Challenges and support service preferences of informal caregivers of people with systemic sclerosis: a cross-sectional survey

Author:

Rice Danielle B.12,Cañedo-Ayala Mara1,Carboni-Jiménez Andrea1,Carrier Marie-Eve1,Cumin Julie1,Malcarne Vanessa L.34,Hagedoorn Mariët5,Thombs Brett D.12678,

Affiliation:

1. Lady Davis Institute, Jewish General Hospital, Montreal, QC, Canada;

2. Department of Psychology, McGill University, Montreal, QC, Canada;

3. Department of Psychology, San Diego State University, San Diego, CA, USA;

4. San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego, CA, USA;

5. University Medical Center Groningen, University of Groningen, Groningen, The Netherlands;

6. Department of Psychiatry, McGill University, Montreal, QC, Canada;

7. Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada;

8. Department of Medicine, McGill University, Montreal, QC, Canada;

Funder

Rare Disease Foundation and the BC Children’s Hospital Foundation

Publisher

Informa UK Limited

Subject

Rehabilitation

Reference20 articles.

1. Scleroderma: from cell and molecular mechanisms to disease models

2. Prevalence, incidence, survival, and disease characteristics of systemic sclerosis in a large US population

3. My Approach to the Treatment of Scleroderma

4. The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions

5. Shire Report. Rare disease impact report: insights from patients and the medical community Global Genes Organization (US); 2013. Available from: https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf

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