Qual Life Res DOI 10.1007/s11136-015-1021-8
The experience of cancer survivors in community-based psychosocial support activities in Shanghai, China: a qualitative study Ji-Wei Wang1 • Tian-Rui Zhang1 • Qian Shen1 • Zhi-Qi Yang1 • Cong Liu1 • Si-Jia Chen1 • Jiang Li2 • Zheng-Nian Luo3 • Zheng-Ping Yuan4 • Jin-Ming Yu1
Accepted: 12 May 2015 Ó Springer International Publishing Switzerland 2015
Abstract Purpose Cancer survivors are often embroiled in various physical and psycho-social issues as a consequence of cancer diagnosis and treatment. Psycho-social support activities in the phase of rehabilitation were provided to enhance their quality of life. This study seeks to explore and understand their experience of engagement in Shanghai Cancer Rehabilitation Club (SCRC). Methods Sixty-eight participants attended eight semistructured focus group interviews. Data were transcribed verbatim, and thematic analysis framework was adopted for data analysis. Results The participants reported benefits such as psychological support, informational provision and tangible support in the activities. Public services were reported to have restored their dignity and enabled them to rediscover their own meaning of life. Participants also pointed out challenges on functioning and opportunity for development of SCRC. Ji-Wei Wang and Tian-Rui Zhang are both co-first authors for this article. & Ji-Wei Wang [email protected] Jin-Ming Yu [email protected] 1
School of Public Health and Key Laboratory of Public Health Safety, Fudan University, 130 Dong-An Road, Shanghai 200032, China
2
Jonathan and Karin Fielding School of Public Health, University of California, Los Angeles, 650 Charles Young Drive South, Los Angeles, California, USA
3
Shanghai Health Education Association, Shanghai, China
4
Shanghai Cancer Rehabilitation Club, Shanghai, China
Conclusions The psycho-social support activities of SCRC had influenced cancer survivor’s life. Public health resources and supportive policies should be in place to support local self-help cancer rehabilitation groups. Keywords Cancer survivors Psycho-social support activities Self-help group Quality of life Qualitative research
Introduction Cancer incidence in China increased from 184.81/100,000 in 1989 to 286.69/100,000 in 2008 as a result of growing public exposure to ageing population and industrial carcinogens [1, 2]. By contrast, a large number of cancerrelated deaths have been averted due to an improvement in tertiary healthcare delivery [3]. Extrapolating from current trends, the number of cancer survivors in China will rise correspondingly. Cancer survivors are people who were diagnosed with cancer and have been affected by the diagnosis ever since [4]. The vast majority of cancer patients experience one or more symptoms or side effects during and after treatment [5]. The most common side effects are pain, fatigue and emotional distress [6]. These and other side effects of chemotherapy and radiotherapy include appetite changes, eating problems, weight loss, constipation, diarrhoea, hair changes and immune suppression [7, 8]. Many of these side effects are also associated with surgery [9], as well as targeted and hormonal therapies [10]. This definition of cancer survivorship highlights the need for holistic intervention strategies which add psychosocial approaches to conventional clinical practice. Cancer survivors are often embroiled in following physical and
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psycho-social issues as a consequence of cancer diagnosis and treatment: (a) symptoms and side effects of chemotherapy [11], (b) fear of recurrence [12], (c) financial difficulty [13], (d) lack of adequate guidance on diet and physical activity [14], (e) adverse changes of familial and social relationships [15] and (f) inability to adjust life after cancer [16]. As discussed in previous studies, a myriad of psycho-social intervention approaches, such as cognitivebehavioural interventions [17], counselling [18], relaxation training [19], stress management and support group interventions [20, 21], have acted positively in alleviating psychological morbidity and improving the quality of life in cancer survivors. While there are a large number of cancer support groups in the West such as Macmillan Cancer Support in the UK which improves the lives of people affected by cancer by providing practical, medical, emotional and financial support [22] and the Cancer Support Community in the USA which provides a platform where survivors and their families are free to share their feelings [23], in China much effort has been focused on understanding the cause and treatment of cancer [24]. Oncological health care in the phase of rehabilitation has received scant research attention; health education is not available during the posttreatment, follow-up phase in China [24]. In Westernised countries, health education in the post-treatment phase is becoming more prominent. Furthermore, community-based cancer management programmes have not been properly implemented. Public awareness of cancer support groups remains low, and people are reluctant to seek help outside the family [25]. In Shanghai, a non-governmental organisation (SCRC) composed entirely of cancer survivors named Shanghai Cancer Rehabilitation Club (SCRC) has been flourishing. This self-help support group, founded in 1989, is registered with the Shanghai Bureau of Civil Affairs and functions as an independent body. With seventeen affiliates and 13,000 registered members in 2012, it has been working actively to reshape the lives of its members. They gather in local communities each month for lectures on the essentials of rehabilitation, workshops on lifestyle changes and a variety of leisure activities. The quarterly brochures are compiled, printed and allocated to each member at no charge. Meanwhile, there are many clinicians who voluntarily provided advice on medical issues. They voluntarily serve local communities to express gratitude for life. Board members pay regular home visits to cancer survivors with relapse or recurrence. Cancer survivors learn the recruitment information of SCRC through a variety of channels, such as TV, newspapers and website of SCRC. Any cancer survivor could voluntarily register as the member of SCRC without any payment.
