End-of-life Decision-making For Children With Severe Developmental Disabilities: The Parental Perspective.

Title

End-of-life Decision-making For Children With Severe Developmental Disabilities: The Parental Perspective.

Creator

Zaal-Schuller IH; de Vos MA; Ewals FV; van Goudoever JB; Willems DL

Identifier

DOI: 10.1016/j.ridd.2015.12.006

Publisher

Research In Developmental Disabilities

Date

2016

Subject

Decision Making; Developmental-disabilities; Humans; Parents; Quality Of Life; Severity Of Illness Index; Terminal Care
Critical Treatment Decision; Decision-making; End Of Life; Integrative Review; Parents; Quality Of Life; Severe Developmental Disorder; To Advocate

Description

BACKGROUND AND AIMS:
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions.
METHODS AND PROCEDURES:
We searched MEDLINE, EMBASE, CINAHL and PsycINFO. The search was limited to articles in English or Dutch published between January 2004 and August 2014. We included qualitative and quantitative original studies that directly investigated the experiences of parents of children aged 0-18 years with severe developmental disorders for whom an end-of-life decision had been considered or made.
OUTCOMES AND RESULTS:
We identified nine studies that met all inclusion criteria. Reportedly, parental involvement in end-of-life decision-making varied widely, ranging from having no involvement to being the sole decision-maker. Most parents preferred to actively share in the decision-making process regardless of their child's specific diagnosis or comorbidity. The main factors that influenced parents in their decision-making were: their strong urge to advocate for their child's best interests and to make the best (possible) decision. In addition, parents felt influenced by their child's visible suffering, remaining quality of life and the will they perceived in their child to survive.
CONCLUSIONS AND IMPLICATIONS:
Most parents of children with severe developmental disorders wish to actively share in the end-of-life decision-making process. An important emerging factor in this process is the parents' feeling that they have to stand up for their child's interests in conversations with the medical team.

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

October 2016 List

Citation

Zaal-Schuller IH; de Vos MA; Ewals FV; van Goudoever JB; Willems DL, “End-of-life Decision-making For Children With Severe Developmental Disabilities: The Parental Perspective.,” Pediatric Palliative Care Library, accessed May 28, 2022, https://pedpalascnetlibrary.omeka.net/items/show/10650.

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