Beyond diagnosis and survivorship: findings from a mixed-methods study of a community-based cancer support service
Ilse Blignault A B G , Louise McDonnell C F , Diana Aspinall D , Robyn Yates E and Jennifer Reath CA Centre for Health Research, School of Medicine, Western Sydney University, Locked Bag 1797, Penrith, NSW 2751, Australia.
B School of Public Health and Community Medicine, UNSW Australia, Sydney, NSW 2052, Australia.
C Department of General Practice, School of Medicine, Western Sydney University, Locked Bag 1797, Penrith, NSW 2751, Australia.
D Nepean Blue Mountains PHN, Locked Bag 1797, Penrith, NSW 2751, Australia.
E Blue Mountains Cancer Help, PO Box 18, Katoomba, NSW 2780, Australia.
F Present address: Hazelbrook General Practice, 7–9 Rosedale Avenue, Hazelbrook, NSW 2779, Australia.
G Corresponding author. Email: i.blignault@westernsydney.edu.au
Australian Journal of Primary Health 23(4) 391-396 https://doi.org/10.1071/PY16067
Submitted: 27 May 2016 Accepted: 6 February 2017 Published: 18 May 2017
Abstract
This consumer-led research investigated the client experiences and the individual and community benefits of a community-based cancer support service operating in a regional setting. The study included cross-sectional surveys, focus group discussions and key-informant interviews. In total, 114 clients, 28 carers and 20 therapists were surveyed; three client focus groups were conducted and five directors and staff were interviewed. For many clients and carers, the warm welcome experienced at first contact sets the tone for a long-term association with the organisation. The feeling of being cared for extends to the broader community and living with cancer becomes more than survivorship. Integral to the organisational model are opportunity (second-hand) shops that enable subsidised complementary therapies and other services, offer a way of giving back and assist disadvantaged community members. The organisational model has benefits, not only for people living with cancer and their families, but also for the wider community.
References
Australia Institute of Health and Welfare (2012) Cancer incidence projections: Australia, 2011 to 2020. Cancer series number 66. Catalogue number CAN 62. AIHW, Canberra, ACT, Australia.Australian Institute of Health and Welfare and Australasian Association of Cancer Registries (2012) Cancer in Australia: an overview 2012. Cancer series number 74. Catalogue number CAN 70. AIHW, Canberra, ACT, Australia.
Blignault I, McDonnell L, Aspinall D, Barron A, Thomas R, Wickens A, Yates R (2014) Evaluation of the Blue Mountains Cancer Help Model from the perspective of clients, carers and healthcare providers. (Nepean–Blue Mountains Medicare Local: Sydney, NSW, Australia) Available at http://www.nbmphn.com.au/Resources/News/Research/Evaluation-of-the-Blue-Mountains-Cancer-Help-Model.aspx [Verified 27 March 2017]
Cancer Australia and Cancer Voices Australia (2011) ‘National Framework for Consumer Involvement in Cancer Control.’ (Cancer Australia: Canberra, ACT, Australia)
Chambers SK, Hutchinson S, Clutton S, Dunn J (2014) Intervening to improve psychological outcomes after cancer: what is known and where next? Australian Psychologist 49, 96–103.
| Intervening to improve psychological outcomes after cancer: what is known and where next?Crossref | GoogleScholarGoogle Scholar |
Corboy D, McLaren S, McDonald J (2011) Predictors of support service use by rural and regional men with cancer. The Australian Journal of Rural Health 19, 185–190.
| Predictors of support service use by rural and regional men with cancer.Crossref | GoogleScholarGoogle Scholar |
Costa DSJ, Mercieca-Bebber R, Rutherford C, Gabb L, King MT (2016) The impact of cancer on psychological and social outcomes. Australian Psychologist 51, 89–99.
| The impact of cancer on psychological and social outcomes.Crossref | GoogleScholarGoogle Scholar |
Ernst E, Cassileth BR (1998) The prevalence of complementary/alternative medicine in cancer: a systematic review. Cancer 83, 777–782.
