Respite care in seven families with children with complex care needs

Abstract

Respite care is highly beneficial to family life, but there need to be clearer communication lines and a stable, flexible and adequately resourced workforce. Families value a single point of contact and would prefer more respite care to be available.

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

“…It can result in stress and isolation, negatively impacting upon the health, education, social wellbeing, family functioning, financial stability and quality of life of the whole family, including siblings and grandparents. These findings are congruent with previous research which adds that the effects can be lifelong (Thomas and Price, 2012;Remedios et al, 2015).…”

“…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).…”

“…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).…”

Parental decision‐making on utilisation of out‐of‐home respite in children's palliative care: findings of qualitative case study research ‐ a proposed new model

“…Initially lacking confidence, experience and skill, parents become adept at caring for their child, often becoming the 'expert' carer (Kirk & Glendinning 2002), with varying degrees of support from healthcare providers and in some cases extended family members. The majority of care is provided in the family home; however, assistance with care often depends on diagnosis and geographical location (Steele 2000;Davies et al 2004;Thomas & Price 2012). The unremitting responsibilities of caring for a child with a life-limiting condition effects all aspects of family life (Steele & Davis 2006;Rodriguez & King.…”

Family and healthcare professionals’ perceptions of a pilot hospice at home programme for children: a qualitative study

“…This refers to the provision of care to children with a life-threatening condition for a specific period of time with the intent of providing temporary relief to the main carers and their family. However, there can be challenges in the time it takes to access such services [5] and parents have identified a need for the provision of this service in the home [6, 7]. In addition to international support for the provision of respite care [8, 9] this need was also identified in a number of national reports on palliative care service provision in Ireland.…”