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Since qualitative study has a pivotal role in generating rich, in-depth data which illuminate our understanding of complex social, behavioural and educational issues [26], the study aims to conduct a qualitative study to explore and understand their experience of cancer survivors who attend the SCRC.
Methods Due to the paucity of information about the experience of cancer survivors in community-based psycho-social support activities of SCRC, we used qualitative methodology to guide the investigation and explore the research questions. These methods allow for a deeper, richer understanding of the survivorship experience via open dialogue between the researcher and target population. Qualitative methods can enhance psycho-social research by identifying additional relevant variables, by generating new hypotheses and by strengthening conceptual validity [27–29]. Recruitment Recruitment information was disseminated to all seventeen affiliates of SCRC. Eight of them participated in the study and disseminated the information to their members. A total of sixty-eight members from different districts of Shanghai who had been attending SCRC for more than a half year were recruited on a first-come, first-choice basis. Informed consent was granted, and each participant was required to complete a questionnaire requesting socio-demographic information. Ethical approval to conduct this study (Protocol Number RB #2013-04-0450) was granted by the Medical Research Ethics Committee of the School of Public Health, Fudan University, in Shanghai, China. Data collection Between September and November 2013, eight focus groups were formed, each comprised of six to ten participants from the same affiliate group. Taking place at different community centres, the focus groups lasted from sixty to ninety minutes and were both video- and audiorecorded. At the beginning of each focus group, the participants were notified of the purpose of the study and encouraged to freely express their ideas. The focus groups were conducted primarily in Mandarin, but Shanghainese was allowed due to the variation in education. Relevant sections of the semi-structured focus group guide included: (a) needs and motives of receiving psycho-social interventions in the rehabilitation phase, (b) benefits of participating in SCRC, (c) memorable experiences with SCRC
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and (d) challenges the SCRC faces. Open-ended questions on these topics were asked to facilitate discussion and encourage objective and meaningful full response. Consent was obtained from each participant before the focus groups. There was no relationship established with participants prior to study commencement. The focus groups were conducted by JW in Mandarin and, if participants requested it, also in the local Shanghai dialect. Free-flowing conversation was encouraged with the interviewer ensuring that all questions had been discussed (QS). All discussions were recorded using handwritten notes, audio and video (TR and ZQ). At the end of each focus group, a gift valued 20 Chinese Yuan was given to each participant as a token of appreciation. Analysis A thematic analysis approach [30] was used. This is a systematic process of identifying patterns of meaning in participants’ accounts. The analysis comprised six steps: (1) familiarising with your data; (2) generating initial codes; (3) searching for themes; (4) reviewing themes; (5) defining and naming themes; and (6) producing the report. In accordance with good practice guidelines for qualitative research [31], ‘‘credibility checks’’ were undertaken throughout the analysis. This coding was collated to generate potential themes by TR, which was then checked against the original data by other authors (ZQ and QS). If these three authors had different opinions on a theme, a research meeting was held to discuss and decide whether it could be a theme amongst them. When all the themes, patterns and connections were determined, they were discussed and reviewed by all authors to ensure accuracy and form the final themes. The comparison was made between the transcripts of the different focus groups. These themes all were raised by all eight focus groups. Qualitative data analysis software was not used in our analysis. Six focus groups had been conducted when saturation was reached. No more new information emerged in the last two focus groups. For the fairness and accuracy of the study, verbatim quotations are presented to illustrate how the psycho-social intervention affected their lives. To minimise the risk of misinterpretation, which could alter the nuances of meaning, each quotation is inserted along with its original context. One author (TR) primarily translated the participants’ quotes from Mandarin to English. Then, another author (JL) who spoke both Mandarin and English checked the translation several times to ensure the greatest possible equivalence between the translation and source text. Anonymity is preserved to guarantee complete confidentiality for the subjects.
