Tracy K Mitchell1, Katherine Knighting2, Mary R O'Brien3, Barbara A Jack4. 1. Research Assistant, at the Evidence-Based Practice Research Centre, Edge Hill University, Faculty of Health and Social Care, Ormskirk, Lancashire, UK. 2. Senior Research Fellow, at the Evidence-Based Practice Research Centre, Edge Hill University, Faculty of Health and Social Care, Ormskirk, Lancashire, UK. 3. Professor of Palliative and Supportive Care, at the Evidence-Based Practice Research Centre, Edge Hill University, Faculty of Health and Social Care, Ormskirk, Lancashire, UK. 4. Director and Head of Research and Scholarship, at the Evidence-Based Practice Research Centre, Edge Hill University, Faculty of Health and Social Care, Ormskirk, Lancashire, UK.
Abstract
BACKGROUND: Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care. OBJECTIVE: To explore alternative short break and emergency respite care options to children's hospice care. METHODS: A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only. RESULTS: There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria. CONCLUSION: Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.
BACKGROUND: Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care. OBJECTIVE: To explore alternative short break and emergency respite care options to children's hospice care. METHODS: A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only. RESULTS: There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria. CONCLUSION: Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.
Entities:
Keywords:
Life-limiting conditions; Palliative care; Respite care; Short breaks; Transition; Young people
Authors: Gerlinde Pilkington; Katherine Knighting; Lucy Bray; Julia Downing; Barbara A Jack; Michelle Maden; Ceu Mateus; Jane Noyes; Mary R O'Brien; Brenda Roe; Anthony Tsang; Sally Spencer Journal: BMJ Open Date: 2019-06-17 Impact factor: 2.692