Dying with motor neurone disease,what can we learn from family caregivers?

Background Increasingly, people with neurodegenerative illness are cared for at home until close to death. Yet, discussing the reality of dying remains a social taboo. Objective To examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end‐of‐life care. Design Secondary analysis was undertaken on data sets generated from two longitudinal qualitative studies employing similar data collection and analysis methods. Combining data sets increased participant numbers in a low incidence disease group. Setting and participants Primary studies were undertaken with family caregivers in England and Australia. Interview and observational data were collected mostly in home. Participants who discussed dying and death formed the sample for secondary analysis. Results Combined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND. Despite short survival predictions, discussions among family members about dying were often sporadic and linked to loss of hope. Effective planning for death assisted caregivers to manage the final degenerative processes of dying. When plans were not effectively communicated or enacted, capacity to preserve personhood was reduced. Discussion and Conclusion Returning death and dying to social discourse will raise the level of community awareness and normalize conversations about end‐of‐life care. Strategies for on‐going, effective communication that facilitates advance care planning among patients, their families and practitioners are essential to improve dying and death for people with MND and their family caregivers.     

An integrative review on family caregivers’ involvement in care of home‐dwelling elderly

Often family members provide care‐giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care‐giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long‐term care facilities that family members prefer to be involved in decision‐making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs’ involvement in home‐care settings from the FCs’ perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs’ caring for home‐dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty‐six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included “relationship building with professionals,” “negotiating with professional care,” “being professionally supported,” and “managing role expectations and knowledge sharing”. The fifth theme, “working together” described the mutual care for the care recipient. Although the first four themes were consistent with a pre‐existing conceptual model by Sims‐Gould and Marin‐Matthews (2010), the fifth required an expansion of the model with an additional contribution “collaborative practice”. The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.     

The meaning of futility through conversation

Decisions about futility were described as a joint conversation that includes patients, caregivers, and the community at large. Guidelines developed by consortiums such as GUIDe were viewed as contributing positively to the conversation by involving the public voice--a public voice that should be included in conversations at the bedside. Concern that guidelines may insidiously become institutional policies or viewed as blanket rules for decisions was expressed. Several participants cautioned that GUIDe will have a positive influence as long as guidelines and/or standards of practice remain as only a part of the conversation and do not become the conversation. Further, limitations of statistics in individual cases must be recognized. Data from outcomes research was considered as only a component of the conversation because the primary focus of conversation should be on real people in real situations, not extrapolated data. As stated by one of the participants, the most important focus of GUIDe or other similar consortia, may be "on how you hold conversations with people." An interest was expressed in facilitating conversations that enhance both patients' and healthcare providers' particularity, freedom, and awareness and expression of their values and best interests. Such conversations demonstrate respect for each other's positions rather than a wish that the other's world view would just go away.     

Coping with patients suffering from overactive bladder: experiences of family caregivers in Hong Kong

This article examines the experiences of family caregivers working with patients affected by overactive bladder (OAB) in Hong Kong. Chronic diseases create physical and emotional burdens not only for patients but also for family caregivers, who often experience physical and emotional burnout and social impairment. Extensive literature has pertained to caregiver experiences in western and non‐western settings; however, few studies have addressed the livelihoods and experiences of family caregivers of patients with OAB in ethnic Chinese communities. Because of the increasing prevalence of OAB worldwide, this study investigated the experiences of such caregivers in Hong Kong, examining their emotional and social needs. A qualitative research design with individual semistructured interviews was adopted, and snowball sampling was used to recruit 35 family caregivers who were referred by patients with OAB. The participants were interviewed individually from May to August 2013. A phenomenological approach was adopted in the data analysis. The data revealed that all participants had unpleasant experiences in caring for family members with OAB. A sense of powerlessness, helplessness, confusion and guilt, as well as grievances and social withdrawal, was prevalent, causing great physical and emotional suffering and subsequent physical and emotional burnout. These negative experiences were often caused by confusion regarding caretaking duties. The negative emotions of the participants and their family members also caused a lack of communication and mutual understanding about the disease, causing care‐giving to be even more confusing and difficult. Furthermore, because of traditional Chinese cultural values and gender expectations, male participants experienced the triple burden of employment, domestic duties and care‐giving. More holistic social and healthcare support services should be provided for care‐giving family members of patients with OAB patients, empowering such caregivers to attend to family members and care for their own emotional well‐being.     

