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.     

Personal care expectations: Photovoices of Chinese ageing adults in Hong Kong

The increasing ageing population contributes to growing demands for personal care that fulfils ageing adults’ preferences and expectations. This study explored Chinese ageing adults’ expected forms and sources of future personal care and the factors influencing care expectations. A qualitative photovoice research method – which integrated photography, interviews and group discussions – was used for data collection between January and April 2016. Through purposive sampling, 36 community‐residing participants aged 51–80 years took photographs that captured personal care preferences or expectations within individual, familial and societal contexts. Participants described feelings of worry, uncertainty and unpreparedness for future care needs and arrangements. They preferred practicing self‐care for as long as possible and remaining in their homes and communities (“ageing in place”) through support from assistive technologies, family members or home‐based and community services. Institutional care was regarded as the last resort. The findings reflected discrepancies between ageing adults’ care preferences and realities and their ambivalent attitudes towards filial care when switching between roles. Confronted with the increasingly unreliable family care, financial resources and insufficient community services, participants anticipated receiving institutional care that would be less satisfying or that they would dislike. As caregivers, ageing adults displayed strong commitment to filial obligations, whereas when perceiving themselves as care receivers they felt that they could not expect care from their children because of practical considerations. By understanding preferred care forms and sources, actors can devote resources, policies and interventions to support self‐care through proactive planning and technological advancement, foster “ageing in place” through family and community care, and improve institutional care to enable ageing with dignity.     

“I'm Satisfied … But”: Clients' and Families' Contingent Responses About Home Care

Home care service organizations need a means of gaining useful feedback about satisfaction with care from clients and their families. Interviews were conducted with 82 older adult clients and 52 family members about their satisfaction with home care. A subgroup of participants (n = 39) provided “contingent” satisfaction responses. Contingent responses reflect the duality of perceptions that clients and families convey about services. Three themes emerged as critical to understanding these types of responses: adept versus inept staff, predictable versus precarious scheduling, and responsive versus restrictive care plans. Understanding the reasons for contingent responses could help home care agencies to target quality improvement initiatives for individual clients and families.     

Does informal care impact utilisation of home‐based formal care services among end‐of‐life patients? A decade of evidence from Ontario,Canada

Understanding how informal care impacts formal care utilisation for home‐based end‐of‐life patients is an important policy‐ and practice‐relevant question. This paper aims to assess the relationship between informal and formal home care among home‐based end‐of‐life patients and how this relationship has changed over the last decade and over the end‐of‐life trajectory. We focus on informal care provided by family members or friends, and three types of home‐based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home‐based end‐of‐life care programme in Ontario, Canada from 2005 to 2016, we build a two‐part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home‐based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home‐based end‐of‐life patients. Decision‐makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.     

Life in Government Care: The Connection of Youth to Family

The purpose of this paper is to examine the family attachments of youth who have lived in foster care. Though young people are the primary recipients of services in the child welfare system, their voices are seldom heard both in research and their own plans of care. Data was gathered through a questionnaire distributed to youth aged 17–24 years. Youth named siblings more frequently than any other family member with whom they now have contact, and identified their birth family as their primary object of attachment, despite the birth family being identified the least often as those to whom the youth turn when they are sick or who they talk to about their feelings. Youth who lived in many foster homes stated they do not feel part of any family. Many youth stated that they did not feel listened to by their social workers. Support for co-operative relationships between foster parents and birth parents and alternate dispute resolution are discussed as ways of preventing young people from severing their vital family connections. This article documents a research project about how the experiences of youth’ in government care, including both foster care and group home care, affect their sense of belonging and connection to “family”. It reports findings that show that as the number of foster placements increase the “feeling of being part of a family” diminishes among youth. The research participants, twenty youth aged 17–23 years, most often identify siblings as family members with whom they still have contact, and the birth family is considered to be their most salient attachment. Many youth state that they did not feel listened to or understood by their social workers. Recommendations for social policy and child and youth care practice are discussed.     

Exploring Occupation Roles of Hospice Family Caregivers from Māori,Chinese and Tongan Ethnic Backgrounds Living in New Zealand

A major challenge to occupational therapists working in palliative care is determining the best ways to help family caregivers who are caring for family members. The purpose of this study was to explore palliative caregiver occupations among Māori, Chinese and Tongan ethnicities. Six informants participated, one woman and one man from each ethnic group. In each of their homes, informants were asked to discuss what it was like caring for their dying family member. The occupational themes resulting from these interviews were food preparation, spirituality and family gathering. Therapists need to be aware of the differences in how people care for family members within their ethnicity. Implications are that occupational therapists can help families identify activities important to them within the main occupational themes: different types of foods and their preparations, various ways to express spirituality and how families gather together members of their extended family. Further, clinicians need to take on the role of a “not‐knowing” but curious health‐care provider in order to meet the needs of caregivers. The limitation was the small number of participants who all lived in one geographic area. Future studies should include a wider group of ethnicities. Copyright © 2014 John Wiley & Sons, Ltd.     

