https://orcid.org/0000-0003-0941-9310
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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.
Acknowledgements
The authors are thankful to all parents who participated in this study. Thank you for sharing your personal stories with us. The authors thank Wendy van der Geugten and Martijn Simons for providing feedback on earlier versions of this research article. The authors are grateful for the detailed and constructive comments of the anonymous reviewers.
Disclosure statement
No potential conflict of interest was reported by the author(s).