Experiences of families in which a child has a prolonged terminal illness: modifying factors.

Title

Experiences of families in which a child has a prolonged terminal illness: modifying factors.

Creator

Steele R

Publisher

International Journal Of Palliative Nursing

Date

2002

Subject

Child; Female; Humans; Male; Family; Communication; Longitudinal Studies; Non-U.S. Gov't; Research Support; Parents/psychology; Terminal Care/psychology; Neurodegenerative Diseases/nursing

Description

A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining families' experiences when a child with an NLTI is dying at home. In this grounded theory study, data were collected from eight families through observations and audiotaped interviews. Families moved through a process of 'navigating uncharted territory' as they lived with their dying child. The strategies that families used to manage this phenomenon were influenced by four intervening conditions that reflected the broader structural context of the phenomenon; relationships with healthcare providers, availability of information, gender differences, and communication between parents. Each condition facilitated or constrained the strategies that families were able to use. Implications for research, education and practice are discussed.
2002

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).

Type

Journal Article

Citation List Month

Backlog

Pages

418-434

Issue

9

Volume

8

Citation

Steele R, “Experiences of families in which a child has a prolonged terminal illness: modifying factors.,” Pediatric Palliative Care Library, accessed July 24, 2021, https://pedpalascnetlibrary.omeka.net/items/show/12675.

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