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.     

Which Components of Medical Homes Reduce the Time Burden on Families of Children with Special Health Care Needs?

ObjectivesTo examine which components of medical homes affect time families spend arranging/coordinating health care for their children with special health care needs (CSHCNs) and providing health care at home.ConclusionsThree of the five medical home components were associated with lower family time burdens arranging/coordinating and providing health care for children with chronic conditions. If the 55 percent of CSHCNs lacking medical homes had one, the share of families with time burdens arranging care could be reduced by 13 percent.     

Societal costs of home and hospital end‐of‐life care for palliative care patients in Ontario,Canada

In Canada, health system restructuring has led to a greater focus on home‐based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end‐of‐life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end‐of‐life care associated with two places of death (hospital and home) using a prospective cohort design in a home‐based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out‐of‐pocket, informal care‐giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care‐giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end‐of‐life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end‐of‐life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end‐of‐life care, resulted in changes in the distribution of costs borne by different stakeholders.     

The impact of a complex care clinic in a children's hospital

Background The number of medically complex and fragile children (MCFC) cared for in children's hospitals is growing, necessitating the need for optimal care co‐ordination. The purpose of this study was to describe the impact of a nurse practitioner/paediatrician‐run complex care clinic in a tertiary care hospital on healthcare utilization, parental and primary care provider (PCP) perceptions of care and parental quality of life. Methods MCFC and their parents were recruited for ambulatory follow‐up by the hospital team to complement care provided by the PCP in this mixed methods single centre pre‐ or post‐evaluative study. Parents participated in semi‐structured interviews within 48 h of discharge; further data were collected at 6 and 12 months. Healthcare utilization was compared with equal time periods pre‐enrolment. Parental health was assessed with the SF‐36; parental perceptions of care were assessed using the Larsen's Client Satisfaction Questionnaire and the Measure of Processes of Care; PCPs completed a questionnaire at 12 months. Parental and PCP comments were elicited. Comparisons were made with baseline data. Results Twenty‐six children and their parental caregivers attended the complex care clinic. The number of days that children were admitted to hospital decreased from a median of 43 to 15 days, and outpatient visits increased from 2 to 8. Mean standardized scores on the SF‐36 increased (improved) for three domains related to mental health. A total of 24 PCPs responded to the questionnaire (92% response); most found the clinic helpful for MCFC and their families. Parents reported improvements in continuity of care, family‐centredness of care, comprehensiveness and thoroughness of care, but still experienced frustrations with access to services and miscommunication with the team. Conclusion A collaborative medical home focused on integrating community‐ and hospital‐based services for MCFC is a promising service delivery model for future controlled evaluative studies.     

Taking the call-bell home: a qualitative evaluation of Tele-HomeCare for children

Tele-HomeCare (THC) delivers health care at home using telephone technologies. A THC service was developed as an adjunct to existing hospital and community care systems. It connected healthcare providers to children and families at home, during the initial transition from hospital to home, using video-conferencing phones and remote vital signs monitors. The goal was to support the transition from hospital to home, for children with subacute healthcare needs. This paper reports the qualitative evaluation of THC and describes the experiences of families supported by THC. A total of 16 mothers, four fathers and two adolescents from 16 families participated in a series of interviews conducted before, during and after THC. The interviews focused on the impact of THC on the children, on the families, and on their overall healthcare experience. Analysis of their accounts identified three subthemes: the stable child, a sense of security, and the healthcare-proficient parent. These subthemes were consistent across all time points and participants. Together they contributed to the overall effect of THC: the timely reunification of the family at home. THC was consistently reported to be an important resource that supported children and families during the transition from hospital to home. The benefits to children and families observed in this study may have also been a consequence of returning to their home environment, since THC allowed these children to be discharged home at a much earlier period. However, our findings are consistent with previous reports of the benefits of THC. Thus, THC is a successful method of healthcare service delivery that enables a safe return home with professional support provided remotely.     

