A joint venture: patients' experiences with goal setting in rheumatology rehabilitation - a qualitative study

Purpose: To explore how patients with rheumatic musculoskeletal diseases (RMDs) perceive participation in the goal setting process prior to interdisciplinary rehabilitation. Methods: We conducted semi-structured interviews with 22 participants admitted to an interdisciplinary rehabilitation stay for patients with RMDs at two Danish rehabilitation centres. Qualitative content analysis was applied. Results: The participants perceived goal setting as a joint venture between two parties: the health professionals and the participant. Three categories were formed, which described both facilitators and barriers in the process. Responsibility for goal setting described the importance of shared responsibility, or health professionals as experts, taking full responsibility for goal setting. Equipped for goal setting included perceptions of being well prepared for the process, or considerations that goal setting was difficult because of a lack of information. An equal member of the team entailed both the feeling of being recognised as one in the team, or feeling like an outsider. Conclusion: Goal setting is perceived as a challenge by some patients. Participation in goal setting depends on both the capacity and the opportunity to participate which are factors linked to patients' level of health literacy. IMPLICATIONS FOR REHABILITATION .Patients largely perceive goal setting as a joint venture, constituting a partnership aimed at sharing decisions regarding one or more rehabilitation goals, yet, for some patients, active participation in this joint venture poses challenges. When patients perceive a shared responsibility, acquire appropriate and sufficient knowledge prior to the process and feel accepted as whole persons based on a biopsychosocial approach it facilitates goal setting. Health professionals should be aware of barriers perceived by patients, such as abdicating responsibility because they view health professionals as authority figures, feeling uncertain about the purpose of setting goals and having difficulties in receiving and applying information. Patients' health literacy as well health literacy responsiveness may be of importance to the experience of barriers to shared decisions and goal setting among patients with RMDs.