interviews, and 17 participants attended two focus groups. All interviews were audio-taped, transcribed and coded for qualitative analysis.
The diversity in caregiver support could best be described by three prototypes: the tolerator, the preventer and the concerner, representing three approaches of involvement with caregivers. At one end of the spectrum are mental health nurses (MHN) who are essentially only concerned with the wellbeing of the care recipient and see the caregiver as a potential impediment in reaching the client's goals. We call these the tolerators. At the other end of the spectrum are the MHNs who see the caregiver and the care recipient as inextricably connected with each other. In these cases the MHN directs her/his intervention towards both the informal caregiver and the care recipient. We call these the concerners. In the middle position are MHNs who realize that caregivers are important agents in the achievement of the client's goals, and therefore consider preventing them from becoming overburdened as an important goal. We call these the preventers.
Based on the extent to which the MHNs believe that the informal caregiver plays a necessary role in the client's support system, and the degree to which they feel responsible for the caregiver's wellbeing, three MHN prototypes can be distinguished. These prototypes determine how the nurses' vision directs their understanding of their role and responsibilities and the content of their behaviour. This implies that a change in behaviour needs to be preceded by a change in vision. Therefore, promoting family support cannot be achieved by one-size-fits-all-programmes.
[Show abstract][Hide abstract] ABSTRACT: In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents' actions in expressing and handling of "the voice of the child."
A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase. A thematic analysis was conducted.
The "voice of the child" becomes manifest in the parents' expressions of the child's needs and perceptions. Parents who actively searched to understand their child's inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child's perspective. An inability to take into account the child's perspective was largely due to the parents' own struggle to cope with loss.
Whether or not the voice of children approaching the end-of- life is heard, often depends on their parents' ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents', ability to cope. (PsycINFO Database Record
(c) 2015 APA, all rights reserved).
Health Psychology 04/2015; 34(4):446-452. DOI:10.1037/hea0000166 · 3.95 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Nonadherence in cancer patients taking oral anticancer drugs is common. Reasons for nonadherence are still not really understood as influencing factors are often complex, dynamic, and interrelated.
A qualitative study was conducted to gain insight into (non-)adherence behavior in patients taking oral tyrosine kinase inhibitors by exploring (1) processes and factors influencing (non-)adherence and (2) their interrelatedness.
Semistructured interviews were held with 30 patients of different ages and with different types of cancer. A grounded theory approach was used.
Three foci were found when dealing with oral tyrosine kinase inhibitors: (1) a focus on survival, (2) a focus on quality of life, and (3) a balance between survival and quality of life. The process of adherence was determined by a set of complex and interrelated influencing factors: treatment-related side effects, hope, anxiety, trust, and feedback mechanisms.
This qualitative study gives insight into processes and factors influencing (non-)adherence behavior in patients taking oral tyrosine kinase inhibitors. The results of this study can help healthcare professionals understand why patients taking oral tyrosine kinase inhibitors do not always adhere to their therapy.
Conditions should be created by which patients get maximum opportunity to establish a balance between survival and quality of life. An open climate and a trust-based relationship should be established in which patients feel comfortable to openly discuss their therapy and the difficulties they experience.
Cancer Nursing 03/2015; Publish Ahead of Print. DOI:10.1097/NCC.0000000000000250 · 1.93 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The first generation of immigrants to Belgium from Turkey and Northwest Africa are aging and at risk for developing cancer. Family members play an important role in both illness and old age.
The objective of this study was to gain insight into experiences and perceptions of families with Turkish or Northwest African backgrounds who were caring for cancer patients older than 50 years in Flanders, Belgium.
A qualitative research design with elements of constructivist grounded theory was used. Twenty-eight loosely structured interviews were conducted. Three researchers were involved in data analysis (researcher triangulation), and 6 conversations took place with experts.
