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  • Respite Paper - 24 June 2015 CHCD

    Rights statement: This is the peer reviewed version of the following article: Ling, J., Payne, S., Connaire, K., and McCarron, M. (2016) 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. Child: Care, Health and Development, 42: 51–59. doi: 10.1111/cch.12300 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/cch.12300/abstract This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.

    Accepted author manuscript, 170 KB, PDF document

    Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License

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    Accepted author manuscript, 177 KB, PDF document

    Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License

  • Figure 2 - CHC&D

    Rights statement: This is the peer reviewed version of the following article: Ling, J., Payne, S., Connaire, K., and McCarron, M. (2016) 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. Child: Care, Health and Development, 42: 51–59. doi: 10.1111/cch.12300 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/cch.12300/abstract This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.

    Accepted author manuscript, 120 KB, PDF document

    Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License

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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

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<mark>Journal publication date</mark>01/2016
<mark>Journal</mark>Child: Care, Health and Development
Issue number1
Volume42
Number of pages9
Pages (from-to)51-59
Publication StatusPublished
Early online date7/11/15
<mark>Original language</mark>English

Abstract

Summary
Background
Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home 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-of-home respite has been developed based on the findings of qualitative case study research.

Methods
Utilising multiple, longitudinal, qualitative case study design, the respite needs and experiences of parents caring for a child with a life-limiting condition were explored. Multiple, in-depth interviews were undertaken with the parents identified by a hospital-based children's palliative care team. Data were analysed using thematic analysis. Each individual case consists of a whole study. Cross-case comparison was also conducted.

Results
Nine families were recruited and followed for two years. A total of 19 in-depth interviews were conducted with mothers and fathers (one or both) caring for a child with a life-limiting condition in Ireland. Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross-case 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-patient 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.

Conclusion
Respite is an essential element of children's palliative care. Utilisation of out-of-home 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-focused respite that are important to families of children with life-limiting conditions.

Bibliographic note

This is the peer reviewed version of the following article: Ling, J., Payne, S., Connaire, K., and McCarron, M. (2016) 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. Child: Care, Health and Development, 42: 51–59. doi: 10.1111/cch.12300 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/cch.12300/abstract This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.