Systematic review of organisation‐wide,trauma‐informed care models in out‐of‐home care (OoHC) settings

Trauma in early childhood has been shown to adversely affect children's social, emotional, and physical development. Children living in out‐of‐home care (OoHC) have better outcomes when care providers are present for children, physically, psychologically, and emotionally. Unfortunately, the high turnover of out‐of‐home carers, due to vicarious trauma (frequently resulting in burnout and exhaustion) can result in a child's trauma being re‐enacted during their placement in OoHC. Organisation‐wide therapeutic care models (encompassing the whole organisation, from the CEO to all workers including administration staff) that are trauma‐informed have been developed to respond to the complex issues of abuse and neglect experienced by children who have been placed in OoHC. These models incorporate a range of therapeutic techniques, and provide an overarching approach and common language that is employed across all levels of the organisation. The aim of this study was to investigate the current empirical evidence for organisation‐wide, trauma‐informed therapeutic care models in OoHC. A systematic review searching leading databases was conducted for evidence of organisation‐wide, trauma‐informed, out‐of‐home care studies, between 2002 and 2017. Seven articles were identified covering three organisational models. Three of the articles assessed the Attachment Regulation and Competency framework (ARC), one study assessed the Children and Residential Experiences programme (CARE), and three studies assessed The Sanctuary Model. Risk of bias was high in six of the seven studies. Only limited information was provided on the effectiveness of the models identified through this systematic review, although the evidence did suggest that trauma‐informed care models may have significantly positive outcomes for children in OoHC. Future research should focus on evaluating components of trauma‐informed care models and assessing the efficacy of the various organisational care models currently available.     

Experiences of home‐care workers with the ‘Stay Active at Home’ programme targeting reablement of community‐living older adults: An exploratory study

To face the challenges of an ageing population, many Western countries nowadays stimulate an ageing in place policy to empower older adults to grow old in their own homes with the highest degree of self‐reliance. However, many community‐living older adults experience limitations in (instrumental) activities of daily living ((I)ADLs), which may result in a need for home‐care services. Unfortunately, home‐care workers often provide support by taking over tasks, as they are used to doing things for older adults rather than with them, which undermines their possibilities to maintain their self‐care capabilities. In contrast, reablement focuses on capabilities and opportunities of older adults, rather than on disease and dependency. Consequently, older adults are stimulated to be as active as possible during daily and physical activities. The 'Stay Active at Home' programme was designed to train home‐care workers to apply reablement in practice. To explore the experiences of home‐care workers with this programme an exploratory study was conducting in the Netherlands, between April and July, 2017. In total, 20 participants were interviewed: nine nurses (including a district nurse), 10 domestic support workers and the manager of the domestic support workers. The semi‐structured interviews focused on the experienced improvements with regard to knowledge, skills, self‐efficacy and social support. Furthermore, the most and least appreciated programme components were identified. The study has shown that home‐care workers perceived the programme as useful to apply reablement. However, they also need more support with mastering particular skills and dealing with challenging situations. Future implementation of the 'Stay Active at Home' programme can potentially benefit from small adaptions. Furthermore, future research is needed to examine whether the programme leads to more (cost‐) effective home care.     

Caring for children with physical disability in Kenya: potential links between caregiving and carers' physical health

Background The health of a carer is a key factor which can affect the well‐being of the child with disabilities for whom they care. In low‐income countries, many carers of children with disabilities contend with poverty, limited public services and lack assistive devices. In these situations caregiving may require more physical work than in high‐income countries and so carry greater risk of physical injury or health problems. There is some evidence that poverty and limited access to health care and equipment may affect the physical health of those who care for children with disabilities. This study seeks to understand this relationship more clearly. Methods A mixed methods study design was used to identify the potential physical health effects of caring for a child with moderate‐severe motor impairments in Kilifi, Kenya. Qualitative data from in‐depth interviews were thematically analysed and triangulated with data collected during structured physiotherapy assessment. Results Carers commonly reported chronic spinal pain of moderate to severe intensity, which affected essential activities. However, carers differed in how they perceived their physical health to be affected by caregiving, also reporting positive benefits or denying detrimental effects. Carers focussed on support in two key areas; the provision of simple equipment and support for their children to physically access and attend school. Conclusions Carers of children with moderate‐severe motor impairments live with their own physical health challenges. While routine assessments lead to diagnosis of simple musculoskeletal pain syndromes, the overall health status and situation of carers may be more complex. As a consequence, the role of rehabilitation therapists may need to be expanded to effectively evaluate and support carers' health needs. The provision of equipment to improve their child's mobility, respite care or transport to enable school attendance is likely to be helpful to carers and children alike.     

Perceived needs of carers of people with psychosis: An Australian longitudinal population‐based study of caregivers of people with psychotic disorders

Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers’ needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi‐structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy‐eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well‐being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers’ and Users’ Expectations of Services—Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers’ perceived needs. There was minimal improvement in carers’ perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well‐being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers’ perceived needs more holistically in current mental health services. To support carers’ recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well‐being.     