Cancer appeared to be a family matter. Caregiving had a strong moral meaning for all participants, particularly for children providing care to a parent. Caregiving could be described as "guiding": family members led the patient through, or familiarized the patient with, the healthcare system. There were strong differences in the extent to which family members believed they should provide care, as well as the kind of professional care considered desirable.
Despite shared values of the importance of family and family caregiving, concrete ideas about caregiving differed considerably. The findings imply that shared cultural or religious normative values do not predict day-to-day care practices.
This study provides new insights into the moral and practical meaning of caregiving, which will help professionals understand the roles adopted by family members. Furthermore, individualized approaches to care appear to be essential, because concrete ideas about informal caregiving differ strongly despite shared values.
Cancer Nursing 02/2015; Publish Ahead of Print. DOI:10.1097/NCC.0000000000000239 · 1.93 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Luisteren naar hun levensverhalen als hefboom voor een goede zorg.
Oudere mensen hebben een rijk gevuld leven achter de rug en dragen een schat aan verhalen met zich mee. Wanneer deze ouderen terminaal ziek worden, kan hun levensverhaal precies een houvast zijn voor hun zorgverleners.
In Zorgen voor zieke ouderen tot het einde vormen levensverhalen een krachtig kompas om kwetsbare ouderen beter te begrijpen. Tegelijk biedt het boek ook talrijke handvatten om de zorg te laten aansluiten bij het leven dat ouderen en mantelzorgers binnen familieverband in zich hebben.
[Show abstract][Hide abstract] ABSTRACT: Background
Despite the growing incidence of cancer among older people, little is understood about how older patients and their family caregivers experience receiving a cancer diagnosis and treatment and how their experiences mutually influence each other. Such knowledge is needed to provide meaningful support for both the older person and family caregivers.
Exploring lived experiences of older cancer patients, family caregivers and their interaction.
Qualitative interview design.
Six outpatient oncology departments at a University Hospital.
Participants. Thirty-two patients (age range 70–86) and 19 family caregivers (age range 42–83).
Semi-structured interviews with a fairly open framework were conducted and analyzed using the constant comparative method inspired by a grounded theory approach.
Older patients and family caregivers experience important demands when confronted with cancer. Patients feel the inherent need to search for hope, and the majority are able to do so by employing coping strategies. Because of their older age, patients anticipate getting a serious illness such as a cancer diagnosis. Family caregivers become ‘a family member of an older person with cancer’ and feel responsible for the patient's well-being and for providing care. If patients are able to maintain a ‘positive’ story, family caregivers support this ability. If not, they search for a ‘positive’ story and point this out to the patient. Most family caregivers perceive their care-giving as a normal process and find it difficult to request professional help for themselves. Nevertheless, knowing that professional help is available whenever they need it reassures them. Overall, life continues during the illness experience: the interaction between patients and family caregivers goes on, their relationship proceeds, the coping and care patterns continue.
The cancer diagnosis has a major impact on patients and family caregivers. This study offers a framework for understanding what is it like to have cancer in old age and outlines the importance of listening actively to the life stories of patients and family caregivers in order to comprehend coping strategies. This may result in better tailored patient-family centered care.
International Journal of Nursing Studies 07/2014; 52(1). DOI:10.1016/j.ijnurstu.2014.07.012 · 2.25 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To explore the debate on the development of the nurse practitioner profession in the Netherlands.
In the Netherlands, the positives and negatives of nurse practitioners working in the medical domain have been debated since the role was introduced in 1997. The outcome of the debate is crucial for nurse practitioners' professional development and society's justification of their tasks.
Review of 14 policy documents, 35 opinion papers from nurses, 363 opinion articles from physicians and 24 Dutch research papers concerning nurse practitioners from 1995 to 2012.
Two discourses were revealed: one related to efficiency and one to the development of the profession. In both, the nurse practitioner role was presented as a solution for healthcare and workforce problems, while arguments differed. The efficiency discourse seemed most influential. Opinions of nurse practitioners were underrepresented; taking up new responsibilities was driven by the wish to improve patient care. While most physicians were willing to delegate tasks to nurse practitioners, they wished to retain final responsibility for medical care.
