The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

Title

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

Creator

Gill FJ; Hashem Z; Stegmann R; Aoun SM

Publisher

Palliative Medicine

Date

2020

Subject

cancer; children; health professionals; life-limiting illness; non-cancer; Paediatric palliative care; parents; support needs

Description

BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. DESIGN: A scoping review. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

December 2020 List

Collection

Citation

Gill FJ; Hashem Z; Stegmann R; Aoun SM, “The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review,” Pediatric Palliative Care Library, accessed October 22, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17282.

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