Managing oneself or managing together? Parents' perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

Ruud Wong Chung, Agnes Willemen, Jeanine Voorman, Marjolijn Ketelaar, Jules Becher, Johannes Verheijden, Carlo Schuengel

Research output: Contribution to JournalArticleAcademicpeer-review

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 rehabilitation To 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.

Original languageEnglish
Pages (from-to)1-11
Number of pages11
JournalDisability and Rehabilitation
DOIs
Publication statusE-pub ahead of print - 11 Apr 2019

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Self Care
Rehabilitation
Parents
Pediatrics
Motivation
Interviews
Child Care
Mental Competency
Analysis of Variance
Cross-Sectional Studies
Communication

VU Research Profile

  • Human Health and Life Sciences

Cite this

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title = "Managing oneself or managing together?: Parents' perspectives on chronic condition self-management in Dutch pediatric rehabilitation services",
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 rehabilitation To 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.",
author = "{Wong Chung}, Ruud and Agnes Willemen and Jeanine Voorman and Marjolijn Ketelaar and Jules Becher and Johannes Verheijden and Carlo Schuengel",
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Managing oneself or managing together? Parents' perspectives on chronic condition self-management in Dutch pediatric rehabilitation services. / Wong Chung, Ruud; Willemen, Agnes; Voorman, Jeanine; Ketelaar, Marjolijn; Becher, Jules; Verheijden, Johannes; Schuengel, Carlo.

In: Disability and Rehabilitation, 11.04.2019, p. 1-11.

Research output: Contribution to JournalArticleAcademicpeer-review

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T2 - Parents' perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

AU - Wong Chung, Ruud

AU - Willemen, Agnes

AU - Voorman, Jeanine

AU - Ketelaar, Marjolijn

AU - Becher, Jules

AU - Verheijden, Johannes

AU - Schuengel, Carlo

PY - 2019/4/11

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N2 - 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 rehabilitation To 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.

AB - 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 rehabilitation To 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.

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JF - Disability and Rehabilitation

SN - 0963-8288

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