All available publications were extensively studied, which could not include unpublished policy documents from the government or influential parties. This may have led to some selectivity.
The case of the Netherlands shows that nurses in developing their advanced role are facing barriers, similar to those in other countries. The dominance of efficiency arguments combined with protection of medical autonomy undermines the development towards nursing care that really benefits patients.
Nurse practitioners should strive to obtain positions in which they are allowed to make their own decisions and wise use of healthcare resources for the good of patients and society. Nurse practitioners should aim to become members of influential healthcare Boards in their countries, in which they can raise their voices and be involved in policy making.
International Nursing Review 12/2013; 61(1). DOI:10.1111/inr.12071 · 0.74 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process.
To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process.
This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory.
Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns.
This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.
Journal of pain and symptom management 09/2013; DOI:10.1016/j.jpainsymman.2013.06.007 · 2.74 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: CONTEXT: Symptom control is an essential part of palliative care and important to achieve optimal quality of life. Studies showed that patients with all types of advanced cancer suffer from diverse and often severe symptoms. Research focusing on older persons is scarce because this group is often excluded from studies. Consequently, it is unclear which symptoms older palliative care patients with cancer experience and what is the prevalence of these symptoms. To date, no systematic review has been performed on the prevalence of symptoms in older cancer patients receiving palliative care. OBJECTIVES: The objective of this systematic review was to search and synthesize the prevalence figures of symptoms in older palliative care patients with cancer. METHODS: A systematic search through multiple databases and other sources was conducted from 2002 until April 2012. The methodological quality was evaluated. All steps were performed by two independent reviewers. A meta-analysis was performed to pool the prevalence of symptoms. RESULTS: Seventeen studies were included in this systematic review. Thirty-two symptoms were identified. The prevalence of these symptoms ranged from 3.5% to 77.8%. The most prevalent symptoms were fatigue, excretory symptoms, urinary incontinence, asthenia, pain, constipation, and anxiety and occurred in at least 50% of patients. CONCLUSION: There is a high degree of uncertainty about the reported symptom prevalence because of small sample sizes, high heterogeneity among studies, and the extent of instrument validation. Research based on rigorous methods is needed to allow more conclusive results.
Journal of pain and symptom management 06/2013; DOI:10.1016/j.jpainsymman.2013.02.016 · 2.74 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Focusing on loss or maintenance of identity in persons with dementia may affect how they are approached and cared for. We performed a longitudinal study of 17 elderly persons with early-stage dementia with the aim of exploring changes in the experience of living with dementia. The major theme – a struggle to be valued – was clearly present in follow-up interviews. However, we observed a gradual shift in the concept of being valued: a shift from ‘being valued for what you do’ toward ‘being valued for who you are’. This progression represents a shift from performance-related core values of identity to those that are existentially related. These findings suggest that the self can be maintained by adjusting to loss.
