Short break and emergency respite care: what options for young people with life-limiting conditions?

Abstract

What this paper adds: The paper recommends the availability of planned short breaks and appropriate emergency respite care for all young people with life-limiting conditions to prevent carer burnout, deterioration in health and wellbeing, and inappropriate hospital admission. This paper highlights the lack of appropriate short break and emergency respite care provision when children's hospice provision is not available for children's hospice users, and those making the transition from them. This is despite a clear need for this care provision being expressed by families, health and social care professionals and hospice staff. Implications for theory, practice or policy:Policy makers and funding bodies should review access to appropriate short break and emergency care provision from a range of services for young people with life-limiting conditions. Particular attention is needed for the increasing numbers of young people with life-limiting illnesses who are reaching the upper age limit of children's hospice service provision and requiring transition into adult services.

Respite care and short breaks for young adults aged 18–40 with complex health-care needs: mixed-methods systematic review and conceptual framework development

“…3,13,24,26 Limited respite care, particularly for those with highly complex health needs, is available for planned short breaks or emergency family situations once young adults with complex health-care needs have transitioned to adult services. 3,13,27 The definition of 'residential short breaks' for young people with disabilities varies considerably between social care authorities, ranging from residential schools, sitting services and day care in the home or other settings, to flexible packages tailored to suit individuals. 6 This is an element of the wider problem of service model variation across health and social care in terms of service definition, commissioning, funding and delivery, even within the same authority.…”

“…The limited evidence indicates that respite care and short breaks may have a broad range of benefits, such as increasing family-carer resilience, 27 improving the psychological well-being of parents, 16,31 reducing the risk of carer breakdown 23,27 and avoiding costly unplanned hospital admissions, a longer length of stay and social care intervention. 32,33 However, most of the evidence on the use and impact of respite care and short breaks relates to children's services, such as hospices, rather than services for young adults with LLCs, partly because, until relatively recently, so few children survived into adulthood.…”

“…No service-provider perspective Five sources 27,60,61,71,72 Practical barriers to accessing respite care were identified, including volume and complexity of paperwork; delay between referral and service provision; the distance between home and the service; limited access to condition-specific services; lack of physical space for equipment in the available setting; lack of appropriately trained staff and limited inclusion of BAME populations High confidence Minor concerns for methodological limitations, coherence and adequacy.…”

Meeting the needs of young adults with life‐limiting conditions: A UK survey of current provision and future challenges for hospices

“…Evidence on the use and impact of respite services/short breaks for children and young people with LLCs demonstrates that respite care is essential for increasing family carer resilience (Mitchell, Knighting, O'Brien, & Jack, ; Whiting, ), reducing the risk of carer breakdown (Carter, Edwards, & Hunt, ; Mitchell et al., ; Remedios et al., ) and avoiding unplanned hospital admissions or social care intervention (Ling, ; Robertson et al., ). These benefits are linked to parents and carers having a break from intensive care provision, reduced fatigue, improved quality of life (Remedios et al., ), increased trust and confidence in the care being provided to their child, improved emotional and social support (Ling, ; Mitchell et al., ; Whiting, ) and more time to spend with each other and their other children (Robertson et al., ). During times of crisis such as family illness, some providers offer emergency respite in hospice or at home which is highly valued by families (Knighting, Mitchell, O'Brien, & Jack, ).…”

“…Whilst transition can be well planned with appropriate respite/short break care for some families, other parents have described the transition process as “like falling off a cliff” when support from children's services ends and appropriate adult services are not available (TfSL, 2015d). For those who have used a children's hospice, transition can also result in young adults and their families feeling abandoned by having to leave a familiar and supportive environment as well as being detached from relationships they have built up over several years (Mitchell et al., ). Despite increasing research on young people's transition into adult health services, there is little evidence about the quality, accessibility or availability of respite/short break care or broader hospice services for young adults with LLCs and the impact has on their health and well‐being and that of their family (Remedios et al., ).…”