Can specially trained community care workers effectively support patients and their families in the home setting at the end of life?

Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end‐of‐life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end‐of‐life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self‐reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end‐of‐life care in the home); providing practical assistance (“hands‐on”); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end‐of‐life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state.     

Supporting family engagement with child and adolescent mental health services: A scoping review

A key challenge facing the mental health field is connecting children and families to services when symptoms first appear. Multiple barriers inhibit timely access to treatment, and interventions to resolve barriers to care are not common among health and social care organisations. To address this research‐to‐practice gap this study undertook a scoping review of the empirical literature aimed at identifying key factors in the social ecology of families which influence family engagement with child and adolescent mental health services, then identifying and describing models of intervention designed to help facilitate access to care. Forty studies published between 1 January 2000 and 28 February 2019 were reviewed. Key factors associated with child and adolescent mental health service engagement included family attitudes towards mental illness and help seeking, the flexibility and availability of needed services, community attitudes and stigma surrounding mental illness and mental health treatment, and the degree of coordination and integration across systems of health and social care. Models of intervention to facilitate engagement with mental health services included family outreach, telephone and digital health strategies, and integrated care approaches. Empirical support is strongest for family outreach and integrated care, although telephone and digital health strategies are underexplored with children and families and a potentially promising avenue for future research. To support family engagement with child and adolescent mental health services health and social care organisations should be prepared to identify barriers in their local practice settings and integrate efficacious engagement approaches into their continuum of available services.     

Families' experiences of caring for technology-dependent children: a temporal perspective

In the present study, families' experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple 'technological', 'social' and 'natural' rhythms and routines around which the families' lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding pumps, suction machines, dialysis machines and ventilators. Using mainly qualitative methods, children, parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample, depending on the type and number of devices used, the individual child's needs, and who provided technical care during the day and/or at night at home and in other settings. While the children's health and quality of life benefited from the technology, the time demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families, limiting their participation in school, employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion, the authors argue that the care of technology-dependent children at home places considerable time demands on families. Families have little or no access to suitably trained carers who can provide technical care required in the home or away from the home to give parents and the whole family a break from caring where required. More trained carers and short-term care provision, better coordination of services and improvements in the design of devices would all help to reduce the negative effects of the care routines on families.     

Temporal trends in place of death for end‐of‐life patients: Evidence from Toronto,Canada

Understanding the temporal trends in the place of death among patients in receipt of home‐based palliative care can help direct health policies and planning of health resources. This paper aims to assess the temporal trends in place of death and its determinants over the past decade for patients receiving home‐based palliative care. This paper also examines the impact of early referral to home‐based palliative care services on patient's place of death. Survey data collected in a home‐based end‐of‐life care program in Toronto, Canada from 2005 to 2015 were analysed using a multivariate logistic model. The results suggest that the place of death for patients in receipt of home‐based palliative care has changed over time, with more patients dying at home over 2006–2015 when compared to 2005. Also, early referral to home‐based palliative care services may not increase a patient's likelihood of home death. Understanding the temporal shifts of place of death and the associated factors is essential for effective improvements in home‐based palliative care programs and the development of end‐of‐life care policies.     

THE FAMILY AND NEONATAL INTENSIVE CARE

The birth of a sick newborn provides great stress for the family. During the illness, the family must face charged issues, including the loss of the perfect child they had anticipated and a fear that their baby may die. Issues related to helping these vulnerable families are examined, including response to the birth of a sick baby, communication with the family, preparation for discharge and long term hospitalization, as well as issues pertaining to the staff of the neonatal intensive care unit.     

Questioning “choice”: A multinational metasynthesis of research on directly funded home‐care programs for older people

In many developed contexts, home‐care services have been overhauled with the intent of increasing control and flexibility for those using social and health services. This change is associated with providing funds directly to individuals, and sometimes their families and supports, to arrange at home‐care assistance with the activities of daily living. Directly funded home‐care programs, or “direct funding” (DF), are not value‐neutral policy interventions, but complex and politicised tools for the enactment of care in contemporary times. In this qualitative metasynthesis, we consider 47 research articles published between 2009 and 2017 that explore various DF programs for older persons in the United Kingdom, Australia, and the United States to identify core concepts in the literature. We find that choice emerges as a central concern. We then assess the literature to explore the questions: How does the existing literature conceptualise choice, and the mechanisms through which choice is enhanced, in DF programs for older persons? How is choice, and the benefit of choice to older service users, understood in relevant studies? We argue that the concept of “choice” manifests as a normative goal with presumed benefits among the studies reviewed. Particularly when discussing DF for older people, however, it is essential to consider which mechanisms improve care outcomes, rather than focusing on which mechanisms increase choice writ large. In the case of DF, increased choice comes with increased legal responsibilities and often administrative tasks that many older people and their supports find burdensome. Furthermore, there is no evidence that choice over all elements of one's services is the mechanism that improves care experiences. We conclude by presenting alternative models of understanding care emerging from feminist and other critical scholarship to consider if we are, perhaps, asking the wrong questions about why DF is so often preferred over conventional home‐care delivery.     