Results Basic demographic, socio-economic information and clinical diagnosis about the sixty-eight participants are summarised in Table 1. The participants reported benefits in the activities. Rewarding communities were reported to have restored their dignity and enabled them to rediscover their own meaning of life. Participants also pointed out challenges on functioning and opportunity for development of SCRC. ‘‘Perceived benefits’’, ‘‘rewarding communities’’ and ‘‘challenges’’ are the three themes which have been identified. Under the category of ‘‘perceived benefits’’, there are three subthemes: ‘‘psychological support’’, ‘‘informational provision’’ and ‘‘tangible support’’. There are no subthemes under the other themes. The themes, subthemes and sub-subthemes are summarised in Table 2. Table 1 Socio-demographic characteristics of the subjects (n = 68) Characteristics
No. (%)
Age range(years) 42–49
4 (5.88)
50–59
26 (38.24)
60–69
31 (45.59)
70–78
7 (10.29)
Gender Male
18 (26.470)
Female
50 (73.530)
Education Junior high school or low Senior high school
25 (36.76) 24 (35.29)
College or above
19 (27.96)
Tumour Breast cancer
31 (45.59)
Colorectal and rectal cancer
10 (14.71)
Lung cancer
7 (10.29)
Leukaemia
6 (8.82)
Lymphoma
4 (5.88)
Thyroid cancer
3 (4.41)
Liver cancer
2 (2.94)
Ovarian cancer
2 (2.94)
Tongue cancer
1 (1.47)
Nasopharyngeal cancer
1 (1.47)
Endometrial cancer
1 (1.47)
Monthly household income (denomination) Up to 2000
15 (22.06)
2001–3000
20 (29.41)
3001–4000
139 (19.12)
4001–5000
20 (29.41)
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Qual Life Res Table 2 Themes, subthemes and sub-subthemes from the focus group findings
Theme
Subtheme
Perceived benefits
Psychological support
Sub-subtheme Comfort Confidence Family adaptation Courage against stigma
Informational provision
Interpersonal information support
Tangible support
Cash assistance
Information from credible sources Applying for relief Rewarding communities Challenges
Perceived benefits Psychological support Comfort Some participants would rather seek comfort from their peers than from their closest relations. ‘‘We open our hearts to each other [the peers] about the trouble we’re having.’’ (Female, 60, breast cancer) ‘‘If you tell your family what’s going on, they’ll never understand, because they’ve never had it before.’’ (Female, 67, breast cancer) Confidence Experienced survivors, sometimes unintentionally, acted as positive role models who inspired great confidence. ‘‘I wasn’t the only one who’d got the disease. But [some survivors in SCRC] they’d lived another ten or twenty years, some even more. I could make it as well.’’ (Male, 62, colorectal cancer) One participant who had attempted suicide regained confidence in happy living. ‘‘Soon after the treatment, for many reasons, I was thinking up ways to end it all. After joining SCRC, I’m now outgoing and cheerful.’’ (Female, 45, endometrial cancer) Newly enrolled members were encouraged to set goals for life with hope to live on. ‘‘You’ve got to set goals! First, stay alive till your kid takes college entrance exam, then witness his marriage and next help him to bring up his kids.’’ (Male, 61, oral cancer)
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Annual celebrations were held for those who had recently achieved their 5- or 10-year survival. Survivors with such great honour humorously called the celebration their fifth or tenth birthday, expressing hope for their new lease of lives. ‘‘We think it’s [the fifth birthday] very important because it marks the start of a normal life.’’ (Male, 75, lung cancer) Family adaptation Practical communication skills to lubricate family relationships and family mediation to help resolve conflicts facilitated family adaptation. Therefore, survivors and their families would be supported psychologically when coping with the disease together. ‘‘Every week when I was going home from SCRC, they’d say to me, ‘when you get home, don’t forget to hug your family and say a big thank-you for all their love and care throughout the years.’’’ (Female, 42, breast cancer) ‘‘Sometimes, what she [his wife] said was a huge blow. When it happened, he’d come to us, with angry tears out of his eyes. We’d go to his house and talk.’’ (Male, 68, colorectal cancer) ‘‘Stay married and keep your vows for life. Don’t even think about divorce or remarriage. Remarriage is full of unknowns.’’ (Male, 68, colorectal cancer) Courage against stigma Individual survivors regained strength to fight against social discrimination and exclusion when survivors grouped together. ‘‘When I was taking exercise on the university campus, I couldn’t believe that people sniggered and
