Dilemmas in the provision of own-home respite support for parents of young children with complex health care needs: evidence from an evaluation

Dilemmas in the provision of own-home respite support for parents of young children with complex health care needs: evidence from an evaluation Aims. The aim of this article is to present some of the results of a qualitative evaluation of a United Kingdom (UK) nurse-led, home-based, respite service for the families of children under the age of five with complex health care needs. Background. Advances in neonatal medical and nursing care have contributed to a growth in the number of children who survive low birth weight, birth trauma, and various congenital anomalies. Many of these children are likely to have long-term care needs which will require innovative nursing responses. Of particular importance is the need for parental respite, given the added demands of caring for very ill children at home. Methods. A parent-centred, follow-up evaluation, using in-depth qualitative interviews with parents in 18 families consecutively referred to the Children's Outreach Service between April and December 1997. Findings. This evaluation reveals the sometimes mixed reactions of parents to this innovative service, and the equivocal evidence about its role in contributing to family well-being. We discuss, from the perspective of parents using the service, some of the dilemmas and problems in the provision of home-based respite support to this client group. In particular, we explore the diverse ways in which families talk about their need for respite support and point to the need for flexibility in this kind of service provision if these support needs are to be met. Conclusion. We conclude by discussing the practice implications of our evaluation for those planning similar services.     

Issues of power, control and choice in children's hospice respite care services: a qualitative study

The changes within children's palliative care services in the UK over the last decade highlight the importance of respite provision. This article reports on an evaluation of a children's hospice in northern England that was undertaken to elicit the views of 24 service users on their experiences of respite care in the hospice: parents, children and young people, siblings, guardians and family carers. Data were collected using in-depth interviews, transcribed and submitted to framework analysis. The findings demonstrate the tensions that parents in need of respite care feel as a result of the power unconsciously exercised by staff. Redistribution of resources and reordering of priorities are recommended to prevent the inadvertent impact upon families.     

Respite support for children with a life-limiting condition and their parents: a literature review

Most children with a life-limiting condition are cared for in the family home by their parents, who require professional support to provide this care. Owing to advances in medicine and medical technology these children are living longer and, given the often relentless and all-encompassing nature of caring for children with life-limiting conditions, respite (facilitation of short breaks) is considered central to quality palliative care provision for children and their families. However, there is still ambiguity in exactly what is meant by the term 'respite', what constitutes respite care, whether the services currently provided meet the needs of the child and family, and how respite is best provided. This paper reviews the literature relating to respite as a component of children's palliative care. Themes from the literature are identified and discussed. Challenges for the providers of respite care are identified and suggestions made regarding the future development of responsive and family-focused respite care.     

Factors influencing the use and provision of respite care services for older families of people with a severe mental illness

Family carers of people with a severe mental illness play a vital, yet often unrecognized and undervalued role in Australian society. Respite care services can assist these family carers in their role; however, little is known about their access to these services. The paper addresses this knowledge gap. An exploratory field study was conducted throughout the eastern suburbs of Sydney, Australia, to identify and examine the factors influencing the use and provision of respite services for older carers of people with a mental illness. Semistructured, in-depth interviews, and structured self-completed questionnaires were conducted with older family carers, mental health care professionals, and respite care service providers. Additionally, relevant documents (local policies, strategic plans and reports on respite care) were reviewed. It was found that current respite services are problematic for older family carers of Australians with a mental illness, signalling the need for concerted efforts by carers, health professionals, and service providers to improve access. Changes to respite provision and utilization are recommended.     

Staff and home caregiver expectations of residential respite care for older people

It is generally agreed that relieving the burden experienced by home caregivers caring for older people should be one of the main aims for respite services that are provided. Over the past four years the use of residential respite care has quadrupled in Australia but it remains underutilised. To improve the uptake of this valued service, one hundred home caregivers and 25 staff from residential aged care facilities were surveyed about why residential respite care was being used and what their expectations were. This study provided insight into the value that is placed on residential respite care by identifying reasons and expectations for use so that nursing care and service provision can be continually directed at meeting these needs.     

Effects of respite care for children with developmental disabilities: evaluation of an intervention for at risk families

Respite child care programs that provide temporary child care, support, and referral services to families of children with developmental disabilities are thought to be a critical component of formal social support interventions deemed necessary to promote healthy family functioning and prevent child maltreatment. This study describes sociodemographic characteristics, parenting stress levels, foster care placement, and founded child maltreatment rates in families of children with developmental disabilities who were using respite care services in a rural Midwestern state. Comparison of matched pre- and post-test Parenting Stress Index scores indicated significant decreases in Total Stress scores (t=3.27, df=86, p=0.0016), Parent Domain scores (t=3.55, df=86, p=0.0006), and Child Domain scores (t=2.2, df=86, p=0.02) following provision of respite care. Through logistic regression, it was determined that life stress, social support, and service level were significantly related to the occurrence of child maltreatment during enrollment ( p < 0.05). The investigator suggests that public health nurses can enhance their case management strategies when working with the parents of children with developmental disabilities by monitoring for caregiver burnout in addition to ensuring that the child is receiving care appropriate for his or her level of need.     

