Living with cancer: the occupational therapy role in exploring and enabling leisure participation. Sarah Shipp Bachelor of Occupational Therapy (Hons) Occupational Therapist, Western Health Dr Carol McKinstry, La Trobe Rural Health School Elizabeth Pearson and Jane Farrow, Peter MacCallum Cancer Centre Monday 11 July, 2011
Presentation outline Background
Current study
Recommendations
• Cancer and leisure research
•Study aims • Methodology • Participant stories • Themes • Limitations • Implications for Occupational Therapy practice • Recommended future research
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Background to study •
Trends in oncology – cancer rehabilitation (Paul & Buschbacher, 2011) – quality of life for survivors (Richardson, Wingo, Zack, Zahran, & King, 2008)
•
Occupational therapy focuses on the interaction between meaningful activities (occupations) and health/ quality of life.
•
Occupational performance and quality of life – lack of research on this relationship for cancer survivors.
•
Importance of leisure for quality of life, particularly for people living with a chronic illness (Hutchinson, 2008).
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Cancer and leisure research • Benefits of leisure (cancer and chronic illness) • Impact of cancer on leisure (participation restriction, changing meaning and importance) Limitations of research Lack of Australian studies Focus on breast cancer and physical activity Lack of qualitative and longitudinal studies
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Aims • Build on limited research in oncology and leisure • Enhance understanding of how cancer impacts on leisure participation • Examine the need for occupational therapists working in oncology to consider possible changes in practice
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Methods • Narrative inquiry • Ethics approval from Peter MacCallum Cancer Centre (PMCC) and LaTrobe University • Purposive sampling using inclusion criteria • Recruitment through PMCC Occupational Therapists • Data collection: Two semi-structured narrative interviews • Data Analysis: story creation, theme development using the Canadian Model of Occupational Performance as the theoretical framework (Canadian Association of Occupational Therapists, 2002)
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Participants’ Stories Participant
Len
Doug
Geoff
Michael
Age
78
59
48
48
Diagnosis
Rectal cancer, diagnosed 2008
Rectal cancer, diagnosed 2001
Rectal cancer, diagnosed 2008
Rectal cancer, diagnosed 2006
Treatment
Bowel surgery (resection) in combination with Chemotherapy and Radiotherapy
Social situation
Lives with wife
Divorced, lives alone
Employment
Retired horticulturist
On disability support pension
Residential location
Rural Victoria
Rural Victoria
Lives with wife and two children Accountant
Lives with wife and two children Motor vehicle assessor
Metropolitan Melbourne
Rural Victoria
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Themes • Conceptualised using the CMOP: – Occupation (Leisure) Impacting on leisure (barriers and enablers):
– Person – Environment
Diagram retrieved from http://metaot.com/CMOP-Diagram
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Person Supporting literature
Findings Fatigue
Geoff: “I just…didn’t seem to have the energy to do anything”
Diaz, et al. (2008)
Recovery
Geoff: “I’m getting stronger”
Rogers, et al. (2006)
Reduced memory and concentration
Len: “My concentration was not there”
Asher (2011)
Lacking motivation
Doug: “So, there’s that ah… that lack of physical endurance, and hence I don’t have the inclination”
None found
Positive attitude
Len: “I’m not going to let this impact on me, ... I intend to let my life go on, which way that it was.”
Physical
Cognitive
Affective
Steginga, et al. (2009)
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Environment Supporting literature
Findings
Physical
Treatment
Len: “We’ve been down here ( at the cancer centre) more times than we’ve been home.”
None found
Post-operative restrictions
Michael: “They’ve told me I can’t lift anything heavy for a few months… (it) sort of knocks your gardening out.”
Taylor & Currow (2002)
Managing colostomy bag
Michael: “I found that it was too much of a hindrance to go out…you’re forever up and down from the toilet.”
Rozmovits & Ziebland (2004)
Crowds
Geoff: “I just don’t think I feel comfortable amongst a big crowd.”
Vilhauer (2008)
Support
Len: “ With the folk that I’ve been through it (with), ah they’ve helped me keep a positive attitude.”
Social Shannon (2005)
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Occupation (Leisure) Supporting literature
Findings Stopping active and community based leisure
Len: “ My outdoor activities have been really curtailed. ”
Richardson, et al. (2008) Rozmovits & Ziebland (2004) Malone, et al. (1994)
Continuing passive leisure
Michael: “I found now I do read a lot more than what I ever did.”
Shannon (2005)
Imbalance (lack of leisure)
Len: “It impacted upon my life (in) that I couldn't do anything, except get that treatment and then have the operation”
None found
Resuming leisure gradually after treatment
Len: “It’s a great feeling to return to my precious gardening”
None found
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Leisure – Spirituality Findings
Supporting literature
Adapting expectations
Michael: “I had to come to terms that it was going to take longer.”
Little, et al. (2000)
Grief for lost leisure
Doug: “I probably was mad internally that I knew that I couldn’t play (golf).”
Fasching, et al. (2007)
Sense of ability
Doug: “It was proving to myself that I could at least do it again.”