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pointed their fingers at me, without trying to hide anything. Feeling embarrassed, I quickly ran away. But being together we felt stronger. We didn’t care [what other people thought] anymore. No one seemed to get scared that easily.’’ (Female, 42, breast cancer) Informational provision Interpersonal information support Interpersonal relationships amongst peers made information support accessible to the members. One participant said information from the peers was helpful. ‘‘If I wasn’t well, I’d ask my friends [peers] which hospital to go to, which department to visit and which doctor to see.’’ (Female, 56, breast cancer) ‘‘What they [peers] said is at least ninety percent true.’’ (Female, 62, breast cancer)
Information from credible sources Philanthropic oncologists and nutritionists had been invited to deliver lectures which were popular and thought to be reliable. One participant said information from the lectures was credible. ‘‘It was usually very hard to register with any of these well-known doctors but here they gave us lectures for free. We have hardly missed them once.’’ (Female, 66, breast cancer) ‘‘I believe in these lectures, a big reason is they’re not planned to make money.’’ (Female, 65, ovarian cancer) In addition to the lectures, quarterly brochures were compiled, printed and allocated to each member at no charge. ‘‘We have rehabilitation brochures about how others have been fighting cancer. I usually go through pages and pages to learn from their experience.’’ (Female, 60, lymphoma) Tangible support
Applying for relief They informed neighbourhood committees annually of their peers most in need. ‘‘Every year we hand over a name list of our peers most in need to the neighbourhood committee. So they’ll get some money [from the committee] at the Spring Festival.’’ (Male, 54, gastric cancer)
Rewarding communities The participants said they had participated in various public services in the name of SCRC. ‘‘We presented special performances at old people’s homes.’’ (Female, 67, breast cancer) ‘‘5th December is International Volunteer Day, we’re planning to pick dry leafs and rubbish at People’s Park and along East Nanjing Road. We’ve been doing this for eight years.’’ (Male, 75, lung cancer) ‘‘At Changqiao community health centre, we showed them [patients] the way. We took their heights and weights, their blood pressure and blood sugar levels, and gave them eye tests as well.’’ (Female, 62, ovarian cancer) ‘‘Every year at Spring Festival, even when it was snowing, we bought food worth from eighty to a hundred yuan like breakfast cereals for people over seventy years old and carried our gifts to their homes.’’ (Female, 62, breast cancer) By offering public services, they restored their dignity and discovered new meaning of life. ‘‘When I came out of the house and got fully involved in the community, I realised that even though I’m a patient, I can still make a contribution to the society. I felt happy and cheerful.’’ (Male, 60, colorectal cancer) ‘‘Being in a good mood is essential for a good recovery and it’s the best medicine.’’ (Male, 60, colorectal cancer) ‘‘I’ll serve the community for the rest of my life.’’ (Female, 54, breast cancer) ‘‘Serve the community and make no demands on it.’’ (Male, 75, lung cancer)
Cash assistance These participants raised money amongst themselves to help their peers in need. ‘‘In his hardest time, we raised over a thousand yuan and went for a home visit.’’ (Male, 75, lung cancer)
Challenges The participants said the SCRC’s functioning and expansion were constrained by a lack of donations and a lack of their own premises.
