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Participation in society for people with a rare diagnosis · Study

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ArticleParticipation in society for people with a rare diagnosis

Gunilla Jaeger2014

Article2014

Participation in society for people with a rare diagnosis

Gunilla Jaeger · AnnCatrin Röjvik · Britta Berglund

56 citations·0/0 files stored·Disability and health journal

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Disability Rights and Representation Medical Practices and Rehabilitation Inclusion and Disability in Education and Sport

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References

2003Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness 2008Why rare diseases are an important medical and social issue 1998Focus Groups in Health Research 2013Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support 2006Stress and well‐being among parents of children with rare diseases: a prospective intervention study 2006The knowledge-value chain: a conceptual framework for knowledge translation in health

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2021An inductive qualitative content analysis of stigma experienced by people with rare diseases 2019The Role of the Government in Increasing Community Welfare in Pohuwato Regency 2018The Importance of Social Work in the Latin American Association Movement of People Affected by Low Prevalence Diseases

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2018Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare Systemarticle · 3 shared references 2016The supportive care needs of parents with a child with a rare disease: results of an online surveyarticle · 3 shared references 2019The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptionsarticle · 2 shared references 2021Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Lifereview · 2 shared references 2015The Supportive Care Needs of Parents With a Child With a Rare Disease: A Qualitative Descriptive Studyarticle · 2 shared references 2023Living with a rare disease - experiences and needs in pediatric patients and their parentsarticle · 2 shared references

Details

Year2014

Typearticle

Published2014-07-25

VenueDisability and health journal

ISSN-L1876-7583

Languageen

Citations56

Files0 public / 0

ShelfDisability Rights and Representation

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doi10.1016/j.dhjo.2014.07.004

openalex_workW2018279802

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