The centrality of the family as a resource for homecare: gender and generational perspectives

Given the critical situation of informal caregiving in Spain, we explore how in the current socio-economic and political context main caregivers value and understand their family members as a resource to support caregiving. This qualitative study had a postfeminist orientation and was developed in Mallorca (Spain) through individual interviews and focus groups with men and women home caregivers from three generations. The participants identified their families, understood as women, as their main source of help due to the emotional quality of care they provide. However, internal conflicts and gender inequities, among others, made us question the dominant discourse of family's privileged position to take care of dependent people. The implications of these results to public policy are discussed.     

Experiences of family caregivers regarding a community-based care- and case-management intervention. A qualitative study

Family caregivers play an essential role in healthcare for elderly people in primary care settings. The complexity of geriatric patients as well as the fragmentation of healthcare systems can lead to a burden for family caregivers, which can affect their physical and psychological health as well as social relationships, economic productivity and quality of caregiving. Care- and case-management offers a possibility to support, empower and navigate family caregivers through healthcare systems in order to reduce their own burden. The project RubiN (Continuous care in a regional network) was developed to provide regional care- and case-management for outpatient care of the elderly (age >70 years) in a primary care setting in Germany. The aim of this qualitative study was to explore experiences and attitudes of family caregivers of geriatric patients regarding the community-based care- and case-management intervention RubiN. Telephone interviews with a purposeful sample of 21 family caregivers enlisted in all RubiN networks were conducted between March and May 2020 and were followed by qualitative content analysis. The main categories, which emerged were namely: (1) current healthcare situation and (2) experiences with RubiN. Main findings suggest that participants in this study valued the provided support and experienced a sense of relief. However, some participants were disappointed with RubiN and the included support by care- and case-managers. A care- and case-management affected caregiving per se as well as the patient's and family caregiver's well-being. Important aspects contributing to these findings were a continuous relationship, training and expertise of the care- and case-managers. Establishing networks between the patients, family caregivers, care- and case-managers and healthcare providers were key components as well as a good explanation about RubiN itself for family caregivers. Therefore, a community-based care- and case-management can play an important role in detecting, facilitating and preventing family caregiver burden.     

Family members' narrated experiences of communicating via video-phone with patients with dementia staying at a nursing home

We studied the experience of family members who communicated via video-phones with elderly demented patients who were either staying at a home for temporary respite care or living in a nursing home. The study was based on qualitative data from seven interviews. The interviewees each had three or more months' experience with a video-phone. The open interviews were transcribed. Content analysis showed that video-phone conversations made the relatives of patients at nursing homes more involved in the caring process and that conversation via the video-phone was a different way of communicating. Video-phone conversations with demented patients were in some cases more focused and of better quality than face-to-face conversations. In most cases the video-phone conversations required the assistance of staff at the home in order to be meaningful. Video-phones have the potential to become useful tools for family members caring for elderly relatives.     

Hospice Family Members' Perceptions of and Experiences With End-of-Life Care in the Nursing Home

Objective

Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting?

Methods

This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.

Results

Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.

Conclusion

These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.     

Healthcare professionals’ accounts of challenges in managing motor neurone disease in primary healthcare: a qualitative study

Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis and respiratory failure, with a life expectancy of 2–4 years. In order to better understand how MND is managed in the community, we conducted a qualitative study to explore the challenges healthcare professionals encounter when managing MND in primary healthcare. Based on data from 15 semi‐structured interviews with primary healthcare professionals in Norway, we found that MND is viewed as a condition that requires exceptional effort and detailed planning. Healthcare professionals reported five main challenges in managing MND in primary healthcare: (i) building relationships with those giving and receiving care in the home; (ii) preventing caregiver burnout and breakdown; (iii) providing tailored care; (iv) ensuring good working conditions in patients’ homes; and (v) recruiting and retaining qualified nursing assistants. Healthcare professionals reported needing working conditions that allow them to tailor their approach to the personal, emotional and existential nature of care preferences of those living with MND. However, people with MND and their families were sometimes perceived by healthcare professionals to prefer a strictly task‐focused relationship with care providers. Such relationships limited the healthcare professionals’ control over the MND trajectory and their capacity to prevent family caregiver burnout and breakdown. Adequate resources, along with training and support of nursing assistants, may increase the continuity of nursing assistants. Responsiveness to patient and family needs may enhance collaboration and promote tailored primary care and support for patients with MND and their families.     

