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Managing oneself or managing together? Parents' perspectives on chronic condition self-management in Dutch pediatric rehabilitation services.
- Source :
-
Disability and rehabilitation [Disabil Rehabil] 2020 Nov; Vol. 42 (23), pp. 3348-3358. Date of Electronic Publication: 2019 Apr 11. - Publication Year :
- 2020
-
Abstract
- Purpose: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions. Materials and methods: Using a mixed-methods strategy, first variations in self-management behaviors, motivation and perceived autonomy support were assessed with a cross-sectional survey among parents of children with chronic conditions ( N = 239). Statistical analysis involved descriptive statistics and univariate analysis of variance. The survey was followed by 18 in-depth interviews with parents. Thematic analysis was used to recognize relevant topics in the qualitative data. Results: In the survey most parents reported being active self-managers. Nevertheless, only one third persisted in self-management when under stress. Autonomous motivation was strongly associated with parental self-management. In the interviews, parents mentioned attuning with professionals and finding balance as important aspects of self-management. To facilitate self-management, professionals were expected to have expert knowledge, be engaged and empathic. Conclusion: From the perspective of parents, self-management should be viewed as a collaborative effort in which they are supported by professionals, rather than having to manage it "by themselves".Implications for rehabilitationTo facilitate self-management, parents expect professionals to have expert knowledge and additionally show interpersonal competences as openness, engagement and empathy.Motivating parents may facilitate their level of self-management regarding the care for their child with a chronic disorder.Good communication and collaboration with professionals appear to be key aspects of parental self-management.Parents expect pediatric rehabilitation teams to tune their services to the needs, desires and expectations of parents to support them in "self-managing" the care for their child.
Details
- Language :
- English
- ISSN :
- 1464-5165
- Volume :
- 42
- Issue :
- 23
- Database :
- MEDLINE
- Journal :
- Disability and rehabilitation
- Publication Type :
- Academic Journal
- Accession number :
- 30974978
- Full Text :
- https://doi.org/10.1080/09638288.2019.1594396