Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease: An Integrative Review of the Literature

Title

Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease: An Integrative Review of the Literature

Creator

Battista V; Baker DJ; Trimarchi T; Sabri B; D'Aoust RF; Wright R

Publisher

Journal of Hospice and Palliative Nursing

Date

2021

Subject

adolescents and young adults; advance directives; goals of care; neuromuscular disease; palliative care

Description

The use of advance directives is an important component in helping individuals living with chronic and/or life-threatening illnesses establish goals of care and make decisions regarding care at the end of life. Advance care planning may help achieve enhanced health outcomes, yet it is not routinely offered to adolescents/young adults living with neuromuscular disease. An integrative review of the literature was conducted to examine the evidence related to the use of advance directives with adolescents/young adults living with neuromuscular disease and to identify reasons why they are not being used and how this can be improved. Three-hundred-seven studies were retrieved from PubMed, CINAHL, and EMBASE. Five studies met the final inclusion search criteria and were included in the analysis. Four themes emerged from the literature: conversations about advance directives with adolescents/young adults with neuromuscular disease are not being conducted, only a small number of patients have documented advance directives, patients want to have conversations about goals of care and want to have them sooner, and there is a lack of evidence in this area. These findings may influence neuromuscular clinicians' practice surrounding the use of advance directives and increase their knowledge regarding the need for discussions regarding goals of care. Copyright © 2021 by The Hospice and Palliative Nurses Association.

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 2021 List

Collection

Citation

Battista V; Baker DJ; Trimarchi T; Sabri B; D'Aoust RF; Wright R, “Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease: An Integrative Review of the Literature,” Pediatric Palliative Care Library, accessed December 8, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17682.

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