Home care nursing for persons with dementia from a family caregivers' point of view: Predictors of utilisation in a rural setting in Austria

The service utilisation of persons with dementia (PwD) and their caregivers is subject to lively debate. The reasons for non-utilisation are manifold and heterogeneous. Conceptual models and explanatory frameworks may help identify predictors of the usage of health services. Literature examining the utilisation of home care services for PwD is scarce. This study explored predictors of home care nursing utilisation of PwD and their informal caregivers in a rural setting, according to the Andersen Behavioural Model of Health Care Use. A mixed-methods study was conducted in a rural area of Austria. In using non-random multistage sampling, anonymous questionnaires were distributed to collect data on family caregivers of PwD. Data were analysed using sequential binary logistic regression to characterise home care service users. To reflect the complexity of the Andersen model, a regression tree model was used. In total, 107 family caregivers completed the survey. Predisposing factors for home care nursing utilisation were higher age of the caregiver, female gender of PwD and kinship of the PwD and caregiver. Disruptive behaviour and independence in activities of daily living of PwD were associated with need factors for service use. According to the Andersen model, the predisposing and need factors contributed most to the explanation of home care nursing utilisation. The enabling factors employment, education and income tend to predict service use. Our findings indicate that higher age of the family caregiver and female gender of PwD are the main predictors for utilisation of home care nursing in a rural setting. To improve utilisation, the advantages of professional care services should be promoted, and the awareness about the variety of services available should be increased. To ensure a better understanding of the barriers to accessing home care, PwD should more often be included in healthcare service research.     

Partnership working by default: district nurses and care home staff providing care for older people

Older people residents in care homes that only offer residential care rely on primary healthcare services for medical and nursing needs. Research has investigated the demands that care homes staff and residents make on general practice, but not the involvement of other members of the primary healthcare team. This paper describes two consecutive studies completed in 2001 and 2003 that involved focus groups and survey methods of enquiry conducted in two settings: an England shire and inner London. The research questions that both studies had in common were (1) What is the contribution of district nursing and other primary care services to care homes that do not have on‐site nursing provision? (2) What strategies promote participation and collaboration between residents, care home staff and NHS primary care nursing staff? and (3) What are the current obstacles and aids to effective partnership working and learning? A total of 74 community‐based nurses and care home managers and staff took part in 10 focus groups, while 124 care home managers (73% of the171 surveyed) and 113 district nurse team leaders (80% of the 142 surveyed) participated in the surveys. Findings from both studies demonstrated that nurses were the most frequent NHS professional visiting care homes. Although care home managers and district nurses believed that they had a good working relationship, they had differing expectations of what the nursing contribution should be and how personal and nursing care were defined. This influenced the range of services that older people had access to and the amount of training and support care home staff received from district nurses and the extent to which they were able to develop collaborative and reciprocal patterns of working. Findings indicate that there is a need for community‐based nursing services to adopt a more strategic approach that ensures older people in care homes can access the services they are entitled to and receive equivalent health care to older people who live in their own homes.     

Voices of care for adults with disabilities and/or mental health issues in Western Canada: what do families and agencies need from each other?

Our purpose in this paper is to report on the frustrations and unmet needs of paid, formal caregivers and unpaid, family caregivers who together provide care to adults with disabilities and/or mental health issues. We conducted eight focus group interviews between November 2010 and June 2011 in two large, urban centres and one smaller centre in Western Canada. Four of our focus groups were with family members including adults with disabilities and/or mental health issues, their parents and their siblings, and four were with representatives from agencies providing support and services to adults with disabilities and/or mental health issues and their families. Data were collected from 23 family members and 24 agency representatives who responded to questions about successes and struggles in meeting, and collaborating to meet, care needs of adults with disabilities and/or mental health issues. Each focus group session was digitally recorded and transcribed; field notes were also taken and we thematically analysed data according to family versus agency perspectives of their successes and barriers in care provision and care collaboration. We found that family members desire greater and more effective support in enriching the lives of adults with disabilities and/or mental health issues and in preparing for age‐related changes. Agency representatives are keenly aware of the needs and challenges faced by families, yet grapple with being effective collaborators with families of widely varying priorities and styles of care and collaboration.     

Challenges and barriers in mental healthcare systems and their impact on the family: A systematic integrative review

The aim of this systematic integrative review is to analyse the challenges and barriers found in mental healthcare systems and the impact they have on the family. Searches were made of the Web of Science, Scopus, Medline and Cochrane databases using terms relating to mental health, family care and healthcare systems. We included and critically evaluated studies published in English between 2015 and 2019 that directly or indirectly analysed public mental health policies and the consequences they have for the family. We analysed our findings following the inductive content analysis approach. A total of 32 articles that met quality indicators were identified. Very closely related structural, cultural, economic and healthcare barriers were found that contribute to the treatment gap in mental health. The family covers the care systems’ deficiencies and weaknesses, and this leads to overload and a diminishing quality of life for caregivers. It is acknowledged that people with mental illness and their families should be able to participate in the development of policies and thus contribute to strengthening mental healthcare systems worldwide.     

