How a cancer education group serves the underserved: 'Family' ties and battling cancer
ABSTRACT Socially disadvantaged cancer patients have unmet educational needs, but we know little about how educational groups might help. This exploratory study examines how a group education program met underserved patients' needs.
We examined a program for US patients in a safety-net hospital that featured English and Spanish language groups. We collected data from 54 group sessions over 28 months, including information on participant demographics, attendance, and satisfaction. Qualitative field notes collected by trained observers were analyzed via a grounded-theory approach to examine group dynamics.
Participants were underserved, had diverse disease sites and race/ethnicity, and reported that groups met their needs. Emergent analysis identified two themes related to group dynamics. First, members identified with each other as a fictive family, although the meaning of "family" differed in the groups. Second, groups focused on battling cancer not adjusting to life as a survivor-a focus that impaired participants' ability to discuss coping strategies for managing negative feelings.
Fictive 'family' engages participants. The emphasis on 'family' and resistance to coping strategies may reflect participants' social disadvantages.
Groups for the underserved should strive to create a 'family' and may have difficulty helping participants cope with their illness.
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ABSTRACT: This qualitative study examined the questions of what cancer support groups provide that other supportive relationships do not, and what the self perceived consequences are of support group attendance. Nine representative Australian cancer peer support groups, consisting of a total of 93 interviewees, 75 women, and 18 men, with a mean age of 62, took part in participant observation and focus group interviews, with the data analysed using positioning theory. Support groups were positioned by participants as providing a unique sense of community, unconditional acceptance, and information about cancer and its treatment, in contrast to the isolation, rejection, and lack of knowledge about cancer frequently experienced outside the group. Groups were also positioned as occasionally emotionally challenging, in contrast to the experience of normalising support from family and friends. Increased empowerment and agency were positioned as the most significant consequences of group support, consisting of increased confidence and a sense of control in relation to self, living with cancer, and interactions with others, in particular the medical profession. The support group was also positioned as facilitating positive relationships with family and friends because of relieving their burden of care, by providing a safe space for the expression of emotion. No difference was found between professionally led and peer led support groups, suggesting that it is not the professional background of the leader which is of importance, but whether the group provides a supportive environment, mutuality, and a sense of belonging, and whether it meets the perceived needs of those attending. It is suggested that future research should examine the construction and experience of social support in those who drop out of, or who do not attend, cancer support groups, in order to provide further insight into the contrast between social support within groups and support in other contexts.Social Science & Medicine 06/2006; 62(10):2565-76. DOI:10.1016/j.socscimed.2005.10.034 · 2.56 Impact Factor
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ABSTRACT: In parallel with a randomized study of the 'starting again' rehabilitation program for cancer patients, a group of 73 non-participants were monitored (another 20 patients declined monitoring). In comparison with participants (intervention + control), gender, diagnosis, and 10 out of 18 dependent measures differed significantly at baseline. The non-participants group included more men, mostly with cancer of the prostate and irrespective of gender, they showed lower problem levels than participants throughout. Thus, the wish to participate seems to be an indicator of the need for assistance in the rehabilitation process. Social validation of effects was performed by comparing the non-participants with the intervention group. The rationale for this comparison is that non-participants presumably felt so well that they were in no need of rehabilitation. Effects on three variables were socially validated: patients' appraisal of having received sufficient information, physical strength and fighting spirit. No negative effects on outcome variables resulting from being randomized to the control condition (resentful demoralization) were detected when non-participants were compared with controls over one year. Further analysis showed that although a few patients in the control group may have experienced resentful demoralization, this did not significantly affect the outcome variables.Psycho-Oncology 03/1997; 6(1):35-46. DOI:10.1002/(SICI)1099-1611(199703)6:1<35::AID-PON241>3.0.CO;2-J · 4.04 Impact Factor
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ABSTRACT: In total, 132 cancer patients in four oncology outpatient clinics in Hamburg completed a questionnaire consisting of a newly designed instrument for measuring psychosocial support. In this questionnaire, patients were asked about their knowledge of institutions offering support, their previous participation in psychosocial support, the reasons for participation and their experience with and attitude towards it. A second section consisted of standardized instruments: the EORTC QLQ-C30 questionnaire (Aaronson), the Brief Symptom Inventory (Derogatis and Melisaratos), the List of Physical Complaints (von Zerssen and Koller) and the Impact of Event Scale (Horowitz). Descriptive and variance-analytical methods were used for the analysis of results. Most respondents were women (88%). The largest group (72%) had a history of breast cancer. A total of 28% of the patients in the sample had participated in psychosocial support, about 4% of these in self-help groups. Participants in psychosocial support did not differ from non-participants in gender, but they were significantly younger. They showed considerably higher scores in emotional and physical distress than non-participants, their attitude towards psychosocial support was more positive, and they had more knowledge about institutions offering support than non-participants. The main reasons listed for their participation in psychosocial support were mental distress, a desire to obtain help, and the wish to cope with the illness. The main reason for not participating was sufficient support from the family, friends or doctors.Psycho-Oncology 11/2001; 10(6):511-20. DOI:10.1002/pon.543 · 4.04 Impact Factor