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Participation of adults with cognitive, physical, or psychiatric impairments in family of origin and intimate relationships: a grounded theory study.

ABSTRACT: BACKGROUND:How adults with disabilities perceive participation has received little attention. Our purpose was to formulate a grounded theory on participation, based on the subjective experience of adults with cognitive, physical, or psychiatric impairment(s), and to identify barriers, facilitators, and support needs concerning participation in different areas of life. We aimed to explore whether the United Nations' Convention on the Rights of Persons with Disabilities (CRPD), ratified by Switzerland in 2014, and its principles are being met. Here we report on the main category and focus on the participation areas 'family of origin' and 'intimate relationships.' METHODS:In a qualitative, grounded theory study, we conducted problem-centered interviews with 23 adults with cognitive, physical, or psychiatric impairments (30-53?years; 11 men, 12 women), with different housing (on their own, assisted living, with parents) and work situations (primary vs. secondary labor market) in nine German-speaking Swiss cantons. RESULTS:Participation can be understood as a continuum that extends on a horizontal level (from participation is restricted to participation takes place) and a vertical level (separative setting vs. inclusive setting). In separative as well as in inclusive settings, diverse levels of participation are possible. Many participants were stuck in an 'in-between' area between separative and inclusion-oriented settings. In the family of origin, there was a thin line between fulfilling relations that enhance participation and conflictual relations and overprotective parenting that limit participation. In intimate relationships, opportunities for participation were limited overall. Many interviewees were single. Social environment and family of origin (e.g., parents) can enable and facilitate intimate relationships and sexual contacts but can also be an important barrier. CONCLUSIONS:Participation can be understood as a continuum. Participation restrictions exist in separative as well as in inclusive-oriented settings, also in the areas of family of origin and intimate relationships. Participation barriers must be torn down in separative as well as in inclusion-oriented settings. Trajectories to inclusive settings should be facilitated. Families with children with impairment(s) should be supported from early on to create the best possible participation possibilities for the (adult) person with impairment(s) and to support the family of origin itself.

SUBMITTER: Pfister A

PROVIDER: S-EPMC7206802 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Participation of adults with cognitive, physical, or psychiatric impairments in family of origin and intimate relationships: a grounded theory study.

Pfister Andreas A Georgi-Tscherry Pia P Berger Fabian F Studer Michaela M

BMC public health 20200507 1

<h4>Background</h4>How adults with disabilities perceive participation has received little attention. Our purpose was to formulate a grounded theory on participation, based on the subjective experience of adults with cognitive, physical, or psychiatric impairment(s), and to identify barriers, facilitators, and support needs concerning participation in different areas of life. We aimed to explore whether the United Nations' Convention on the Rights of Persons with Disabilities (CRPD), ratified by ...[more]

PMID: 32380993

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Project description:IntroductionThe participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research.MethodsWe used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs. Purposeful sampling followed by theoretical sampling were used to attempt saturation of the core category. Data were collected using semi-structured open-ended questions. Interviews were recorded, transcribed verbatim and checked prior to analysis. Open line-by-line coding followed by focus coding were used to arrive at a substantive theory. Memoing was used to help bring concepts to higher abstract levels.ResultsThe GPs' decision to participate in research was attributed to their inner drive and appreciation for primary care research and their confidence in managing their social and research environments. The drive and appreciation for research motivated the GPs to undergo research training to enhance their research knowledge, skills and confidence. However, the critical step in the GPs' decision to participate in research was their ability to align their research agenda with priorities in their social environment, which included personal life goals, clinical practice and organisational culture. Perceived support for research, such as funding and technical expertise, facilitated the GPs' participation in research. In addition, prior experiences participating in research also influenced the GPs' confidence in taking part in future research.ConclusionsThe key to GPs deciding to participate in research is whether the research agenda aligns with the priorities in their social environment. Therefore, research training is important, but should be included in further measures and should comply with GPs' social environments and research support.

Dataset Information

Participation of adults with cognitive, physical, or psychiatric impairments in family of origin and intimate relationships: a grounded theory study.

Publications

Participation of adults with cognitive, physical, or psychiatric impairments in family of origin and intimate relationships: a grounded theory study.

Similar Datasets

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