Balancing needs as a family caregiver in Huntington's disease: a qualitative interview study

Family members in families with severe chronic disease play important roles in care‐giving. In families affected by Huntington's disease (HD), caregivers encounter practical and emotional challenges and distress. Enduring caregiver burdens may lead to problems and caregivers are in need of social support and health services to deal with challenges. We wanted to explore coping strategies and behaviour patterns used by family caregivers to care for themselves, while caring for a family member with HD. Participants were recruited from hospitals and community‐based healthcare. The sample represents experiences from care‐giving in all stages of the disease. We conducted semi‐structured interviews with 15 family caregivers in Norway. The transcribed material was analysed by use of systematic text condensation, a method for cross‐case thematic analysis of qualitative data. We found that family members used various coping strategies, adjusted to the stage and progression of HD. They tried to regulate information about the disease, balancing considerations for protection and disclosure, within and outside the family. The participants made efforts to maintain a balance between their own needs in everyday life and the need for care for affected family member(s). As the disease progressed, the balance was skewed, and the family caregivers' participation in social activities gradually decreased, resulting in experiences of isolation and frustration. In later stages of the disease, the need for care gradually overshadowed the caregivers' own activities, and they put their own life on hold. Health professionals and social workers should acknowledge that family caregivers balance their needs and considerations in coping with HD. They should, therefore, tailor healthcare services and social support to family caregivers' needs during the different stages of HD to improve caregivers' abilities to maintain some of their own activities, in balance with care‐giving.     

Perceptions of people with mild intellectual disability and their family members about family-based social capital in the Netherlands

Families play an important role in the lives of people with intellectual disability as they do for everyone. However, little research has addressed the views of people with intellectual disability about their families by using self-report. Individual family members may hold different views about their family relationships. Therefore, we used a social capital theoretical perspective to examine (a) how perceptions of people with mild intellectual disability (MID) about their family support networks compare to those of their family members and (b) what factors are associated with any diverging perceptions. Randomly selected participants with MID (n = 111) and their family members (n = 111) were interviewed individually at their homes using the Family Network Method—Intellectual Disability (FNM-ID). The FNM-ID examines how people define their family groups and how they perceive existing supportive relationships within this group. The findings showed that participants with MID perceived that they had somewhat denser family networks (i.e., bonding social capital) than family members perceived them to have and were more likely to report bridging social capital. They reported more relationships that involved them providing support to family members. This difference in estimation was greater when the participant with MID displayed higher levels of externalizing behaviour problems. They also perceived more reciprocity in their relationships with family. No differences were found in the estimated numbers of significant family members and relationships in which support was received. It is concluded that people with MID and their family members have different perceptions on several aspects of the family support network. Family professionals and services should seek the views of people with intellectual disability and their family members when carrying out assessments or organizing supports.     

Nudging influenza vaccination among health care workers

Our online randomized controlled trial on 6230 healthcare workers (HCWs) tests the impact that three nudges – social norms, reminding the impact on beneficiaries, and defaults – have on the intention to vaccinate against seasonal influenza across job families. Willingness to get a flu shot was higher among subjects invited to imagine themselves working at the local health authority (LHA) with the greatest immunization coverage within their region relative to their counterparts prompted to imagine working at the LHA with the lowest coverage. Reminding the impact of flu vaccination on beneficiaries had different effects across job families, with physicians caring more benefits for themselves, nurses about patients’ benefits, and technicians about family and friends. Default responses anchoring toward a high rather than a low vaccination intention increased the willingness to immunize among all HCW except physicians. Targeted nudges can be considered in developing interventions to promote influenza vaccination among HCWs.     

Videophone communication between residents and family: a case study

OBJECTIVES: This case study examines the uses, perceived advantages and disadvantages, and expectations of videophone communication by a nursing home resident and a geographically distant family member. METHODS: Interviews were conducted with these participants, one in person and one by phone. RESULTS: Themes identified suggest that, with the added visual component, there are additional uses and psychosocial benefits of videophone communication when compared to the telephone for both nursing home residents and family members. CONCLUSION: The study suggests that the use of the technology is not only feasible in an institutional setting but also beneficial. Further research with larger groups is supported.