The business of care: the moral labour of care workers

Drawing on a case study conducted in a private residential care home, this article examines the emotional labour of care workers in relation to the moral construction of care and the practical experiences of work. An examination of the company's discursive attempts to construct, manage and demarcate its employees’ emotional labour was carried out alongside an exploration of the carers’ own interpretations of, and enrolment in, the care‐giving role. The potential economic and emotional consequences of these occurrences were a key focus of the inquiry. The study found that carers, encouraged by the company, naturalised their emotional labour, and that this had contradictory consequences. On the one hand it justified the economic devaluation of the carer's work and left her vulnerable to emotional over‐involvement and client aggression. On the other, it allowed the worker to defend the moral interests of those within her care and to see when those interests were in conflict with the economic motivations of her employer.     

Behavioral Observations as Predictors of Children's Social and Cognitive Progress in Day Care

Research in Bahrain has demonstrated that children in educationally oriented day care made significantly greater gains in cognitive, social and emotional measures when compared with children in care‐oriented provision or at home (Hadeed, 1994). The purpose of this study was to examine the classroom contributions (context of activities, teacher and child interactive behaviours) in day care provision that would support these gains. Time‐sampled observations of 2400 one‐minute staff and child observations were recorded on 120 children randomly selected from ten preschool centers: five care and five educationally oriented. The results showed that children at the educationally oriented centers played more at cognitively challenging tasks and engaged in more dialogue with adults and other children than their counterparts at the care oriented centers. They were also more likely to play with their peers either in pairs or parallel social settings. At the care oriented centers children spent more time in adult‐directed group and non‐play activities. Regression analysis revealed that children are more likely to engage in challenging tasks when the tasks are child initiated and teachers are not present. Results also showed that there was a positive relationship between teacher's involvement in scaffolding behaviors (caring, supporting and extending) when tasks were adult directed.     

The role of healthcare support workers in providing palliative and end‐of‐life care in the community: a systematic literature review

Despite the widespread use of Health Care Support Workers (HCSWs) in providing palliative and end‐of‐life care, there is little information available about their contributions towards supporting patients who want to be cared for at home or to die at home. Between January and April 2011, a systematic review was conducted to address two questions: (i) What particular tasks/roles do HCSWs perform when caring for people at the end of life and their families to comply with their desire to remain at home?; (ii) What are the challenges and supporting factors that influence HCSWs’ ability to provide palliative and end‐of‐life care in the community? Databases searched for relevant articles published between 1990 until April 2011 included CINAHL, EMBASE, PsychINFO, British Nursing Index, Web of Science, Medline and ASSIA. In total, 1695 papers were identified and their titles and abstracts were read. Ten papers met the eligibility criteria of the study. After the methodological quality of the studies was appraised, nine papers were included in the review. Judgements regarding eligibility and quality were undertaken independently by the authors. The findings indicate that HCSWs invest a great deal of their time on emotional and social support as well as on assisting in the provision of personal care. They are also involved in providing care for the dying, respite care for family members and offer domestic support. Although it is important to acknowledge the many positive aspects that HCSWs provide, the findings suggest three challenges in the HCSWs role: emotional attachment, role ambiguity and inadequate training. Support factors such as informal peer grief‐support groups, sense of cohesiveness among HCSWs and task orientation enabled HCSWs to overcome these challenges. To conclude, induction and training programmes, a defined period of preceptorship, appropriate support, supervision and clearly defined role boundaries may be helpful in reducing the challenges identified in HCSWs’ roles.     

Descriptive study of carers' support,encouragement and modelling of healthy lifestyle behaviours in residential out‐of‐home care

Objective: Given the high prevalence of overweight/obesity among young people in residential out‐of‐home care (OOHC), and as their carers are in loco parentis, this research aimed: 1) to examine the healthy lifestyle cognitions and behaviours of residential carers; and 2) to describe resources needed to improve diet and/or physical activity outcomes for residents. Methods: Cross‐sectional data were collected from 243 residential carers. Measures included: demographics; knowledge of dietary/physical activity recommendations; self‐reported encouragement/importance of health behaviours; physical activity/screen time (at work); unit ‘healthiness’; and necessary resources for creating a healthy environment. Results: Staff placed importance on the residents eating well and being physically active. However, examination of carer knowledge found significant gaps in staff education. Three key priority areas were identified to help build a healthy food and activity environment in residential OOHC: funding, professional development and policy. Conclusion: Carer knowledge of healthy lifestyles can be improved and they need to be well resourced to ensure children in public care settings live in a healthy environment. Implications: These findings may inform the development of ongoing professional development to improve carers' health literacy, as well as policy to support dietary/activity guidelines for the OOHC sector.     

Developing services to support parents caring for a technology-dependent child at home

BACKGROUND: A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home. AIMS: To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals. RESULTS: Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents. CONCLUSIONS: Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.     

