Acceptance and commitment therapy meets peer-support. Development of a supportive self-care intervention for patients with rare diseases: a multistage development process.

ABSTRACT:

Objective

We aimed at developing a patient-centred self-help programme, tailored to the needs of patients with rare chronic diseases.

Design

Multistage, multimethod development process including a survey with validated self-report scales and open-ended questions (phase 1) and focus groups (phase 2) for needs assessment and, consolidating the first phases and the literature, the intervention development (phase 3).

Setting

Phase 1: nationwide online survey in Germany, phase 2: four separate and diagnostically homogeneous focus groups. The focus groups took place at a university medical centre in Germany.

Participants

Target group were patients with rare diseases that occur at a prevalence <1:2000. Phase 1: n=300 participants with different rare diseases. Phase 2:

SUBMITTER: Depping MK 

PROVIDER: S-EPMC8256734 | biostudies-literature | 2021 Jul

REPOSITORIES: biostudies-literature