"Continuously struggling for balance": The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities.
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| Title: | "Continuously struggling for balance": The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities. |
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| Authors: | Geuze, Liesbeth, Goossensen, Anne, Schrevel, Samuel |
| Source: | Journal of Intellectual & Developmental Disability. Jun2023, Vol. 48 Issue 2, p161-171. 11p. 1 Chart. |
| Subjects: | Health services accessibility, Parents of children with disabilities, Postural balance, Interviewing, Uncertainty, Experience, Parenting, Multiple human abnormalities, Qualitative research, Phenomenology, Psychosocial factors, Disabilities, Interpersonal relations, Assistive technology, Quality of life, Research funding, Parent-child relationships, Economic aspects of diseases, Intellectual disabilities |
| Geographic Terms: | Netherlands |
| Abstract: | Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon "parenting a child with PIMD." We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. 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. 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. [ABSTRACT FROM AUTHOR] |
| Copyright of Journal of Intellectual & Developmental Disability is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Psychology and Behavioral Sciences Collection |
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