Jack, Barbara

Knighting, Katherine

Mitchell, Tracy

O'Brien, Mary

Sutherland-Oakes, Janet

AIM To explore the impact of the planned and emergency care provided by a children’s hospice on children and young people with life-limiting conditions, their families and stakeholders to inform future service development. METHODOLOGY A two phase mixed-method qualitative and quantitative study with young people, families, health and social care professionals and hospice staff. Phase1 Semi-structured interviews and focus groups (n=53) Phase 2 Electronic survey (n=82) Total (n=135) ANALYSIS Thematic analysis and descriptive statistics. SELECTED RESULTS • Families have limited or no other choice of alternative planned short breaks or emergency respite care provision when children’s hospice care is unavailable. • Families nor stakeholders had clear answers for how best to balance planned short breaks and emergency respite care provision, to enable the hospice to reach out to as many families as possible. • Participants spoke of genuine concerns about the lack of appropriate respite provision on children and family’s outcomes following discharge from the children’s hospice. CONCLUSION Families need regular respite and support to continue to be able to meet the child’s complex care needs. The lack of alternative respite care outside of and after children’s hospice discharge can have far reaching consequences for the child, family and society

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CONCLUSIONFamilies need regular respite & support to continue to be able to meet the child’s complex care needs. The lack of appropriate planned & emergency respite care when children’s hospice care is not available, or following children’s hospice discharge, can have far reaching consequences for the child, family & society.Emergency Care Impact Assessment (ECIA) Project: Claire House Children’s HospiceMitchell T 1 Knighting K 1  O’Brien MR 1 Jack BA 1 Sutherland-Oakes J 21 Evidence-based Practice Research Centre, Edge Hill University, UK  2 Claire House Children’s Hospice, UKMETHODOLOGYA two-phase, mixed method, qualitative & quantitative study involving young people, families, health & social care professionals & hospice staff. PHASE 1Qualitative semi-structured interviews & focus groups (n=53)PHASE 2Electronic survey - Quantitative & qualitative data (n=82)TOTAL (n=135)ANALYSISThematic analysis & descriptive statisticsSELECTED RESULTS The excellent quality & range of hospice services were highly valued by all participants. Participants raised concerns about the lack of other appropriate services for planned & emergency respite care when children’s hospice care is unavailable, or following discharge from the service at 23 years of age.Balancing the provision & availability of planned & emergency respite care is challenging. Participants ranked the importance of the three core services as (1st) end of life care, (2nd) emergency respite care & (3rd) planned respite care, whilst recognising the value of planned respite care for building  trust &  continuity of care in an emergency. AIMTo explore the impact of the hospice planned & emergency respite care on children & young people with life-limiting conditions, their families & stakeholders, to inform future service development.FUNDED BYBACKGROUNDService providers face difficult decisions about how best to balance & provide high quality planned respite care (planned short breaks) & emergency respite care to meet the needs of an increasing population of children & young people with life-limiting conditions & their families.(Emergency respite care refers to a family emergency – NOT a medical crisis for thechild/young person)“Caring for our daughter is 24/7 & exhausting & emotionally draining. We know her health needs are competently cared for whilst staying over at Claire House” (FS29, family survey)“The support makes you feel that you are not alone & that your children are not left in a vulnerable position at a difficult family time” (FS2, family survey)“Frankly I don't know how we are going to face the future without Claire House” (F2, family interview)Contact: Tracy Mitchell, Evidence-Based Practice Research Centre (EPRC), Faculty of Health & Social Care, Edge Hill University, Ormskirk, L39 4QP UNITED KINGDOM Tel +44 (0)1695 650847   Email: Tracy.Mitchell@edgehill.ac.uk 

Emergency Care Impact Assessment (ECIA) Project: Exploring the impact of children’s hospice services upon hospice users and stakeholders.

https://research.edgehill.ac.uk/ws/files/20103638/IPCNC%202015%20PosterTracy%20Mitchell%20Poster%20Exhibition%2018.8.15.pdf

Emergency Care Impact Assessment (ECIA) Project: Exploring the impact of children’s hospice services upon hospice users and stakeholders.

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