Older Adults Living with Cancer: Supportive Care Needs and Utilization of Peer Support Services
Pearce, Nancy Jane Mae
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BACKGROUND: Cancer is primarily a disease of older adults with sixty percent of all incidences occurring in individuals 65 years and over. Coping with cancer may entail additional challenges for older adults due to co-morbidities, declining mobility, reduced social networks and ageism. To date, the majority of research examining supportive care needs has focused on younger women with breast cancer. Little attention has been paid to older adults’ experience with cancer, particularly with respect to psychosocial support. PURPOSE: The aims of the present studies were twofold: (1) to learn more about peer support services in Ontario, specifically: the type and location of available programs; extent of utilization by older adults; and factors that might facilitate or inhibit use by older adults; and (2) to gain a better understanding of the experiences and challenges facing older adults living with cancer, strategies and resources used to meet these challenges, unmet support related needs, as well as awareness of support services, principally peer support. METHODS: First, peer support services in Ontario were identified through an environmental scan. Subsequently, interviews were conducted with 24 key contacts from a purposeful sample (based on type and geographic location) of 30 of these groups. Next, surveys were administered to participants (n=220) and facilitators (n=39) from these groups to establish a profile of current peer support users and deliverers, and examine the extent to which older adults (age ≥ 65) utilized these services. Finally, a preliminary, in-depth, qualitative exploration from the perspective of older adults living with cancer was conducted through a focus group (n=6) and interviews with 20 older adults. RESULTS: The environmental scan yielded a total of 177 peer support cancer programs across Ontario; predominately group-based (93%). Most were located in urban centers. Few programs targeted colon cancer. In the 30 groups examined, breast and prostate cancer were the most common focus (60%). Group facilitators were primarily female (75%) and most had personally experienced cancer (77%). The male facilitators were older (p <.05) and most likely to lead the prostate groups. None of the programs systematically collected client information. Clients ranged in age from 25 to 91 years (mean = 64 ± 10.7). Many were long-term cancer survivors (average five years post diagnosis). Overall, less than half the clients were aged 65 or older. Clients over age 65 were predominately men (86%; p <.001) with prostate cancer. Almost 70% of program directors and over 90% of facilitators were unaware most individuals with cancer are over the age of 65. Interview participants were recruited primarily through the Canadian Cancer Society (CCS). Not surprisingly, 46% had participated in peer support. Older adults identified several challenges with respect to physical functioning, sexuality, emotional distress, and obtaining information. Participants utilized a variety of resources to meet informational and emotional challenges including, the Internet and the support of family and friends. Accessing routine follow-up care after the transition from ‘patient’ to ‘survivor’ was a significant unmet need. CONCLUSIONS: The findings support the premise that cancer peer support services may be under-utilized by older adults, particularly older women. The reasons for these findings remain unclear although ageism may be a factor. Due to the reliance on a convenience sample, qualitative findings that older adults were generally able to meet their supportive care needs cannot be generalized to all older adults living with cancer. Large organizations such as the CCS need to begin systematically collecting demographic and other information on clientele to enhance program planning and delivery. Further research studies on older adults living with cancer are needed to examine their supportive care needs.