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Motives for becoming and remaining member of patient associations: a study of 1,810 Swedish individuals with cancer associations

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Abstract

Patient associations for cancer patients (PACPs) are increasing in number as well as in the number of members. We utilised a questionnaire to investigate how members of 13 PACPs motivated their memberships. The study included 1,810 individuals who had been treated for breast cancer, gynaecological cancer, or prostate cancer. Through questionnaires these individuals were asked to articulate why they became and chose to remain members. Descriptive statistics and content analyses were used to analyse the open and structured questions. Motives for membership reflected both benefits for the individuals and the welfare of others; themes such as ‘needs related to having cancer’ (reported by 33% as motives for becoming members; 14% for remaining members), ‘wanted to use the PACP’s information and activities’ (24%; 38%) and ‘wanted to support the PACP and its possibilities to have an impact’ (9%; 20%) were dominant. The theme ‘needs and experiences related to having cancer’ was more common among members with breast cancer (38%) and ovarian cancer (36%) than among members with prostate cancer (25%), whereas 53% of men with prostate cancer reported ‘wanted to use the PACP’s information and activities’ compared to 19–9% among female members. The motives showed that needs related to having cancer and that activities and information offered by the PACPs were important to the members, as were their beliefs that the PACP prompted issues that were important to the members.

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Acknowledgements

We would like to thank the members of the participating PACPs for willingly sharing their experiences. The Mrs. Berta Kamprad Cancer Foundation and the Scientific Board of the County Council of Halland provided financial support for the study. We would especially like to thank and honour Professor Ullabeth Sätterlund Larsson who recently died from cancer.

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Authors and Affiliations

  1. Institute of Clinical Sciences, Department of Oncology, Lund University, 221 85, Lund, Sweden

    Christina Carlsson & Dick Killander

  2. Department of Research and Development, County Hospital, 301 85, Halmstad, Sweden

    Christina Carlsson

  3. Research and Development Unit, Primary Health Care, Halland P.O. Box 113, 311 22, Falkenberg, Sweden

    Amir Baigi

  4. Institute of Health Care Pedagogics, Sahlgrenska Academy at Gothenburg University, 405 30, Göteborg, Sweden

    Ullabeth Sätterlund Larsson

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  1. Christina Carlsson
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  2. Amir Baigi
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  3. Dick Killander
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  4. Ullabeth Sätterlund Larsson
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Correspondence to Christina Carlsson.

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Carlsson, C., Baigi, A., Killander, D. et al. Motives for becoming and remaining member of patient associations: a study of 1,810 Swedish individuals with cancer associations. Support Care Cancer 13, 1035–1043 (2005). https://doi.org/10.1007/s00520-004-0735-x

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  • DOI: https://doi.org/10.1007/s00520-004-0735-x

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