{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,12]],"date-time":"2026-03-12T13:21:00Z","timestamp":1773321660763,"version":"3.50.1"},"reference-count":35,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2015,11,7]],"date-time":"2015-11-07T00:00:00Z","timestamp":1446854400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Health Research Board, Ireland"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Child"],"published-print":{"date-parts":[[2016,1]]},"abstract":"<jats:title>Summary<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision\u2010making regarding the utilisation of out\u2010of\u2010home respite is dependent on many interlinking factors including the child's age, diagnosis, geographical location and the family's capacity to meet their child's care needs. A proposed model for out\u2010of\u2010home respite has been developed based on the findings of qualitative case study research.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Utilising multiple, longitudinal, qualitative case study design, the respite needs and experiences of parents caring for a child with a life\u2010limiting condition were explored. Multiple, in\u2010depth interviews were undertaken with the parents identified by a hospital\u2010based children's palliative care team. Data were analysed using thematic analysis. Each individual case consists of a whole study. Cross\u2010case comparison was also conducted.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Nine families were recruited and followed for two years. A total of 19 in\u2010depth interviews were conducted with mothers and fathers (one or both) caring for a child with a life\u2010limiting condition in Ireland. Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross\u2010case comparison showed that for all parents utilising respite care, regardless of their child's age and condition, home was the location of choice. Many interlinking factors influencing these decisions included: past experience of in\u2010patient care, and trust and confidence in care providers. Issues were raised regarding the impact of care provision in the home on family life, siblings and the concept of home.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Respite is an essential element of children's palliative care. Utilisation of out\u2010of\u2010home respite is heavily dependent on a number of interlinked and intertwined factors. The proposed model of care offers an opportunity to identify how these decisions are made and may ultimately assist in identifying the elements of responsive and family\u2010focused respite that are important to families of children with life\u2010limiting conditions.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.12300","type":"journal-article","created":{"date-parts":[[2015,11,8]],"date-time":"2015-11-08T19:40:57Z","timestamp":1447011657000},"page":"51-59","source":"Crossref","is-referenced-by-count":23,"title":["Parental decision\u2010making on utilisation of out\u2010of\u2010home respite in children's palliative care: findings of qualitative case study research \u2010 a proposed new model"],"prefix":"10.1111","volume":"42","author":[{"given":"J.","family":"Ling","sequence":"first","affiliation":[{"name":"European Association for Palliative Care  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S.","family":"Payne","sequence":"additional","affiliation":[{"name":"International Observatory on End of Life Care Lancaster University  Lancaster UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"K.","family":"Connaire","sequence":"additional","affiliation":[{"name":"Education Department St Francis Hospice, Raheny  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M.","family":"McCarron","sequence":"additional","affiliation":[{"name":"Faculty of Health Science University of Dublin, Trinity College  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2015,11,7]]},"reference":[{"key":"e_1_2_8_2_1","volume-title":"A Guide to the Development of Children's Palliative Care Services","author":"ACT","year":"2009"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1177\/082585971202800402"},{"key":"e_1_2_8_4_1","first-page":"109","article-title":"IMPaCCT: standards of paediatric palliative care in Europe","volume":"14","author":"Craig F.","year":"2008","journal-title":"European Journal of Palliative Care"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/082585970402000403"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2008.02630.x"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2010.16.10.79216"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2005.00571.x"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2005.03.005"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732307308305"},{"key":"e_1_2_8_11_1","volume-title":"Oxford textbook of Palliative Care for Children","author":"Johnson A.","year":"2012"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1080\/01460860290042530"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0020-7489(01)00069-4"},{"key":"e_1_2_8_14_1","unstructured":"Ling J.(2013)An exploration of the respite needs and experiences of parents caring for a child with a life\u2010limiting condition requiring palliative care. 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