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‘‘We always recruit new members. What can we do for them? Everything needs money.’’ (Female, 65, ovarian cancer) ‘‘We don’t have our own activity place. We can only sit on an empty stone bench in People’s Park if it doesn’t rain.’’ (Female, 50, breast cancer) However, when asked about whether any communitybased healthcare professionals have been involved in the group intervention, one participant reported being ignored and expressed her dissatisfaction. ‘‘They only call me once a year to see if I’m still alive.’’ (Female, 56, breast cancer)
Discussion SCRC was reported to have provided psycho-social support activities including psychological, informational and tangible support to cancer survivors which not only met their needs but also had influenced their lives. The interaction between group members not only brought comfort but also increased confidence. Efforts such as survival goal setting and the annual celebrations brought hope for survival. Despite the fact that many survivors were unwilling or unable to seek emotional support from their family for various reasons, they fully appreciated the significance of family harmony and therefore had been striving to facilitate family adaptation. It might be difficult for individual survivors to overcome the stigma attached to cancer due to the prevailing attitude of victim blaming and the common fallacy that it was contagious, but by being together as a group, they developed a sense of security which insulated them from social ostracism [32, 33]. For cancer survivors, information received from the support group could help meet their information-seeking needs and enable them to act rationally in decision-making. Similar conditions and mutual understanding amongst peers led to trust in each other in the interpersonal informational provision which provided immediate and direct support. Philanthropic lectures and quarterly brochures ensured that accurate but esoteric medical knowledge was disseminated in a way that even laypeople could understand. Cancer survivors need continuous and up-to-date information to help them manage their own illness, and our sample of survivors from Shanghai also expressed severe concerns about the nature, accessibility and credibility of available information. They need better medical information, for example, about ongoing risks (e.g. the risk of cancer recurrence or metastasis) and the importance of visiting a primary care provider. Tangible support was not what cancer survivors joined the group for. However, its timely assistance to the member
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in need reflected compassion and solidarity resonating within the group, and therefore, it should not be neglected. Social security programmes should be fully funded to support survivors who are suffering from severe financial hardship due to huge medical costs, insufficient insurance coverage and loss of earnings [34, 35]. Altruistic activities in public services generated good publicity and, more importantly, gave its members a new lease of life. By volunteering, they restored a sense of dignity and self-worth. Life was no longer preoccupied with fear and anxiety but a sense of contribution and dedication which would create a life worth living. The self-help movement is becoming a global phenomenon. The self-help groups which offer the venue for shared experience, emotional support and social learning can help constitute a social identity. Some studies in the West reported that giving help to others in a mutual help group predicted improvements in psycho-social adjustment, and giving advice was a unique predictor, and members were satisfied with the support they received and felt that the groups were effective [36–38]. Our results from SCRC confirm similar response patterns in selfhelp research in Western countries. Despite the impact the group had on its members, it was wrestling with thorny issues. It lived on limited donations. The lack of their own premises and funding impaired its proper functioning and limited its further expansion. The group was also constrained from full-fledged development due to ignorance by the community-based healthcare professionals. Therefore, diverting public health resources to local cancer support groups is a high priority for local government. Allocating government funding and policies to strengthen support and collaborating with non-governmental organisations are urgently needed [39]. Given that the SCRC has inadequate financial and professional support, providing more government support to the SCRC would be an inexpensive, efficient and effective way to provide more opportunities for cancer survivors to gain support from others facing similar circumstances.
Limitations However, the findings should be treated with caution. Although different affiliates of SCRC shared a common strategy of support activities, individual branches were granted considerable autonomy in formulating their own activity plans, and therefore, it was unlikely to have a full picture of the entire activity process from the eight participating affiliates. More active supporters of SCRC might have been recruited. The views of members with limited rehabilitation, disability or negative response were less likely to be incorporated because the participants from the
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eight participating affiliates were recruited of their own volition on the first-come, first-choice basis, which might undermine the credibility of the findings. Furthermore, it was possible that the participants knew each other because they were members of the same affiliates, which can lead to participants endorsing each other’s views and can cause an imbalance of opinion [40]. As a result, female participants in our study greatly outnumbered males, even though the sex ratio of cancer patients is nearly 1:1 across China [41]. Thus, with only a small number of male participants, it is difficult to infer whether our findings apply equally to women and men. Nevertheless, our sample reflected the proportions of women to men in the survivors’ clubs, and the comments provided were similar across both sexes.
