Matching short break services for children with learning disabilities to family needs and preferences

Short breaks or respite care is a much-valued service by families and the demand for it is likely to exceed supply. It is all the more imperative that the services provided are matched to the needs and preferences of families. A census was undertaken within one Health and Social Services Board in Northern Ireland of families who received short break services for their child with disabilities during a 12-month period. Information was also collected on pertinent child and family characteristics. This enabled profiles to be drawn up of the recipients of six types of short-term breaks: (1) hospital-based overnight care; (2) overnight stays in a residential home; (3) domiciliary service in the family home; (4) breaks provided in another family home; (5) residential holidays; and (6) breaks provided through leisure schemes organized after-school or during holidays. A second study entailed interviews with families who were resident in one area served by a Health and Social Service Trust regarding their usage and preferences for each type of service noted above. This too identified variations in parental preferences and usage. This information gathered should assist commissioners in developing cost-beneficial short break services although further research is needed to validate the possible predictors for each service.     

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.     

“Between the Devil and the Deep Blue Sea”: The Beliefs of Caregivers of People With Dementia Regarding the Use of In-Home Respite Services

This article details results from qualitative research with caregivers in regard to the beliefs they associate with the use of in-home respite services. Outcomes are perceived by caregivers in relation to care recipient personal safety and the avoidance of negative consequences through the provision of supervision in the caregiver's absence. Use of in-home services challenges normative beliefs for some caregivers, particularly for spousal caregivers who feel it is their role to provide assistance that is needed in the home. Likewise, perceived inflexibility and the inability of in-home services to provide responsive and personalized care make the use of in-home services difficult and may inform control beliefs. Implications are discussed in relation to community care pathways and the promotion and development of in-home respite services to better target caregiver beliefs and respond to caregiver perceived needs.     

Immunizations in Children with Special Health Care Needs in a Medical Home Model of Care

Objective To assess whether a model of care with augmented services within an existing medical home could improve immunization rates for Children with Special Health Care Needs (CSHCN) and to evaluate the influence of family and practice characteristics on these children’s immunization rates. Method Participants were six general pediatric practices, CSHCN, and their families. Enhancements were added to the medical home for CSHCN, including additional nurse practitioner time. A prospective survey and chart review of volunteer families was made in 1998 repeating the chart review in 2000. Results The immunization rates of CSHCN in the practices before the intervention was 83.4% for DTaP, polio and MMR and 80% if HIB and HepB were added. The intervention did not improve these already high rates. In regression models, children with late onset disorders were more likely NOT to be up-to-date (UTD) by 2 years of age (OR 3.29). CSHCN cared for by non-birth parents and CSHCN whose family incomes were greater than $40,000 per year were also more likely NOT to be UTD (OR 3.81, 2.75 respectively) as were patients of providers not satisfied with any aspect of serving patients (OR 3.29). Conclusions In these practices already committed to a medical home model of care for CSHCN, immunization rates were at or above state and national averages before any intervention took place. Some groups of patients among these CSHCN were more likely to be delayed with immunizations, including those with late onset disorders and those with high family incomes.     

A national audit of home and community-based care (HCBC) organisations in South Africa

Home and community-based care (HCBC) has emerged as a way to provide cost-effective and compassionate care to people living with HIV (PLHIV) and those affected by the epidemic. HCBC organisations provide integrated services which address the basic needs of those infected and affected such as food, shelter, healthcare, protection from abuse and malnutrition. The main objective of this study was to conduct an audit of HCBC organisations in South Africa in order to provide the Government with empirical information on their existence, distribution, services and challenges. The primary approach to this task was to conduct a telephonic audit of organisations rendering HCBC services. Of the 2001 HCBC organisations that participated in the audit, the majority were situated in Limpopo and KwaZulu-Natal Provinces. More than half of all the organisations were located in the rural areas. The audited HCBC organisations targeted orphans and vulnerable children, PLHIV and vulnerable households and provided services such as conducting home visits, providing material and psychosocial support and running support groups. Most of the organisations were, however, faced with challenges such as lack of access to water, electricity and computer equipment and a formal office space. In addition, some organisations were in need of funds for stipends for their community caregivers. Non-availability of funds for stipends and necessary assets might affect the quality of HCBC services rendered. The findings of the study therefore suggest the need for more financial assistance from the Government and other stakeholders for organisations rendering HCBC services, in order for them to afford necessary assets and provide sustainable, high-quality services that can help in reducing HIV impacts in South Africa.     

Does Respite Care Reduce Parental Stress in Families with Developmentally Disabled Children?

Caring for a developmentally disabled child can be extremely stressful for many parents. Respite care is designed in part to alleviate this stress. This paper reviews studies that have evaluated the effects of respite care services used by families who have children with developmental disabilities, with an emphasis on parental stress. In general the results of this review suggest that, at least in the short-term, respite care is associated with significant reductions in parental stress for the majority of parents who use it. However, the database on this issue is relatively small and many studies have significant limitations, particularly in their almost exclusive reliance on indirect measures of stress reduction and associated benefits (e.g., increased coping, improved quality of life). Additional research is needed to address these limitations. In the meantime, respite care providers should seek to evaluate the effects on, appropriateness for, and acceptability of its services at the level of the individual family.     

Depressive Symptoms and Use of Home-Based Respite Time in Family Caregivers

This study investigated the relationship between activities during respite time and depressive symptoms in family caregivers (N = 74) of older adults receiving in-home respite services. Contrary to prior research, demographic contextual variables (caregiver gender, household income, and dyad relationship) and care recipient problems (behavioral dysfunction and functional impairment) were not associated with caregiver depressive symptoms, nor was total minutes engaged in discretionary activities during respite. Self-reported depressive symptomatology in family caregivers was significantly and inversely related to both past service usage and total minutes of chore time completed on a typical home-based respite day. Implications for research in this area and service delivery are discussed.     

Labor market work and home care's unpaid caregivers: a systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work

As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labor market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labor force as noncaregivers; second, caregivers are more likely to work fewer hours in the labor market than noncaregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labor market than noncaregivers. Policy recommendations are targeting greater access to formal care for "intensive" caregivers and developing workplace policies for employed caregivers.