"Continuously Struggling for Balance": The Lived Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities

Autor/inn/en	Geuze, Liesbeth; Goossensen, Anne; Schrevel, Samuel
Titel	"Continuously Struggling for Balance": The Lived Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities
Quelle	In: Journal of Intellectual & Developmental Disability, 48 (2023) 2, S.161-171 (11 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Geuze, Liesbeth) ORCID (Schrevel, Samuel)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1366-8250
DOI	10.3109/13668250.2022.2073707
Schlagwörter	Foreign Countries; Children; Parent Attitudes; Child Rearing; Severe Intellectual Disability; Multiple Disabilities; Barriers; Health Needs; Chronic Illness; Fatigue (Biology); Siblings; Interpersonal Relationship; Access to Health Care; Costs; Family Needs; Administrative Organization; Netherlands + Suchen Sie Ihr Suchwort? Ausland; Child; Kind; Kinder; Elternverhalten; Kindererziehung; Multiple disability; Mehrfachbehinderung; Chronic disease; Chronische Krankheit; Fatigue; Ermüdung; Sibling; Geschwister; Interpersonal relation; Interpersonal relations; Interpersonelle Beziehung; Zwischenmenschliche Beziehung; Cost; Kosten; Niederlande
Abstract	Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon "parenting a child with PIMD." Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. Findings: The essential meaning of the phenomenon was understood as "continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time." The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents' challenges offers them the possibility to participate in society. Healthcare professionals should address the parents' perspectives related to the child's quality of life. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01