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Conclusion The psycho-social support activities of SCRC provided psychological, informational and tangible support which not only met cancer survivors’ needs but also had influenced their lives. Public health resources and supportive policies should be in place to support local self-help cancer rehabilitation groups. Community-based psycho-social support activities of SCRC may have enormous potential as rehabilitation support activities for cancer survivors to improve their quality of life. The results of this study would prompt the public health bodies to provide further support for maintaining the SCRC and making it available to more people affected by cancer. Acknowledgments We would like to thank the Shanghai Cancer Rehabilitation Club for supporting this study. We are very grateful to all cancer survivors who willingly and generously gave their time. This study was supported by grants from the National Social Science Foundation of China (Award Number 13CSH076) and Shanghai Municipal Commission of Health and Family Planning (Award Number 20134068). Conflict of interest
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The authors declare no conflict of interest. 17.
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The experience of cancer survivors in community-based psychosocial support activities in Shanghai, China: a qualitative study Ji-Wei Wang1 • Tian-Rui Zhang1 • Qian Shen1 • Zhi-Qi Yang1 • Cong Liu1 • Si-Jia Chen1 • Jiang Li2 • Zheng-Nian Luo3 • Zheng-Ping Yuan4 • Jin-Ming Yu1
Accepted: 12 May 2015 Ó Springer International Publishing Switzerland 2015
Abstract Purpose Cancer survivors are often embroiled in various physical and psycho-social issues as a consequence of cancer diagnosis and treatment. Psycho-social support activities in the phase of rehabilitation were provided to enhance their quality of life. This study seeks to explore and understand their experience of engagement in Shanghai Cancer Rehabilitation Club (SCRC). Methods Sixty-eight participants attended eight semistructured focus group interviews. Data were transcribed verbatim, and thematic analysis framework was adopted for data analysis. Results The participants reported benefits such as psychological support, informational provision and tangible support in the activities. Public services were reported to have restored their dignity and enabled them to rediscover their own meaning of life. Participants also pointed out challenges on functioning and opportunity for development of SCRC. Ji-Wei Wang and Tian-Rui Zhang are both co-first authors for this article. & Ji-Wei Wang [email protected] Jin-Ming Yu [email protected] 1
School of Public Health and Key Laboratory of Public Health Safety, Fudan University, 130 Dong-An Road, Shanghai 200032, China
2
Jonathan and Karin Fielding School of Public Health, University of California, Los Angeles, 650 Charles Young Drive South, Los Angeles, California, USA
3
Shanghai Health Education Association, Shanghai, China
4
Shanghai Cancer Rehabilitation Club, Shanghai, China
Conclusions The psycho-social support activities of SCRC had influenced cancer survivor’s life. Public health resources and supportive policies should be in place to support local self-help cancer rehabilitation groups. Keywords Cancer survivors Psycho-social support activities Self-help group Quality of life Qualitative research
Introduction Cancer incidence in China increased from 184.81/100,000 in 1989 to 286.69/100,000 in 2008 as a result of growing public exposure to ageing population and industrial carcinogens [1, 2]. By contrast, a large number of cancerrelated deaths have been averted due to an improvement in tertiary healthcare delivery [3]. Extrapolating from current trends, the number of cancer survivors in China will rise correspondingly. Cancer survivors are people who were diagnosed with cancer and have been affected by the diagnosis ever since [4]. The vast majority of cancer patients experience one or more symptoms or side effects during and after treatment [5]. The most common side effects are pain, fatigue and emotional distress [6]. These and other side effects of chemotherapy and radiotherapy include appetite changes, eating problems, weight loss, constipation, diarrhoea, hair changes and immune suppression [7, 8]. Many of these side effects are also associated with surgery [9], as well as targeted and hormonal therapies [10]. This definition of cancer survivorship highlights the need for holistic intervention strategies which add psychosocial approaches to conventional clinical practice. Cancer survivors are often embroiled in following physical and
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psycho-social issues as a consequence of cancer diagnosis and treatment: (a) symptoms and side effects of chemotherapy [11], (b) fear of recurrence [12], (c) financial difficulty [13], (d) lack of adequate guidance on diet and physical activity [14], (e) adverse changes of familial and social relationships [15] and (f) inability to adjust life after cancer [16]. As discussed in previous studies, a myriad of psycho-social intervention approaches, such as cognitivebehavioural interventions [17], counselling [18], relaxation training [19], stress management and support group interventions [20, 21], have acted positively in alleviating psychological morbidity and improving the quality of life in cancer survivors. While there are a large number of cancer support groups in the West such as Macmillan Cancer Support in the UK which improves the lives of people affected by cancer by providing practical, medical, emotional and financial support [22] and the Cancer Support Community in the USA which provides a platform where survivors and their families are free to share their feelings [23], in China much effort has been focused on understanding the cause and treatment of cancer [24]. Oncological health care in the phase of rehabilitation has received scant research attention; health education is not available during the posttreatment, follow-up phase in China [24]. In Westernised countries, health education in the post-treatment phase is becoming more prominent. Furthermore, community-based cancer management programmes have not been properly implemented. Public awareness of cancer support