Short Communication Received: February 16, 2015 Accepted after revision: April 23, 2015 Published online: June 10, 2015

Oncology 2015;89:242–244 DOI: 10.1159/000430918

Patients’ Knowledge and Attitudes towards Cancer Peer Support Programs Anna Stickel Sabrina Gröpper Antonia Pallauf Ute Goerling Charité Comprehensive Cancer Center, Berlin, Germany

Key Words Cancer peer support · Psychosocial needs · Attitudes

Abstract The objective of this study was to gain a better understanding of cancer patients’ preexisting knowledge, expectations and concerns towards peer support programs. Data were collected and analyzed in 51 patients using a standardized short interview and content analysis. Only 37% of the patients claimed to know peer support programs, and half of these regularly attended a support group. Forty-seven percent of the patients who did not know these programs showed a general interest. Reasons for attending a support group were primarily the exchange with other patients (18% of all statements), obtaining information about disease and treatment (10%) and receiving emotional support (9%). The main argument against participation was the fear of suffering when confronted with problems of others (21%). Utilization may be increased if volunteers and health care practitioners give patients more detailed information about the various offers of peer support. © 2015 S. Karger AG, Basel

Introduction

The psychosocial needs of patients often remain unsatisfied during oncological treatment [1]. Aiming to reduce this gap, peer support programs provide information, practical assistance and emotional support [2]. Volunteers in cancer support groups are often long-term survivors and are by way of their own experiences able to convey hope and confidence [2]. Various theories provide conclusive explanations for the benefits of support groups [3]. However, the participation in cancer support groups is rather low [4, 5]. Studies report a range between 8 [5] and 28% of patients who consult other patients as a source of emotional support, whereas family (73%) and physicians (63%) were mentioned much more frequently [6]. Studies addressing both the expectations and concerns associated with German peer support programs are lacking. We aimed at gaining a better understanding of patients’ preexisting knowledge and attitudes towards support programs in order to improve the way cancer peer support is introduced by its volunteers and by healthcare practitioners. Methods

© 2015 S. Karger AG, Basel 0030–2414/15/0894–0242$39.50/0 E-Mail [email protected] www.karger.com/ocl

Dr. Ute Goerling Charité Comprehensive Cancer Center Charitéplatz 1 DE–10117 Berlin (Germany) E-Mail ute.goerling @ charite.de

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Study Design In this pilot study, a convenience sample of patients receiving psychosocial counseling at the Charité Comprehensive Cancer Center was approached consecutively from January to July 2011.

Patients requiring immediate crisis interventions and those with language problems were excluded. The 15-min, standardized interview was integrated in basic psycho-oncological diagnostics. Depending on the level of preexisting information about support groups, the interview was divided into four parallel strands with different open-ended questions concerning positive and negative attitudes towards peer support. Analysis Descriptive statistics were used to analyze preexisting information, involvement and interest in peer support programs. Patients’ responses to open-ended questions on expectations and concerns related to support programs were transcribed and analyzed using a qualitative content analysis according to Mayring [7].

Results

Fifty-one patients out of 173 receiving psychosocial counseling were interviewed. No one declined. Patients were 54.5 years old on average (range 24–79), predominantly female (78%) and diagnosed with different types of cancer. Their disease experience ranged from 6 months to 13 years. Only one third of the patients (37%) claimed to know about cancer support programs, and 23% had already visited a support group. Almost half (47%) of the patients who did not know these programs showed a general interest. We distinguished between expectations or arguments in favor of joining a support group and concerns or arguments against participation. Our content classification achieved high inter-rater agreement (Cohen’s κ 0.82) [8]. Reasons for attending a support group were primarily the exchange with other patients (18% of all statements), obtaining information about the disease and treatment (10%) and receiving emotional support (9%). Arguments against participation were mainly fears of suffering when confronted with problems of others (21%). Although many patients could not express their concerns explicitly (8%), some stated they preferred other sources of support (6%), had social anxieties (5%) or had no time to attend support groups (4%).

ly mentioned barrier [4, 9]. Possibly, patients do not receive enough information about support groups during therapy. Nevertheless, approximately half of our patients expressed an interest in cancer peer support. This relatively strong interest could be explained by more open-mindedness regarding other kinds of support in patients attending psychosocial counseling. Most of the statements related to the fear of confrontation with the suffering of others, a negative effect of peer support also shown in other studies. Further reasons for not joining support groups given in the literature were sufficient support by other sources, social anxieties or an avoidant coping style [9, 10]. Patients’ attitudes towards German cancer support groups are relatively unexplored. Our data are not representative. Nevertheless, our patients’ attitudes towards peer support corresponded to those described in the international literature. By collecting qualitative data with a staggered design about both expectations and concerns, we gained a deeper understanding and could draw first conclusions to improve public relations on cancer peer support. The need for psychosocial support differs from patient to patient [11]. However, peer support programs are mostly evaluated positively by their participants [5, 10] and show many positive effects [3]. The influence of public relations on the attractiveness of cancer peer support programs remains an important question. More detailed information about the various offers would possibly facilitate utilization. Individual conversations with volunteers of peer support could be appealing for patients who fear an additional burden by hearing about the worries of others in a group setting. Advice from other patients on practical everyday issues is often underestimated, as well as the emotional support given by people sharing similar experiences. A positive attitude of the practitioner seems to be helpful for referral [8].

Disclosure Statement There was no financial support for this study. The authors have stated no conflicts of interest.

Discussion

Cancer Peer Support

Oncology 2015;89:242–244 DOI: 10.1159/000430918

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The majority of our sample did not know about cancer peer support programs, and less than a quarter had visited a support group. The lack of knowledge is a frequent-

References

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Oncology 2015;89:242–244 DOI: 10.1159/000430918

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Patients' Knowledge and Attitudes towards Cancer Peer Support Programs.

The objective of this study was to gain a better understanding of cancer patients' preexisting knowledge, expectations and concerns towards peer suppo...
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