Dataset Information

Experiences of persons with multiple sclerosis with rehabilitation-a qualitative interview study.

ABSTRACT:

Background

Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients' experiences and perspectives on inpatient rehabilitation in MS.

Methods

We conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing-remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically.

Results

As a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians' attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management.

Conclusion

Patients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant.

SUBMITTER: Ghaidar D

PROVIDER: S-EPMC9188711 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature

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Publications

Experiences of persons with multiple sclerosis with rehabilitation-a qualitative interview study.

Ghaidar Donya D Sippel Anna A Riemann-Lorenz Karin K Kofahl Christopher C Morrison Rebecca R Kleiter Ingo I Schmidt Stephan S Dettmers Christian C Schulz Holger H Heesen Christoph C

BMC health services research 20220611 1

<h4>Background</h4>Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients' experiences and perspectives on inpatient rehabilitation in MS.<h4>Methods</h4>We conducted problem-centered interviews in 50 persons with MS in Germany, of who ...[more]

PMID: 35690766

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Project description:Rationale: People living with both chronic obstructive pulmonary disease (COPD) and frailty have high potential to benefit from pulmonary rehabilitation but face challenges completing programs. However, research to understand ways to optimize participation in this group is lacking.Objectives: To explore the experiences, needs, and preferences of people with COPD and frailty referred for outpatient pulmonary rehabilitation.Methods: Semistructured interviews with people with COPD and physical frailty, purposively sampled by age, living status, level of frailty, and completion of pulmonary rehabilitation. Thematic analysis with a critical realist perspective was used, involving relevant stakeholders with clinical, academic, and lived experience for interpretive rigor.Results: Nineteen people with COPD and frailty were interviewed, with a median age of 78 years (range, 58-88). Nine did not complete their pulmonary rehabilitation program. Four themes were identified: striving to adapt to multidimensional loss, tensions of balancing support with independence, pulmonary rehabilitation as a challenge worth facing, and overcoming unpredictable disruptions to participation. Participants described constantly adapting to their changing health and resulting multidimensional losses (e.g., functional abilities, relationships, confidence). This involved traversing between independence and seeking support, set against a mismatch between their needs and what support is available. People with COPD and frailty can be highly motivated to participate in pulmonary rehabilitation, despite the physical and mental demands it entails, and report a range of benefits. Yet in the context of changeable health, they must often overcome multiple unpredictable disruptions to completing rehabilitation programs. Participant determination and flexibility of services can facilitate ongoing attendance, but for some, these unpredictable disruptions erode their motivation to attend.Conclusions: People with COPD and frailty experience accumulating, multidimensional loss. This group are motivated to complete pulmonary rehabilitation but often require additional support and flexibility owing to fluctuating and unpredictable health. Person-centered approaches should be considered to minimize disruptive health events and support pulmonary rehabilitation participation and completion. Service adaptations could allow more flexibility to meet the changing needs of this group and enable communication around how pulmonary rehabilitation might align with their priorities.

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Dataset Information

Experiences of persons with multiple sclerosis with rehabilitation-a qualitative interview study.

Background

Methods

Results

Conclusion

Publications

Experiences of persons with multiple sclerosis with rehabilitation-a qualitative interview study.

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