groups remains low, and people are reluctant to seek help outside the family [25]. In Shanghai, a non-governmental organisation (SCRC) composed entirely of cancer survivors named Shanghai Cancer Rehabilitation Club (SCRC) has been flourishing. This self-help support group, founded in 1989, is registered with the Shanghai Bureau of Civil Affairs and functions as an independent body. With seventeen affiliates and 13,000 registered members in 2012, it has been working actively to reshape the lives of its members. They gather in local communities each month for lectures on the essentials of rehabilitation, workshops on lifestyle changes and a variety of leisure activities. The quarterly brochures are compiled, printed and allocated to each member at no charge. Meanwhile, there are many clinicians who voluntarily provided advice on medical issues. They voluntarily serve local communities to express gratitude for life. Board members pay regular home visits to cancer survivors with relapse or recurrence. Cancer survivors learn the recruitment information of SCRC through a variety of channels, such as TV, newspapers and website of SCRC. Any cancer survivor could voluntarily register as the member of SCRC without any payment.
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Since qualitative study has a pivotal role in generating rich, in-depth data which illuminate our understanding of complex social, behavioural and educational issues [26], the study aims to conduct a qualitative study to explore and understand their experience of cancer survivors who attend the SCRC.
Methods Due to the paucity of information about the experience of cancer survivors in community-based psycho-social support activities of SCRC, we used qualitative methodology to guide the investigation and explore the research questions. These methods allow for a deeper, richer understanding of the survivorship experience via open dialogue between the researcher and target population. Qualitative methods can enhance psycho-social research by identifying additional relevant variables, by generating new hypotheses and by strengthening conceptual validity [27–29]. Recruitment Recruitment information was disseminated to all seventeen affiliates of SCRC. Eight of them participated in the study and disseminated the information to their members. A total of sixty-eight members from different districts of Shanghai who had been attending SCRC for more than a half year were recruited on a first-come, first-choice basis. Informed consent was granted, and each participant was required to complete a questionnaire requesting socio-demographic information. Ethical approval to conduct this study (Protocol Number RB #2013-04-0450) was granted by the Medical Research Ethics Committee of the School of Public Health, Fudan University, in Shanghai, China. Data collection Between September and November 2013, eight focus groups were formed, each comprised of six to ten participants from the same affiliate group. Taking place at different community centres, the focus groups lasted from sixty to ninety minutes and were both video- and audiorecorded. At the beginning of each focus group, the participants were notified of the purpose of the study and encouraged to freely express their ideas. The focus groups were conducted primarily in Mandarin, but Shanghainese was allowed due to the variation in education. Relevant sections of the semi-structured focus group guide included: (a) needs and motives of receiving psycho-social interventions in the rehabilitation phase, (b) benefits of participating in SCRC, (c) memorable experiences with SCRC
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and (d) challenges the SCRC faces. Open-ended questions on these topics were asked to facilitate discussion and encourage objective and meaningful full response. Consent was obtained from each participant before the focus groups. There was no relationship established with participants prior to study commencement. The focus groups were conducted by JW in Mandarin and, if participants requested it, also in the local Shanghai dialect. Free-flowing conversation was encouraged with the interviewer ensuring that all questions had been discussed (QS). All discussions were recorded using handwritten notes, audio and video (TR and ZQ). At the end of each focus group, a gift valued 20 Chinese Yuan was given to each participant as a token of appreciation. Analysis A thematic analysis approach [30] was used. This is a systematic process of identifying patterns of meaning in participants’ accounts. The analysis comprised six steps: (1) familiarising with your data; (2) generating initial codes; (3) searching for themes; (4) reviewing themes; (5) defining and naming themes; and (6) producing the report. In accordance with good practice guidelines for qualitative research [31], ‘‘credibility checks’’ were undertaken throughout the analysis. This coding was collated to generate potential themes by TR, which was then checked against the original data by other authors (ZQ and QS). If these three authors had different opinions on a theme, a research meeting was held to discuss and decide whether it could be a theme amongst them. When all the themes, patterns and connections were determined, they were discussed and reviewed by all authors to ensure accuracy and form the final themes. The comparison was made between the transcripts of the different focus groups. These themes all were raised by all eight focus groups. Qualitative data analysis software was not used in our analysis. Six focus groups had been conducted when saturation was reached. No more new information emerged in the last two focus groups. For the fairness and accuracy of the study, verbatim quotations are presented to illustrate how the psycho-social intervention affected their lives. To minimise the risk of misinterpretation, which could alter the nuances of meaning, each quotation is inserted along with its original context. One author (TR) primarily translated the participants’ quotes from Mandarin to English. Then, another author (JL) who spoke both Mandarin and English checked the translation several times to ensure the greatest possible equivalence between the translation and source text. Anonymity is preserved to guarantee complete confidentiality for the subjects.
