Shared concern with current breast cancer rehabilitation services: a focus group study of survivors’ and professionals’ experiences and preferences for rehabilitation care delivery

Abstract

ObjectivesBreast cancer survivors experience a wide spectrum of physical sequelae from cancer treatment. National and international guidelines recommend that rehabilitation is offered from the point of diagnosis. However, there is a lack of data on the translation of these recommendations into clinical care. The objective of this study was to explore the experiences of breast cancer survivors, rehabilitation professionals and breast surgeons on current rehabilitation services including preferences for care delivery, specific ways to promote early detection and timely management of upper body issues and attitudes towards self-managed surveillance and rehabilitation.DesignQualitative focus groups. Breast cancer survivors completed a questionnaire about rehabilitation services received and experience of upper body issues. These quantitative data were collected to provide context for the qualitative data and increase transferability. Transcripts were analysed using content analysis.SettingFive geographically distinct health authorities in British Columbia, Canada.ParticipantsEleven focus groups were conducted with 35 breast cancer survivors, 29 rehabilitation professionals and 5 breast surgeons.ResultsThree categories captured participants’ concern and wish for improved care: (1) cut the cancer out and goodbye; (2) you have to look out for yourself and (3) in a perfect world. All breast cancer survivors reported chronic upper body issues (mean 4.5 unique issues). Breast cancer survivors expressed worry and uncertainty in their solo management of the rehabilitation. The current services were reported to not enable early detection and timely management. Suggestions included reorganising the timing of patient education and improving the quality of and access to rehabilitation services by elevating the knowledge among healthcare professionals and providing multimodal self-management resources.ConclusionsThe results revealed a gap between oncology guidelines and the current clinical reality. The rehabilitation services were reported in need of revamping to increase equity of care. Multiple upper body issues were reported by many breast cancer survivors.

A Qualitative Study of Rehabilitation Professionals' Practices to Define the Presence of Arm Morbidity After Breast Cancer Surgery

“…Five focus group interviews were conducted with RPs in meeting rooms of hospitals: one in each of the 5 geographically distinct health authorities located in British Columbia, Canada. Results of other elements of the focus groups have been previously reported 17. Snowball sampling was used to target physiotherapists working within hospital oncology units and invite them to inform other relevant colleagues who provide clinical services for women who had undergone surgery for breast cancer in their geographical region.…”

“…The focus group interviews were audio-and videorecorded, transcribed verbatim, and de-identified. 17 Raw transcript data were examined using conventional content analysis. 18 As preparation, 5 investigators BAF, ANE, AW, KAJ, and CD independently read the transcripts to get an overall preliminary sense of data and meaning.…”

“…Focus group interviews were conducted by one of the study team BSR between September and December 2017. 17 Open-ended questions were developed by the same team member BSR and were relating to experiences and beliefs about the delivery of rehabilitation after breast cancer surgery in the provincial public health care system (see Supplemental Digital Content File 1, available at: http://links.lww.com/REHABONC/A60). 17 Two patient representatives and 1 health care representative were involved in developing the interview guide, by providing feedback on the wording and relevance of questions.…”

Psychosocial experiences of breast cancer survivors: a meta-review

“…Survivors noted a need for information about the reality of survivorship and disease management, especially about ongoing side-effects [Reviews: [22,28,30,31,34,36,37]; Papers: [60,87,95,[98][99][100]109]].…”

Rehabilitation: collective construction of a concept in a focus group

“…1,2 Rehabilitation requires person-centred assistance and a more comprehensive design, with actions aimed at rebuilding the quality of life and functional independence of the individual, minimising subsequent disabilities. 3,4 On the other hand, ideas that reinforce fragments, especially ones that privilege unilateral specialised practices, may not reach the global purpose of human wholeness.…”