Respite care for caregivers and people with severe mental illness: literature review

AIM: The aim of this study was to review research literature over the past 10 years on respite care for people affected by severe mental illness; and identify key implications for nursing practice in provision of respite care for family caregivers of people with severe mental illness. BACKGROUND: Family caregivers play an important role in health care, but need regular breaks to maintain their own health and well-being. Respite care is one of the few services available with a primary focus on supporting family caregivers. In most developed countries the notion of respite care as an extension of the health care service has been embraced, evidenced by a growing body of literature in health and health-related disciplines. METHODS: An initial literature search was undertaken using the key words "respite", "short-term care", "shared care" and "day care" in major electronic databases for nursing, psychiatry, psychology and sociology literature between 1967 and 2002, identifying 704 articles. Closer examination of the literature from 1993 to 2002 on gaps and trends in respite care for people affected by severe mental illness was conducted. This is discussed in the context of the broader literature, particularly on dementia, where the mainstream research on respite care is found. RESULTS: The majority of family caregiving studies identified a need for greater quality, quantity, variety and flexibility in respite provision, and the literature has remained largely silent in relation to those affected by severe mental illness. There are contradictory findings on outcomes of respite care services and a lack of controlled empirical studies and evaluative research on effectiveness. CONCLUSIONS: Respite care is beneficial for caregivers, there is significant unmet need in provision of services for the mentally ill, and greater flexibility and the needs of caregivers should be recognised and addressed.     

Strategic Service Change: Development of Core Services in Wales, 1983–19951

National strategies for the development of services for specific client groups are rare in Britain, particularly strategies to which governments pledge significant long term financial investment. This paper attempts to guage the impact of one such strategy, the All Wales Strategy for the Development of Services for Mentally Handicapped People (AWS) (Welsh Office, 1983) by comparing the goals of the AWS with changes in the nature and coverage of services which have followed its inception. Data on the provision of residential, day, education and family support services in Wales were collected in 1995 from county annual plans, Welsh Office statistical returns and questionnaires to county officers. These sources were cross referenced and the data compared with those reported in a companion paper (Beyer et al., 1991) for 1983 (the first year of the AWS) and 1988. Between 1983 and 1995, deinstitutionalisation accelerated, residential services were reprovided by combined statutory and independent sector action, size of residential settings reduced considerably, the range of day activities diversified, mainstream education was available to more children with learning disabilities, respite care became largely community based and the availability of domiciliary support increased significantly. Although the pace of change quickened between 1988 and 1995 compared to that in the first five years of the AWS, a wholesale reorientation of traditional services is far from complete. Changes in service provision in Wales during the course of the AWS are compared where possible to development elsewhere in Britain.     

The meaning of respite care to mothers of children with learning disabilities: two Irish case studies

There is a growing interest in Ireland in the nature and significance of respite care for carers and those for whom they care. The relationship of individual stress with caring full time for a child who is learning disabled is well documented. Provision of respite care is seen as an important means of alleviating individual carer stress. Yet, the apparent benefits of respite care have been called into question. The present study looks at this issue within the context of respite service provision in Ireland for young people with learning disabilities. A phenomenological approach was used to explore the views of two mothers on respite care and, in particular, its personal significance for them within the context of their caring relationship for their children. The authors found that for these two mothers, whilst some of the predicted benefits of respite care were present, for example improved social activity, their use of respite care and the experience of separation initiated feelings of guilt and appeared to engender a degree of emotional stress. It is argued that providers of respite services in Ireland need to consider how they can support parents who use respite care so that they see its use as a mark of caring for their child and thereby alleviate such feelings of guilt.     

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.     

Paediatric respite care: a literature review from New Zealand

This paper reviews relevant international and New Zealand literature, policy documents and reports on respite provision for children who are dying and their families. The literature describes why respite care for children is necessary, and evaluates present respite services in accord with recent reports and literature. The service provisions needed for dying children and their families are explored, including suggestions for the improvement of services and future research. The literature reveals that, although respite care for terminally ill children and their families is necessary, service provisions are uncoordinated, not always culturally sensitive and very limited for children and their families. Improvement in paediatric respite services is necessary and research needs to be conducted in this area to facilitate the development of more appropriate respite services for children and their families.     

Respite Care for Families of Special Needs Children: A Systematic Review

Over the past two decades, there have been numerous technological advances, which have led to a greater survival rate among children with disabilities and complex health care needs. This has placed wide-ranging and sometimes overwhelming emotional, social, and financial stressors on the family. Ineffective support can affect the wellbeing of all family members, consequently requiring services needed to meet both their child’s and their own support needs. Provision of respite is one such service, which allows therapeutic opportunities, quality time, independence, and the living of life for all family members. A synthesis of findings from the research indicate that respite care can be an appropriate and effective intervention to decrease stress and should be used as an appropriate coping strategy for parents of children with disabilities.     

