The lived experience of mothers of children with chronic feeding and/or swallowing difficulties.

Abstract:

:The purpose of this phenomenologic study was to describe the lived experiences of seven mothers who were providing home-based care for their children with feeding and/or swallowing difficulties. Data were collected using semistructured interviews and were analysed as per Colaizzi's method of inductive reduction. Results suggest that the mothers' experiences can be understood as two continuing journeys that were not mutually exclusive. The first, "Deconstruction: A journey of loss and disempowerment," comprised three essences: (1) losing the mother dream, (2) everything changes: living life on the margins, and (3) disempowered: from mother to onlooker. The second journey was "Reconstruction: Getting through the brokenness" with the essences of (4) letting go of the dream and valuing the real, (5) self-empowered: becoming the enabler, (6) facilitating the journey, and (7) the continuing journey: negotiating balance. The phenomenon of being the mother of a child with chronic feeding and/or swallowing difficulties continued to be a transformative experience in which personal growth emerged along with chronic sorrow and periodic resurgence of struggle and loss. Implications call for healthcare professionals to incorporate maternal meanings and needs in providing appropriate family-focused intervention.

journal_name

Dysphagia

journal_title

Dysphagia

authors

Hewetson R,Singh S

doi

10.1007/s00455-009-9210-7

subject

Has Abstract

pub_date

2009-09-01 00:00:00

pages

322-32

issue

3

eissn

0179-051X

issn

1432-0460

journal_volume

24

pub_type

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