Incredible Years parent training support for foster carers in Wales: a multi‐centre feasibility study

Background the incidence of conduct disorder in young children is 10% in the general population and 37% among fostered children. Up to 40% of untreated children diagnosed with conduct disorder develop problems later in life including drug misuse, criminal and violent behaviour. There are more than 80 000 looked after children in the UK, with 5000 in Wales. Challenging child behaviour is the main reason for placement breakdown and has huge cost implications as challenging children cost up to 10 times more in service use than children without conduct disorder. The Incredible Years (IY) evidence‐based parenting programme is an effective, low cost solution in improving child behaviour and social competence in ‘conventional’ families and thus has the potential to support foster carers in managing difficult behaviours. Our main aims were to establish:

• ? The feasibility of delivery and the effectiveness of the IY parenting programme in supporting carers in managing difficult behaviour in looked after children.
• ? Service use costs for foster carers and looked after child.

Methods This was a 12‐month trial platform study with 46 foster carers in three authorities in Wales. Carers were allocated 2:1 intervention to waiting‐list control. Validated measures were used to assess ‘parenting’ competency, carers' depression levels, child behaviour and service use. Measures were administered at baseline and 6‐month follow‐up. Intervention carers received the programme between baseline and follow‐up. Results Analyses showed a significant reduction in child problem behaviour and improvement in carers' depression levels for intervention families at follow‐up, compared with control. Unexpectedly, there was a significant improvement in control carers' self‐reported ‘parenting’ strategies. Special education was the greatest service cost for looked after children. Conclusions Initial foster carer training could incorporate the IY programme to support carers in establishing positive relationships and managing difficult child behaviour. Programme participation may lead to reduced service use and improved placement stability.     

Carers' reflections on nursing home and NHS long-stay care for elderly patients

The aim of this study was to compare the perceptions of carers of elderly long-stay care patients who are now in nursing homes in three health districts in a former Regional Health Authority and in remaining long-stay geriatric National Health Service (NHS) wards. One hundred and ninety-eight nursing home carers (78%) and 128 NHS carers (83%) were interviewed by telephone, using a semi-structured questionnaire and open questions. The impact of caring at home was shown to be greater on NHS than on nursing home carers. Most were satisfied with the care, staff and atmosphere of the nursing home or hospital. Nursing homes were perceived to offer better ‘hotel’ facilities and a more pleasant environment. They were seen as better at respecting patients' privacy. The NHS was regarded as superior in offering clinical and rehabilitative services. Most participants thought the institution was the right place for their relative, although in general, it was thought to be better to care for elderly people at home. ‘Care in the community’ was supported, but carers were realistic about alternatives when informal care ceased to be a reasonable option. There was little ‘choice’ between public and private sector care. For many patients, entry into the institution followed directly from an acute hospital admission. The only choice was between care in a long-stay facility or remaining at home, with the patient becoming increasingly dependent and the carer becoming increasingly unable to cope. The formal aspect of community care should be to be organized rationally and accepted as a valid response to the needs of some dependent elderly patients and their carers.     

Utilisation of home‐based physician,nurse and personal support worker services within a palliative care programme in Ontario,Canada: trends over 2005–2015

With health system restructuring in Canada and a general preference by care recipients and their families to receive palliative care at home, attention to home‐based palliative care continues to increase. A multidisciplinary team of health professionals is the most common delivery model for home‐based palliative care in Canada. However, little is known about the changing temporal trends in the propensity and intensity of home‐based palliative care. The purpose of this study was to assess the propensity to use home‐based palliative care services, and once used, the intensity of that use for three main service categories: physician visits, nurse visits and care by personal support workers (PSWs) over the last decade. Three prospective cohort data sets were used to track changes in service use over the period 2005 to 2015. Service use for each category was assessed using a two‐part model, and a Heckit regression was performed to assess the presence of selectivity bias. Service propensity was modelled using multivariate logistic regression analysis and service intensity was modelled using log‐transformed ordinary least squares regression analysis. Both the propensity and intensity to use home‐based physician visits and PSWs increased over the last decade, while service propensity and the intensity of nurse visits decreased. Meanwhile, there was a general tendency for service propensity and intensity to increase as the end of life approached. These findings demonstrate temporal changes towards increased use of home‐based palliative care, and a shift to substitute care away from nursing to less expensive forms of care, specifically PSWs. These findings may provide a general idea of the types of services that are used more intensely and require more resources from multidisciplinary teams, as increased use of home‐based palliative care has placed dramatic pressures on the budgets of local home and community care organisations.