A pediatric learning experience: respite care for families with children with special needs

Respite care provides temporary relief from the demands of constant caregiving for primary care givers. While better known in geriatrics, respite care can also promote family well-being and enhance the coping abilities of parents with children with special needs. The authors describe how a respite care service and a department of nursing collaborated to provide respite care to parents of children with special needs, thus providing a much needed service in the community as well as a unique clinical experience for nursing students.     

Willingness to use respite care among family caregivers in Northern Taiwan

Aim and objectives. Investigate the use of respite care among family caregivers and examine factors related to their willingness to use such care. Background. Respite care is a pivotal service for supporting family caregivers. Although research related to respite care is not a new field in western societies, such studies have rarely been done for Asian populations. Design. A cross‐sectional study. Methods. The study was conducted using a convenience sample of 100 family caregivers obtained through four home health care agencies in Northern Taiwan. Structured face‐to face interviews were conducted in home settings. Caregivers were divided into a willingness group and a non‐willingness group. The quantitative data were analysed using t‐test, chi‐square and multiple logistic regression. Results. Sixty‐five per cent of the caregivers interviewed did not know about respite care services. The prevalence of respite care use was 11%. Eighty‐nine per cent of the caregivers had never used respite care: 60·7% of them reported that they would never use it and 39·3% of the caregivers indicated that they were willing to use respite care in the future. This study showed that willingness to use respite care was higher when the respite services matched the needs of the caregivers as well as the caregivers perceived higher caregiving burden. Conclusions. These results suggest that respite care services should be explained more explicitly to family caregivers. Also, any respite care plan must consider the family caregivers burden, both perceived and realistically. Relevance to clinical practice. The willingness to use respite care is a culturally sensitive issue. Health care providers must act as advocates to improve respite care policy. They must ensure that respite care fits caregivers’ needs and they must help caregivers overcome the social or cultural barriers to respite care.     

Teenagers' and parents' views on a short-break service for children with life-limiting conditions: a qualitative study

Few opportunities exist outside the home for children and teenagers with life-limiting conditions to have a break in a setting specifically designed and adequately staffed and resourced to meet their complex clinical, practical and emotional needs; until recently provision focused primarily on providing respite for parents/carers. Based on policy recommendations, a short-break service was established with the aim of working in partnership with families and voluntary and statutory agencies to provide a fun break for children and teenagers with life-limiting conditions and complement the range of services available. This qualitative study used interviews and focus groups to determine teenagers' and parents' views of the service. Three themes emerged: accessibility and communication; needs and boundaries; and shaping the service. Teenagers enjoyed regular planned residential breaks, access to skilled staff and bespoke facilities to support their needs, opportunities to meet others with life-limiting conditions and fun time away from home, thereby giving parents peace of mind, a regular planned break from care-giving, opportunities to meet other parents and to spend exclusive time with their other children. If specialist short-break services become part of the national range of services available, children and teenagers with life-limiting conditions and their parents and siblings could all benefit.     

Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada.The perspectives of non-hospice health care professionals (n=4) involved in the child's care are explored. Data were gathered through audio-taped, semi-structured interviews. Initially, parents and health professionals were unaware that the hospice provided more than just end-of-life services. Parents began to consider hospice care when something changed in their lives that forced them to see things differently. This became the impetus for recognizing that CPCH might be a resource for their family. The prospect of respite care was usually the deciding factor in applying to the hospice. Parents reported benefits of hospice respite for themselves and the whole family. Recommendations for practice and future research are offered, including discussion about the feasibility of the study procedures.     

A survey of the perspectives of specialist palliative care providers in the UK of inpatient respite

One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cross-sectional survey of inpatient respite care provision provided by specialist palliative care services and hospices in the UK. A structured questionnaire was mailed to 242 clinical services managers listed in the Hospice Information Directory in 2003. A 69% response rate was achieved. The questionnaire explored the nature of respite services, their purpose, organization, delivery and examined definitions used. The analysis indicated that 80% of the sample provided inpatient respite care. Most inpatient respite admissions were planned, of fixed duration (7-14 days) and were intended to benefit patients and carers. There was some evidence that respite provision was regarded as a lower priority than admissions for symptom control and terminal care, and that patients' needs were prioritized over those of carers. Only 10% of services conducted regular, routine audit, with very few seeking the views of service users. Findings suggest that carers' needs and wishes are not prioritized by specialist palliative care services offering inpatient respite, which may mean that they find it difficult to maintain their caregiving roles over longer disease trajectories or in the face of overwhelming demands.     

Respite care for children, young people and families--are their needs addressed?

In recent years there has been an increasing demand for respite care in the community setting, as advances in medicine and technology have enhanced the life expectancy of children and young people with a life-limiting illness. However, the need for flexible respite provision in the home frequently presents a challenge for those health care professionals involved in caring for these children and their families. Following a review of literature this paper will demonstrate how a family-centred approach to respite provision and palliative care can enhance the quality of life for a child nearing the end of life and support the expressed needs of the child's family with accessible respite care.