None found
Grounding experience
Geoff: “you’ve gotta see people … you’ve gotta get out of your house… otherwise you’ll go crazy”
Shannon & Bourque (2005) Unruh, et al. (2000)
Enjoyment
Len: “(Gardening) gave me a lot of satisfaction.”
Shannon (2005)
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Summary of findings Pattern of reduced leisure participation (mainly active and community based leisure) with most slowly resuming preferred activities. - Restricted by: fatigue, cognitive decline, a lack of motivation, treatment time and travel, post-operative restrictions and managing a stoma - Enabled by: positive attitude, social support
Significance of leisure: - Affirmed identity and sense of ability - Experienced enjoyment and calm/peace
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Limitations of current study • Small sample size • Purposive sampling • Limited variability of participant demographics • Impact of researcher on data gathering and analysis
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Implications for practice • Enhanced understanding of role of leisure and changes in leisure when living with cancer. Gaining holistic appreciation of occupational performance issues. • Consideration of leisure in assessment, goal setting and intervention processes: – Education regarding possible leisure changes – Facilitating leisure participation and linking with appropriate services
• Rehabilitation services in oncology, focus on quality of life and meaningful occupational engagement
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Recommendations for future research • Relationship between cancer and leisure participation – Larger sample sizes, variety of participants, qualitative, longitudinal
• Effective leisure assessment and intervention with a focus on quality of life • Impact of cancer on occupational performance and occupational balance • OT role in oncology: - occupation-based care - rehabilitation focussed
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References Asher, A. (2011) Cognitive dysfunction among cancer survivors. American Journal of Physical Medicine and Rehabilitation, 90 (5), S16-26 Canadian Association of Occupational Therapists (2002). Enabling Occupation: An Occupational Therapy Perspective. Ottawa: CAOT Publications ACE. Diaz, N., Salvador, M., Rolfo, C., Garcia-Alonso, P., Carulla, J., Magro, A., Miramon, J., Rodriguez, C. A., de Castellar, R., & Gasquet, J. A. (2008). Patient’s perceptions of cancer-related fatigue: results of a survey to assess the impact on their everyday life. Clinical Translational Oncology, 10, 753-757. Fasching, P. A., Nicolaisen-Murmann, K., Lux, M. P., Bender, H. G., Ackermann, S., Beckmann, M. W., Bani, M. R. (2007). Changes in satisfaction in patients with gynaecological and breast malignancies: an analysis with the Socio-Economic Satisfaction and Quality of Life questionnaire. European Journal of Cancer Care, 16, 508-516. Hutchinson, S. L., Bland, A. D., & Kleiber, D. A. (2008). Leisure and stress-coping: Implications for therapeutic recreation practice. Therapeutic Recreation Journal Special Issue, 24(1), 9-23. Little, M., Jordens, C. F. C., Paul, K., Sayers, E., & Sriskandarajah, D. (2000). Face, honour and dignity in the context of colon cancer. Journal of Medical Humanities, 21(4), 229 – 243. Malone, M., Harris, A. L., & Luscombe, D. K. (1994). Assessment of the impact of cancer on work, recreation, home management and sleep using a general health status measure. Journal of the Royal Society of Medicine, 87, 386-389. Paul, K. & Buschbacher, R. (2011) Cancer Rehabilitation. American Journal of Physical Medicine and Rehabilitation, 90(5), S1-4.
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Richardson, L. C., Wingo, P. A., Zack, M. M., Zahran, H. S., & King, J. B. (2008). Health-related quality of life in cancer survivors between ages 20 and 64 years. Cancer, 112(6), 1380-1389. Rogers, L. Q., Courneya, K. S. Robbins, K. T., Malone, J., Seiz, A., Koch, L., Rao, K., & Nagarkar, M. (2006). Physical activity and quality of life in head and neck cancer survivors. Supportive Care in Cancer, 14, 1012 – 1019. Rozmovits, L., & Ziebland, S. (2004). Expressions of loss of adulthood in the narratives of people with colorectal cancer. Qualitative Health Research, 14, 187-203. Shannon, C. S. (2005). Breast cancer treatment: The effect on and therapeutic role of leisure. American Journal of Recreation Therapy, 4(3), 25-31. Shannon, C. S., & Bourque, D. (2005). Overlooked and underutilised: The critical role of leisure interventions in facilitating social support throughout breast cancer treatment and recovery. Social Work in Health Care, 42(1), 73-92. Steginga, S. K., Lynch, B.m., Hawkes, A., Dunn, J., & Aitken, J. (2009). Antecendents of domainspecific quality of life after colorectal cancer. Psycho-oncology, 18, 216-220. Taylor, K., & Currow, D. (2003). A prospective study of patient identified unmet activity of daily living needs among cancer patients at a comprehensive cancer care centre. Australian Occupational Therapy Journal, 50, 79-85. Unruh, A. M., Smith, N., & Scammell, C. (2000). The occupation of gardening in life-threatening illness: A qualitative pilot project. The Canadian Journal of Occupational Therapy, 67(1), 70-77. Vilhauer, R. P. (2008). A qualitative study of the experiences of women with metastatic breast cancer. Palliative and Supportive Care, 6, 249-258.
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