Ageing and Society 02/2013; 33(02):1 - 27. DOI:10.1017/S0144686X11001115 · 1.23 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: AIMS AND OBJECTIVES: The Forensic Early Warning Signs of Aggression Inventory (FESAI) was developed to assist nurses and patients in identifying early warning signs and constructing individual early detection plans (EDP) for the prevention of aggressive incidents. The aims of this research were as follows: First, to study the prevalence of early warning signs of aggression, measured with the FESAI, in a sample of forensic patients, and second, to explore whether there are any types of warning signs typical of diagnostic subgroups or offender subgroups. BACKGROUND: Reconstructing patients' changes in behaviour prior to aggressive incidents may contribute to identify early warning signs specific to the individual patient. The EDP comprises an early intervention strategy suggested by the patient and approved by the nurses. Implementation of EDP may enhance efficient risk assessment and management. DESIGN: An explorative design was used to review existing records and to monitor frequencies of early warning signs. METHODS: Early detection plans of 171 patients from two forensic hospital wards were examined. Frequency distributions were estimated by recording the early warning signs on the FESAI. Rank order correlation analyses were conducted to compare diagnostic subgroups and offender subgroups concerning types and frequencies of warning signs. RESULTS: The FESAI categories with the highest frequency rank were the following: (1) anger, (2) social withdrawal, (3) superficial contact and (4) non-aggressive antisocial behaviour. There were no significant differences between subgroups of patients concerning the ranks of the four categories of early warning signs. CONCLUSION: The results suggest that the FESAI covers very well the wide variety of occurred warning signs reported in the EDPs. No group profiles of warning signs were found to be specific to diagnosis or offence type. RELEVANCE TO CLINICAL PRACTICE: Applying the FESAI to develop individual EDPs appears to be a promising approach to enhance risk assessment and management.
[Show abstract][Hide abstract] ABSTRACT: The transition from RN to nurse practitioner presents challenges. Because nurse practitioners require deeper critical decision-making abilities to provide safe and quality health care, the Master in Advanced Nursing Practice curriculum implemented reflective case studies to facilitate active and reflective learning. To identify the learning opportunities, we performed a qualitative interpretative study of 77 reflective case studies written by students enrolled in the program. Analysis revealed two categories of learning opportunities-(a) Direct Care, with subcategories of focusing on patients' needs, exploring one's own values, and providing comprehensive care; and (b) Increased Performance Demands, with subcategories of handling independence and dependence, and dealing with emotions. The reflective case study is a powerful educational tool to create and guide a new professional with increased responsibilities for a comprehensive and compassionate response to patients' needs.
[Show abstract][Hide abstract] ABSTRACT: The purpose of this study was to examine the reliability and validity of the Dutch itching cognitions questionnaire (ICQ). This by origin German questionnaire, the Juckreiz Kognitons Fragebogen consists of two subscales: catastrophizing and helpless coping and problem-focused coping, and measures itch-related coping. The results were compared with the German and Japanese validation studies. The Dutch ICQ was completed by 171 patients with chronic pruritic skin diseases. Reliability was evaluated by determining internal consistency, mean inter-item correlation, and item-total correlation. Cronbach's alpha was .90 (catastrophizing and helpless coping) and .81 (problem-focused coping). The mean inter-item correlations for the subscales were .48 (catastrophizing and helpless coping) and .30 (problem-focused coping). The item-total correlations range from .57 to .76 (catastrophizing and helpless coping) and from .32 to .57 (problem-focused coping). Confirmatory factor analysis indicated a good fit of the model and support construct validity. Concurrent validity was determined by examining correlations of the ICQ with intensity of itching and scratching, depression, and anxiety. The correlations of the subscale catastrophizing and helpless coping with intensity of itching and intensity of scratching are .28 (p < .01) and .32 (p < .01), respectively. The correlation between the subscale problem-focused coping and intensity of itching is .23 (p < .01). No significant correlation exists between problem-focused coping and intensity of scratching. Correlations between both subscales and anxiety and depression vary from .33 to .58 (p < .01). It was concluded that the Dutch version of the ICQ is a reliable and valid instrument.
Journal of Nursing Measurement 04/2012; 20(1):35-46. DOI:10.1891/1061-3722.214.171.124
[Show abstract][Hide abstract] ABSTRACT: The concept of a working alliance is rooted in psychotherapy and has been studied extensively in that field. Much less research has been conducted into working alliances between chronic psychiatric patients and their case managers. The aim of this review was to identify what is known about the working alliance between chronic psychiatric patients and their case managers. An extensive survey of the literature produced 14 articles for this review. The results of studies conducted show that a good working alliance has positive effects on the functioning of patients, and that the quality of the alliance depends on both patient characteristics and the behaviour of the case managers. The results also indicate that the working alliance is largely determined in the first 3 months of the contact. Further research into the development of working alliances is necessary.