居家晚期患者临终关怀护理的探讨

目的探讨基层社区卫生服务中心在社区家庭病床对居家晚期患者开展临终关怀服务的可行性及方法。方法回顾性分析61例居家晚期患者的临终护理情况并进行讨论。结果居家晚期患者安详死去者占93%。患者家属满意率为98%。结论本着"以人为本"的原则,对居家晚期患者开展临终关怀护理服务,采用患者亲属参与、医护共同协商治疗护理方案,实施全方位的整体照护具有重大的社会意义。     

Consumer expectations and experiences of quality in Australian home‐based community services

Australians want to live at home as they age and seek support from health and social care services to achieve this. The consumer driven market‐based approach to community services in Australia has resulted in an increases in user's expectations of quality. What constitutes a quality service from the consumer's perspective is an important agenda to understand as the focus of care delivery moves to the domiciliary setting. This paper presents one aspect from a grounded theory PhD study, the aim of which was to understand the lived experience of receiving services in the home and its impact on the meaning of home. Participants were 11 people with dementia and 18 family supporters living in the state of Victoria, Australia. Data were collected between 2015 and 2017 through multiple interviews, photographic images, field notes and memos. NVIVO 10 qualitative analysis software program was used to support constant comparative analysis. Using a grounded theory approach, this study found that the decision to engage with community services was driven by the need to maintain autonomy, self‐identity and home life. Participants sought quality services but discovered a dichotomy of positive and negative aspects in the way services were delivered. The most common reaction to the experience of poor‐quality care was to reflect on their expectations for care quality; and manage the reality of what was delivered. Team work and service responsiveness were positive characteristics but were offset by service limitations and inefficiencies caused by poor communication and poor staff retention. The interpersonal relationships that participants developed with staff was highlighted; trust was an important factor whereas unreliable, task orientated and poorly trained staff would be rejected. The implications for policy and practice are described.     

Evaluation of the processes of family‐centred care for young children with intellectual disability in Western Australia

Introduction Government early intervention services for children with intellectual disability (ID) in Western Australia have adopted the model of family‐centred care. The aim of this study was to evaluate how well it was being practised, to describe the pattern of service utilization and to identify factors influencing parental perceptions of family‐centred care. Methods The study included children aged 0–6 years with ID, who were registered clients of Disability Services Commission, Western Australia. Parents completed a postal survey questionnaire about the frequency and type of services received and their perceptions of services using the Measure of Processes of Care (MPOC‐56) questionnaire. Mean scores for the five MPOC domains were compared using anova against the independent variables of child age group, child diagnostic group, service type and frequency, place of residence, family and demographic variables. Significant variables in each domain were then entered into multivariate analyses. Results Of 292 eligible families, 165 (59%) returned a completed questionnaire. While over 50% of children had contact with occupational, speech and physical therapists at least once per month, less than 20% of children had at least annual contact with either psychology or dental services. Families rated their satisfaction highest for ‘respectful and supportive care’ and lowest for ‘providing general information’. Individual item analyses indicated less satisfaction with ‘co‐ordinated and comprehensive care’. Higher means were associated with more frequent contact with occupational therapy. Conclusion Overall respondents reported early intervention services for young children with ID in Western Australia provided satisfactory family‐centred care by means of the 56‐item MPOC. The frequency of contact with allied health professionals was positively associated with parental ratings of family‐centred care. The study indicates under‐servicing in dental care and psychology services.     

What are the priorities for developing culturally appropriate palliative and end‐of‐life care for older people? The views of healthcare staff working in New Zealand

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end‐of‐life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide ‘hands‐on’ care. The role of family in decision‐making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in ‘hands‐on’ palliative care and decision‐making requires care staff to relinquish their role as ‘expert provider’. Counter to the prioritisation of autonomy in Western health‐care, collective decision‐making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end‐of‐life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.     

The unique experience of home for parents and carers of children with disabilities

The aim of this paper was to investigate the experience of home for parents and carers of children with disabilities in Australia. Data for this qualitative study were gathered using semi-structured interviews with four families living in their own homes. An inductive thematic analysis revealed two main themes. The first was titled ‘Aspects making everyday life easier’ explored the aspects of the home environment that facilitated home life for the child, including access to transport, services, family and home modifications. The second theme ‘Decisions and efforts to create opportunities for the child’ emphasized the efforts made by parents and carers to promote their child’s independence and participation including a strong consideration for their children’s future needs. The study indicated that the location of home, appropriate home modifications and planning for the future defined the experience of home for parents and carers. These findings identify some important considerations for occupational therapists when providing services in the homes of families with children who have a disability.