Engagement of Persons With Scleroderma and Stakeholders to Revise a Self-Management Program

PURPOSE: To engage people with systemic sclerosis (SSc) and stakeholders in focus groups to assess whether an Internet self-management program (Taking Charge of Systemic Sclerosis) has the information needed to manage and cope with the disease.

RATIONALE: Scleroderma, or SSc, is a rare, chronic connective tissue disease that affects the skin, vasculature, and internal organs. Joint contractures, finger ulcers, cold intolerance, and fatigue make it difficult to perform daily occupations. The Patient-centered Outcome Research Institute states that patient and stakeholder engagement in research teams is crucial for research directly affecting patient health and care. For a rare disease, involvement of people with SSc is vital to understanding whether an existing program meets their needs.

DESIGN: Qualitative focus group study

PARTICIPANTS: A purposive sampling of 30 people with SSc participated in six focus groups. The sample was chosen to represent different groups of people with SSc. Participants were 63% women, 70% White, 23.3% African-American, the mean age was 48.8 yr, mean disease duration was 11.4 yr, and the mean education level was 15.8 yr.

METHOD: Two focus groups with men were conducted via telephone because there were not enough men at a single location to convene a group. The other four were face-to-face groups.

Before focus group meetings, participants reviewed the current version of the program. A semistructured interview guide of predetermined questions was used for each focus group with the freedom to probe beyond the discussion. Interview questions were used to elicit participants’ responses about additional content, instructional videos, resources, learning activities, worksheets, etc. that are needed. Interviews were audiorecorded and transcribed verbatim. Each focus group was 2–2.5 hr in duration

ANALYSIS: Content analysis of deidentified open transcripts occurred in two stages: (1) initial coding by the qualitative researcher to create a coding structure, using NVIVO Version 10 that conformed to the topics in the interview and/or focus group guides and (2) an iterative team process that verified and expanded the original coding into emergent themes and categories.

The principal investigator conducted an independent review of transcripts. Edits of the initial coding structure, internal audits, and member checking were conducted through one discussion

RESULTS: Dominant themes for additions to the current website were format changes and pictures, additional materials on affect and positive affirmation; disease and symptom management; self-advocacy such as asking for help and delegating housework/child care; information for use by caregivers, families, coworkers, and strangers; tracking systems; and information about local support groups.

Specific subcategories related to occupational therapy include intimacy, facial appearance changes, depression, pain and fatigue management, assistive devices, and how to get referrals to occupational therapy.

Although focus group questions concentrated primarily on additional content needed, participants were positive regarding the content, audio voice over, hand and face exercise module, and the logs, learning activities, and checklists.

DISCUSSION: Persons with SSc identified changes needed to the self-management program. Many of the suggestions are easily incorporated into the current program. Changes that were made will be discussed along with patient and stakeholder involvement in creating the revisions

IMPACT STATEMENT: Findings from this research will inform the revision of a self-management program for people with SSc that will improve health and well-being and ease in performing valued occupations.