Online support for family and friends of cancer patients
Family caregivers provide valuable logistical, informational and emotional support for cancer patients. Reliance on family caregiving in Canada is expected to grow. Family and friends who care for a cancer patient can experience high levels of distress, anxiety and depression:
- in some cases the level of emotional suffering can meet or exceed those of the patient (Grunfeld, Coyle et al. 2004);
- often the psychosocial needs of caregivers go unmet (Janda, Steginga et al. 2008);
- caregivers living in remote rural areas have identified needing the most help with fear, which is related to physical deterioration of the patient, cancer recurrence, and uncertainties about the future (Clavarino, Lowe et al. 2002).
CancerChatCanada is a pilot program offering counsellor-facilitated, synchronous online (ie., chat) support groups for family members caring for cancer patients in rural and metropolitan areas throughout Canada. It is a grant-funded program with a research arm focused on learning the best ways to provide online support to this population, which has specific needs and limited time and resources. Findings are just beginning to emerge, and are reported briefly here.
To date, 44 caregivers have taken part in the CancerChatCanada program. Twenty-two post-group interviews have been conducted with the caregivers. They clearly indicate that caregivers are looking for this form of support.
Caregivers are mostly caring for a palliative patient and are predominantly female, although male caregivers (29%) have participated also. Caregivers are usually caring for a spouse (66%) or a parent (19%). Those who have participated tend to be relatively young, with an average age of 51 years, and nearly 30% live outside of large metropolitan areas where face-to-face peer support for caregivers is rare.
Most caregivers perceive the groups as valuable and meeting their support needs. The majority expressed high satisfaction with the technology, which was considered easy to use. They expressed appreciation for the counsellor-facilitator and also felt their expectations for group support were met. This is reflected in the average group participation rate of 80%. There were caregivers who continued to participate in the group even when they were traveling and even when their situations improved, in order to give support to the more distressed members of the group. The two primary reasons given by caregivers for leaving the online group were bereavement or illness recurrence (10%) and scheduling difficulties (10%).
How the program works
People are referred to the program by medical professionals or self-referred if they learned about the program from others, the web, or through printed posters and postcards. Groups are held with between 5-7 members and a counsellor. Through telephone contact by the national office they are provided with information about the online support groups and the research aspects of the program. A brief assessment of the person's suitability and availability for online support is conducted. Those expressing interest in the program are asked to provide informed consent and then complete an online enrolment assessment. Participants are given an online group assignment and log-in ID. They are then asked to complete a short (7-minute) questionnaire online before beginning their support group meetings. After 10 weeks, when the group is completed, the participant takes another brief follow-up survey and may be asked to participate in a telephone interview with a member of the research team.
Caregivers are able to discuss important concerns, give and receive encouragement and support, and express feelings. There are no assigned topics for each chat session. Instead, the themes for the discussions arise from what the caregivers are experiencing. Topics frequently discussed in these groups include the emotional role burden of the caregiver, the pain of watching a loved one deteriorate, the transitions from home to hospice and back, practical issues such as wills and funerals. Members also express difficult feelings such as anger and guilt and grief. This aspect of the groups is particularly valued, as expressed by this participant: "I have friends but others didn't understand what I was going through ... it was nice to be able to say 'this is happening, what do I do?'. Strong kinship was there - we were all in pain together."
Post-group interviews reveal that a large majority of participants feel safe to share important feelings and discuss their most pressing concerns with the group. Comments such as "this group has been a blessing" and "it's been an immense help to me" are frequent and demonstrate that caregivers are finding this type of support valuable. During the chat sessions, caregivers often express that being able to see others' ups and downs and how others cope helps them gain confidence and feel better prepared to deal with their own challenges. They encourage each other to take respite time. As another member expressed, "This is the only place where we get acknowledged for what we go through as caregivers."
Counsellor role and anonymity
Interviews have revealed that the anonymity and privacy of online support, and the presence of a counsellor as facilitator, are of great value, and vital for satisfaction. They provide a sense of emotional safety for the participants that allows them to speak more freely than if they were in a face-to-face group. Being able to express difficult thoughts and feelings openly, or to cry online without being observed was described as very helpful by nearly everyone who was interviewed.
The counsellor was seen to have helped deepen and focus the online discussion in a variety of ways:
summarizing the group's comments which are frequently typed in parallel;
- summarizing the group's comments, which are frequently typed in parallel;
- bringing the group together around commonalities that reduced feelings of loneliness;
- checking-in with people who have not typed much to draw them into the group; reframing the ideas and difficult events that are being discussed, and validating and normalizing difficult feelings.
Participants valued the counsellors knowledge and presence, as described by this member: "we needed her she kept us calm, could help with perspective, she was able to help us take a step back and listen not just vent."
Family members caring for loved one for whom a cure is not possible, typically experience a high level of emotional strain and many practical and informational challenges. High-quality support groups provide comfort and relief as well as valuable information, but such groups are often not available or accessible. Our experience to date reassures us that counsellor-facilitated online support groups can meet this need, and provide a welcome resource for Canadians. The program and research will continue with support from the Canadian Partnership Against Cancer until 2012, and our hope is that it will continue long after that date.
Clavarino, A. M., J. B. Lowe, et al. (2002). "The needs of cancer
patients and their families from rural and remote areas of Queensland."
Aust J Rural Health 10(4): 188-95.
Girgis, A. and S. Lambert (2009). "Caregivers of cancer survivors: the
state of field." Cancer Forum 33(3): 168-171.
Grunfeld, E., D. Coyle, et al. (2004). "Family caregiver burden: results
of a longitudinal study of breast cancer patients and their principal
caregivers." Cmaj 170(12): 1795-801.
Janda, M., S. Steginga, et al. (2008). "Unmet supportive care needs and
interest in services among patients with a brain tumour and their
carers." Patient Educ Couns 71(2): 251-8.