Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease

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This paper describes the development and qualitative evaluation of Connect-ROD, a manualized 10-week online group intervention for adults with rare or orphan diseases. Anchored in acceptance and commitment therapy, the program aims to improve coping mechanisms, sense of control, and social connectedness through structured sessions and homework. The study reports on acceptability, feasibility, and short-term outcomes from a pilot test involving 14 participants across two groups.

ID
97cae888b4174d5e
Source org
PubMed Central
Author
Cécile Bardon (Université du Québec à Montréal), Marie‐Ève Rioux (Université du Québec à Montréal), Mélina Rivard (Université du Québec à Montréal), Floryana-Maria Viquez Porras (Université du Québec à Montréal), Julie Zaky (Université du Québec à Montréal)
Published
2024-07-04
OA status
gold
DOI
10.1186/s13023-024-03252-4
PMID
Not recorded
PMCID
Not recorded
Citations
1

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BibTeX

@article{allodium:97cae888b4174d5e,
  title = {Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease},
  author = {Cécile Bardon and Marie‐Ève Rioux and Mélina Rivard and Floryana-Maria Viquez Porras and Julie Zaky},
  year = {2024},
  journal = {PubMed Central},
  doi = {10.1186/s13023-024-03252-4},
  url = {https://doi.org/10.1186/s13023-024-03252-4}
}

RIS

TY  - JOUR
TI  - Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease
AU  - Bardon, Cécile
AU  - Rioux, Marie‐Ève
AU  - Rivard, Mélina
AU  - Porras, Floryana-Maria Viquez
AU  - Zaky, Julie
PY  - 2024
PB  - PubMed Central
DO  - 10.1186/s13023-024-03252-4
UR  - https://doi.org/10.1186/s13023-024-03252-4
ER  -

APA

Bardon, C., Rioux, M., Rivard, M., Porras, F. V., & Zaky, J. (2024). Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease. PubMed Central. https://doi.org/10.1186/s13023-024-03252-4

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