Abstract
Purpose
When a person is dying and during bereavement, family members often put their lives on hold to provide full-time care. Meaningful activities may be curtailed or forgotten. This study described the activities that changed between pre- and post-caring, and what factors assisted carers to re-engage in activities 2 years following the death of their partners.
Methods
A mixed methods design included a cross-sectional survey and face-to-face interviews. The study occurred in 2009 with 40 females that cared for a partner who had subsequently died of cancer 2 years previously. Engagement in community and other activities was determined through use of the Activity Card Sort–Australia and semi-structured interviews. The SF-36v2 measured physical and mental health status, and perceived social support was measured using the Multidimensional Scale of Perceived Social Support.
Results
Most carers in our study were more engaged in household activities post-caring compared to their pre-caring activities, but had decreased social and leisure activities. Living as a single person meant they had taken on new roles and responsibilities. Leisure and social activities previously associated with subjective well-being and health were reduced or lost. Greater social support contributed to a higher retention of activities post-caring.
Conclusions
Retention of activities could be facilitated by participation in community services, recreational groups and other support and interest groups, both during and after caring.
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References
Aoun S (2004) The hardest thing we have ever done: the social impact of caring for terminally ill people in Australia. Palliative Care Australia, Deakin West, ACT
Australian Institute of Health and Welfare (2004) Carers in Australia: assisting frail older people and people with a disability. Report no AIHW cat no. AGE 41. Australian Institute of Health and Welfare, Canberra
Access Economics (2005) The economic value of informal care. http://carersaustralia.com.au/storage/Economic-Value-Care-Oct-2010.pdf. Accessed 18 Feb 2013
Zapart S, Kenny P, Hall J, Servis B, Wiley S (2007) Home-based palliative care in Sydney, Australia: the carer's perspective on the provision of informal care. Health Soc Care Comm 15(2):97–107
McNamara B, Rosenwax L (2010) Which carers of family members at the end of life need mpore support from health services and why? Soc Sci Med 70:1035–1041
Grande G, Stajduhar K, Aoun S, Toye C, Funk L, Addington-Hall J et al (2009) Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med 23:339–344
Cannuscio CC, Colditz GA, Rimm EB, Berkman LF, Jones CP, Kawachi I (2004) Employment status, social ties, and caregivers' mental health. Soc Sci Med 58:1247–1256
Brazil K, Bedard M, Willison K, Hode M (2003) Caregiving and its impact on families of the terminally ill. Aging Ment Health 7(5):376–382
Grbich C, Parker D, Maddocks I (2001) The emotions and coping strategies of caregivers of family members with a terminal cancer. J Palliat Care 17(1):30–36
Keesing S, Rosenwax L, McNamara B (2011) 'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia. Health Soc Care Comm 19(6):636–644
Law M, Dunn W, Baum C (2005) Measuring participation. In: Law M, Baum C, Dunn W (eds) Measuring occupational performance: supporting best practice in occupational therapy. SLACK Inc, Thorofare, pp 107–128
Law M, Polatajko H, Baptiste S, Townsend E (2002) Core concepts of occupational therapy. In: Townsend E (ed) Enabling occupation: an occupational therapy perspective. Canadian Association of Occupational Therapists, Ottawa, pp 29–56
Everard K, Lach H, Fisher E, Baum M (2000) Relationship of activity and social support to the functional health of older adults. J Gerontol 55B(4):S208–S212
Lempinen P, Reikkinen R, Kauppinen M, Heikkinen E (2006) Activity as a predictor of mental well-being among older adults. Aging Ment Health 10(5):454–466
Doney R, Packer T (2008) Measuring changes in activity participation of older Australians: validation of the Activity Card Sort-Australia. Australas J Ageing 27(1):33–37
Packer T, Boshoff K, DeJonge D (2008) Development of the activity card sort–Australia. Aust Occup Ther J 55(3):199–206
Baum C, Edwards D (2001) Activity Card Sort (ACS) [visual material]. Washington University School of Medicine, Saint Louis
Chan V, Chung J, Packer T (2006) Validity and reliability of the Activity Card Sort—Hong Kong version. OTJR 26:152–158
Independent Living Centre (2006) Family carers and the physical impact of caring—injury and prevention. Department for Community Development WA, Office for Senior Interests and Volunteering
Ware J, Kosinski M, Bjorner J, Turner-Bowker D, Gandek B, Maruish M (2007) User's manual for the SF-36v2 health survey. QualityMetric Inc., Lincoln
Zimet G, Dahlem M, Zimet S, Farley G (1988) The Multidimensional Scale of Perceived Social Support. J Pers Assess 52:30–41
Stanley M, Beck J, Zebb B (1998) Psychometric properties of the MSPSS in older adults. Aging Ment Health 2(3):186–193
Hawthorne G, Osborne R, Taylor A, Sansoni J (2007) The SF36 version 2: critical analyses of population weights, scoring algorithms and population norms. Qual Life Res 16:661
Goldney R, Dunn K, Grande E, Crabb S, Taylor A (2009) Tracking depression-related mental health literacy across South Australia: a decade of change. Aust NZ J Psych 43(5):476–483
Aranda SK, Hayman-White K (2001) Home caregivers of the person with advanced cancer: an Australian perspective. Cancer Nurs 24(4):300–307
Christiansen C (1996) Three perspectives on balance in occupation. In: Zemke R, Clark F (eds) Occupational science: the evolving discipline. E A Davis, Philadelphia, pp 431–451
Dunn N, Strain L (2001) Caregivers at risk? Changes in leisure participation. J Leisure Res 33(1):32–55
Gahagan J, Loppie C, Rehman L, Maclellan M, Side K (2007) "Far as I get is the clothesline": the impact of leisure on women's health and unpaid caregiving experiences in Nova Scotia, Canada. Health Care Women Int 28(1):47–68
Hudson P, Trauer T, Graham S, Grande G, Ewing G, Payne S, Stajduhar K, Thomas K (2010) A systematic review of the instruments related to family caregivers of palliative care patients. Palliat Med 24:656–668
Acknowledgments
We would like to acknowledge the 40 bereaved family carers who participated so generously in the study. This work was supported by the National Health and Medical Research Council (grant no. 303323).
Conflict of interest
The authors declare they have no conflict of interest. The authors have full control of all primary data.
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Rosenwax, L., Malajczuk, S. & Ciccarelli, M. Change in carers' activities after the death of their partners. Support Care Cancer 22, 619–626 (2014). https://doi.org/10.1007/s00520-013-2014-1
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DOI: https://doi.org/10.1007/s00520-013-2014-1