Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes

Title

Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes

Creator

Collins A; Burchell J; Remedios C; Thomas K

Publisher

Palliative Medicine

Date

2020

Subject

caregiver; paediatrics; Palliative care; psychological; quality of life; stress; terminally ill

Description

BACKGROUND: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. AIM: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. DESIGN: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. SETTING/PARTICIPANTS: Parents currently caring for one or more children (18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). RESULTS: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = -.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support. CONCLUSIONS: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.

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

April 2020 List

Collection

Citation

Collins A; Burchell J; Remedios C; Thomas K, “Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes,” Pediatric Palliative Care Library, accessed July 4, 2022, https://pedpalascnetlibrary.omeka.net/items/show/17019.

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