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

Ling, Julie

doi:10.12968/ijpn.2012.18.3.129

Cited by 26 publications

(33 citation statements)

References 26 publications

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“…Furthermore, other providers in the community such as direct payment workers were reported as being unable to provide responsive 24/7 care and lacking the necessary skills. These findings support previous studies which suggest that alternative care providers are unable to meet the unique palliative care and multiple complex healthcare needs of these young people (Ling, 2012;Thomas and Price, 2012;Carter et al, 2013; House of Commons Health Committee (HoCHC), 2015a).…”

Section: Discussionsupporting

confidence: 88%

“…Palliative care for children includes the provision of respite care and short breaks (World Health Organisation (WHO), 2015), whereas palliative care for adults typically focusses more upon predictable palliative care needs, one episode of end-of-life care and symptom management (TfSL, 2015d;Ling, 2012;Hill and Coyne, 2012).…”

Section: Discussionmentioning

confidence: 99%

“…Only a limited number of care providers can meet the individual and complex needs of this growing and ageing population, resulting in young people with LLCs and their families having difficulty in obtaining services (Ling, 2012;Thomas and Price, 2012;Noyes et al, 2013). Difficulties in providing appropriate palliative care services arise because the condition may be rare, specific to childhood, or distinctly different to those of older adults (Rogers et al, 2011;Ling, 2012).…”

mentioning

confidence: 99%

“…Difficulties in providing appropriate palliative care services arise because the condition may be rare, specific to childhood, or distinctly different to those of older adults (Rogers et al, 2011;Ling, 2012). Additionally, the illness may follow a different trajectory to adult conditions (Smith et al, 2014).…”

mentioning

confidence: 99%

“…Additionally, the illness may follow a different trajectory to adult conditions (Smith et al, 2014). These young people may require many episodes of critical illness management over a prolonged period of time before requiring end-of-life care, whereas adult patients typically have more predictable palliative care needs, often requiring only one episode of end-of-life care (Ling, 2012;Hill and Coyne, 2012).…”

mentioning

confidence: 99%

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

et al. 2016

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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.

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Section: Discussionsupporting

confidence: 88%

Section: Discussionmentioning

confidence: 99%