Chapitre 58. Éducation thérapeutique et polyhandicap

Camberlein, Philippe; Jaubert-Brisse, Catherine

doi:10.3917/dunod.colle.2021.01.1027

Cited by 1 publication

(5 citation statements)

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“…Themes 2 and 3 underscored the value of adding to these programs information about human, technical/material and financial support systems as well as places and types of care in the French system. In an institutionalized context such as France, the living and care settings of persons with PIMD necessarily guide the form and feasibility of implementing such programs 37 . They must be made accessible in form (e.g., location, price, language) and in content to parents who desire them regardless of where their child lives and how they are cared for.…”

Section: Discussionmentioning

confidence: 99%

“…The relevance of therapeutic education among informal caregivers was stressed by the main French association of parents of persons with PIMD 36 . However, these programs are still underdeveloped in France and focus mainly on care practices, emergency management and curative and preventive actions 37 . Themes 2 and 3 underscored the value of adding to these programs information about human, technical/material and financial support systems as well as places and types of care in the French system.…”

Section: Discussionmentioning

confidence: 99%

“…Echoing the parenting work of opening up possibilities (theme 5), it seems imperative to recognize the potential of people with PIMD by formalizing adapted therapeutic education programs. 36,37 Data on the parenting work of medical and medicosocial care management (i.e., theme 3) provided further evidence of parental expectations in the practitioner-parent relationship. In a context where parents do not feel heard by practitioners 5 despite their expertise, 3 interactions with professionals unfamiliar with PIMD during the care trajectory lead parents to adopt, when given the opportunity, the additional parenting work of training these professionals to ensure that their child's needs are met.…”

Section: Themes Identifiedmentioning

confidence: 99%

“…36 However, these programs are still underdeveloped in France and focus mainly on care practices, emergency management and curative and preventive actions. 37 Themes 2 and 3 underscored the value of adding to these programs information about human, technical/ material and financial support systems as well as places and types of care in the French system. In an institutionalized context such as…”

Section: Themes Identifiedmentioning

confidence: 99%

“…France, the living and care settings of persons with PIMD necessarily guide the form and feasibility of implementing such programs. 37 They must be made accessible in form (e.g., location, price, language) and in content to parents who desire them regardless of where their child lives and how they are cared for. Echoing the parenting work of opening up possibilities (theme 5), it seems imperative to recognize the potential of people with PIMD by formalizing adapted therapeutic education programs.…”

Section: Themes Identifiedmentioning

confidence: 99%

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Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study

Aim,

Rousseau,

Hamouda

et al. 2023

Health Expectations

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IntroductionParents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo‐Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France.ObjectiveWe explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the ‘parenting work’) in the French context.MethodQualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8–35. The resulting data were analyzed using thematic analysis.ResultsThe analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities.ConclusionThis study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know‐how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion.Patient or Public ContributionOne of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and manuscript.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%