Report: Give me a break

Seriously ill children need short breaks which can meet their often complex physical, emotional, social and spiritual needs.  This new report demonstrates short break care for seriously ill children reduces the risks of parents experiencing poor physical and mental health.  This reduces their demand for NHS services and the number of sick days they need to take off work.  

Julia House & Together For Short Lives, October 2020.   Give me a break: how the UK Government can improve parental health and  reduce health inequalities by allocating short break funding for seriously ill children in England at the Comprehensive Spending Review. 27 pages.

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Report: The economic benefits of short breaks for families of children with life-limiting and life-threatening conditions

The parents of children in need of palliative care are often the primary carers: facing psychological, physical and social distress due the responsibilities of their roles.  One of the ways to support carers in this role is to provide short break care.  Together for Short Lives asked Pro Bono Economics to estimate the potential taxpayer benefit if all parents providing palliative care to their children were able to access short break care. 

Probono Economics. August 2020.  The economic benefits of short breaks for families of children with life-limiting and life-threatening conditions. Together for Short Lives, and Julie House Children's Hospice.  26 pages.  

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

With technological  and medical advancements, the number of young people with life-limiting conditions surviving into adulthood and requiring transition into adulthood is increasing. This article looks at what options are available for young people other than children's hospice care for respite care. Using semi-structured interviews and mixed-method survey, the findings showed that there were few or no appropriate short break and emergency care alternatives, creating anxiety for children's hospice users.  The authors conclude access to appropriate short break care is required to prevent lifelong negative consequences for young people with life-limiting conditions and their families.

Mitchell, T. Knighting, K. O'Brien, M. & Jack, B. 2016. Short break and emergency respite care: what options for young people with life-limiting conditions.  International Journal of Palliative Nursing, 22 (2) p 57 - 65.

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[Article] Parental decision-making on using out of home respite in children's palliative care

The paper examined the views and experiences of parents of children with life-limiting conditions on out of home respite care in Ireland.   A total of 19 in-depth interviews were conducted with mothers and fathers. Each family reported vastly different needs and experiences of respite care. For all parents, regardless of their child's age or condition, home was the location of choice for care.  Factors that concerned parents with out of home care included past experiences of in-patient care, staff turnover, trust and confidence in care providers, and travel and distance to respite centres. A new model of care based on the findings of this research is presented.

Ling, J., Payne, S., Connaire, K. & McCarron, M. 2016.  Parental decision-making on using out of home respite in children's palliative care: findings of qualitative case study research - a proposed new model.  Child: care, health and development, 42 (1) p 51-59.

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