Journal of Psychiatric and Mental Health Nursing 10/2011; 19(1):1-7. DOI:10.1111/j.1365-2850.2011.01741.x · 0.98 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: OBJECTIVE: Advance Care Planning (ACP) - the communication process by which patients establish goals and preferences for future care - is encouraged to improve the quality of end-of-life care. Gaining insight into the views of elderly on ACP was the aim of this study, as most studies concern younger patients. METHODS: We conducted and analysed 38 semi-structured interviews in elderly patients with limited prognosis. RESULTS: The majority of participants were willing to talk about dying. In some elderly, however, non-acceptance of their nearing death made ACP conversations impossible. Most of the participants wanted to plan those issues of end-of-life care related to personal experiences and fears. They were less interested in planning other end-of-life situations being outside of their power of imagination. Other factors determining if patients proceed to ACP were trust in family and/or physician and the need for control. CONCLUSIONS AND PRACTICE IMPLICATIONS: Before engaging in ACP conversations, physicians should explore if the patient accepts dying as a likely outcome. Also the experiences and fears concerning death and dying, trust and the need for control should be assessed. If not, there is a risk of pseudo-participation. This may result in end-of-life decisions not reflecting the patient's true wishes.
[Show abstract][Hide abstract] ABSTRACT: To elucidate parents' experiences when caring at home for their child with incurable cancer and to show how parents give meaning to their experiences throughout the end-of-life (EOL) phase.
Interpretative qualitative study.
Five academic pediatric oncology centers.
42 parents of 22 children with incurable cancer, cared for at home.
An inductive thematic analysis of single and repeated open interviews using phenomenological techniques.
Four EOL stages were identified: becoming aware of the inevitable death, making the child's life enjoyable, managing the change for the worse, and being with the dying child. The essence of parenting during those stages was captured by the notion of being meaningful to the child and preserving the parent-child relationship. Parents were able to cope better with the EOL phase and to sustain their parenting role because of their ability to postpone grief, enjoy their child's expressions of happiness, see the child's identity despite physical impairment, and enjoy the rewards they experienced from being there for their child.
Parenting while losing a child brings parents to the point of an existential crisis. The child's deterioration forces parents to redefine their traditional parenting role. Although the way parents give meaning to their caregiving experience helps them cope, it can decrease their ability to acknowledge the child's needs.
Nurses can help parents to face the reality of their child's situation and redefine their role accordingly, such as by providing information and alternative perceptions that fit the child's changed needs while preserving the parent-child relationship. Attention to signals indicating stress disorders is needed.
Oncology Nursing Forum 07/2011; 38(4):E260-71. DOI:10.1188/11.ONF.E260-E271 · 1.91 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: "Early warning signs of aggression" refers to recurring changes in behaviors, thoughts, perceptions, and feelings of the patient that are considered to be precursors of aggressive behavior. The early recognition of these signs offers possibilities for early intervention and prevention of aggressive behaviors in forensic patients. The Forensic Early warning Signs of Aggression Inventory (FESAI) was developed to assist nurses and patients in identifying and monitoring these early warning signs of aggression.
The FESAI was developed by means of qualitative and quantitative strategies. One hundred seventy six early detection plans were studied to construct a list of early warning signs of aggression. Inventory drafting was done by merging and categorizing early warning signs. Forensic nursing professionals assessed face validity, and interrater agreement was tested.
The investigation of early detection plans resulted in the FESAI, which contains 44 early warning signs of aggression subdivided into 15 main categories. The face validity of the form was very good, and the interrater agreement was satisfactory.
Preliminary findings indicate that the FESAI provides a useful listing of early warning signs of aggression in forensic patients. It may facilitate the construction of early detection plans for the prevention of aggressive behaviors in forensic psychiatry.