| The prevalence of complementary/alternative medicine in cancer: a systematic review.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK1cznt1KktA%3D%3D&md5=cd0586921a3b1aa089d4108daa8f25f7CAS |
Furzer BJ, Wright KE, Petterson AS, Wallman KE, Ackland TR, Joske DJL (2013) Characteristics and quality of life of patients presenting to cancer support centre: patient rated outcomes and use of complementary therapies. BMC Complementary and Alternative Medicine 13, 169
| Characteristics and quality of life of patients presenting to cancer support centre: patient rated outcomes and use of complementary therapies.Crossref | GoogleScholarGoogle Scholar |
Gifford S (1998) Analysis of non-numerical research. In ‘Handbook of Public Health Research Methods’. (Eds C Kerr, R Taylor, G Heard) pp. 543–553. (McGraw Hill: Sydney, NSW, Australia)
Greenhalgh T, Jackson C, Shaw S, Janamian T (2016) Achieving research impact through co-creation in community-based health services: literature review and case study. The Milbank Quarterly 94, 392–429.
| Achieving research impact through co-creation in community-based health services: literature review and case study.Crossref | GoogleScholarGoogle Scholar |
Harrington JE, Baker BS, Hoffman CJ (2012) Effects of an integrated support program on the concerns and wellbeing of women with breast cancer: a national service evaluation. Complementary Therapies in Clinical Practice 18, 10–15.
| Effects of an integrated support program on the concerns and wellbeing of women with breast cancer: a national service evaluation.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BC38%2FpvFCqtQ%3D%3D&md5=129b25702e08ee2683bdc99df0b99b8dCAS |
Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ (2009) What are the unmet supportive care needs of people with cancer? A systematic review. Supportive Care in Cancer 17, 1117–1128.
| What are the unmet supportive care needs of people with cancer? A systematic review.Crossref | GoogleScholarGoogle Scholar |
Maher EJ (2008) An integrated support and information centre in a large UK cancer centre established in 1993 and replicated in more than 60 units across the United Kingdom and Australia. Current Oncology (Toronto, Ont.) 15, S64–S67.
| An integrated support and information centre in a large UK cancer centre established in 1993 and replicated in more than 60 units across the United Kingdom and Australia.Crossref | GoogleScholarGoogle Scholar |
McCorkle R, Ercolano E, Lazenby M, Schulman-Green D, Schilling LS, Lorig K, Wagner EH (2011) Self-management: enabling and empowering patients living with cancer as a chronic illness. CA: a Cancer Journal for Clinicians 61, 50–62.
| Self-management: enabling and empowering patients living with cancer as a chronic illness.Crossref | GoogleScholarGoogle Scholar |
McDonnell L, Reath J (2014) ‘Cancer Support Services in Australia and Internationally: a Review of the Literature.’ (Nepean–Blue Mountains Medicare Local: Sydney, NSW, Australia)
Mitchell AJ, Ferguson DW, Gill J, Paul J, Symonds P (2013) Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis. The Lancet Oncology 14, 721–732.
| Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis.Crossref | GoogleScholarGoogle Scholar |
Polley M, Jackson S, Seers H, Boxell E, Jolliffe R (2013) ‘Penny Brohn Cancer Care: Service Evaluation of ‘Living Well with the Impact of Cancer’ Courses.’ (Penny Brohn Cancer Centre: Bristol, UK)
Seely DM, Weeks LC, Young S (2012) A systematic review of integrative oncology programs. Current Oncology 19, e436–e461.
| A systematic review of integrative oncology programs.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BC3s3nvVGktQ%3D%3D&md5=a50ded1d3abfd3192836f2336ad222ebCAS |
Senate Community Affairs Reference Committee (2005) ‘The Cancer Journey: Informing Choice.’ (Parliament of Australia: Canberra, ACT, Australia)
Wadsworth Y (2011) ‘Everyday Evaluation on the Run: The User-friendly Introductory Guide to Effective Evaluation.’ (Allen & Unwin: Sydney, NSW, Australia)
Williams AM, Bulsara CE, Joske DJL, Petterson AS, Nowak A, Bennett KS (2014) An oasis in the hospital: the perceived benefits of a cancer support centre in a hospital setting offering complementary therapies. Journal of Holistic Nursing 32, 250–260.
| An oasis in the hospital: the perceived benefits of a cancer support centre in a hospital setting offering complementary therapies.Crossref | GoogleScholarGoogle Scholar |