Results Basic demographic, socio-economic information and clinical diagnosis about the sixty-eight participants are summarised in Table 1. The participants reported benefits in the activities. Rewarding communities were reported to have restored their dignity and enabled them to rediscover their own meaning of life. Participants also pointed out challenges on functioning and opportunity for development of SCRC. ‘‘Perceived benefits’’, ‘‘rewarding communities’’ and ‘‘challenges’’ are the three themes which have been identified. Under the category of ‘‘perceived benefits’’, there are three subthemes: ‘‘psychological support’’, ‘‘informational provision’’ and ‘‘tangible support’’. There are no subthemes under the other themes. The themes, subthemes and sub-subthemes are summarised in Table 2. Table 1 Socio-demographic characteristics of the subjects (n = 68) Characteristics
No. (%)
Age range(years) 42–49
4 (5.88)
50–59
26 (38.24)
60–69
31 (45.59)
70–78
7 (10.29)
Gender Male
18 (26.470)
Female
50 (73.530)
Education Junior high school or low Senior high school
25 (36.76) 24 (35.29)
College or above
19 (27.96)
Tumour Breast cancer
31 (45.59)
Colorectal and rectal cancer
10 (14.71)
Lung cancer
7 (10.29)
Leukaemia
6 (8.82)
Lymphoma
4 (5.88)
Thyroid cancer
3 (4.41)
Liver cancer
2 (2.94)
Ovarian cancer
2 (2.94)
Tongue cancer
1 (1.47)
Nasopharyngeal cancer
1 (1.47)
Endometrial cancer
1 (1.47)
Monthly household income (denomination) Up to 2000
15 (22.06)
2001–3000
20 (29.41)
3001–4000
139 (19.12)
4001–5000
20 (29.41)
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Qual Life Res Table 2 Themes, subthemes and sub-subthemes from the focus group findings
Theme
Subtheme
Perceived benefits
Psychological support
Sub-subtheme Comfort Confidence Family adaptation Courage against stigma
Informational provision
Interpersonal information support
Tangible support
Cash assistance
Information from credible sources Applying for relief Rewarding communities Challenges
Perceived benefits Psychological support Comfort Some participants would rather seek comfort from their peers than from their closest relations. ‘‘We open our hearts to each other [the peers] about the trouble we’re having.’’ (Female, 60, breast cancer) ‘‘If you tell your family what’s going on, they’ll never understand, because they’ve never had it before.’’ (Female, 67, breast cancer) Confidence Experienced survivors, sometimes unintentionally, acted as positive role models who inspired great confidence. ‘‘I wasn’t the only one who’d got the disease. But [some survivors in SCRC] they’d lived another ten or twenty years, some even more. I could make it as well.’’ (Male, 62, colorectal cancer) One participant who had attempted suicide regained confidence in happy living. ‘‘Soon after the treatment, for many reasons, I was thinking up ways to end it all. After joining SCRC, I’m now outgoing and cheerful.’’ (Female, 45, endometrial cancer) Newly enrolled members were encouraged to set goals for life with hope to live on. ‘‘You’ve got to set goals! First, stay alive till your kid takes college entrance exam, then witness his marriage and next help him to bring up his kids.’’ (Male, 61, oral cancer)
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Annual celebrations were held for those who had recently achieved their 5- or 10-year survival. Survivors with such great honour humorously called the celebration their fifth or tenth birthday, expressing hope for their new lease of lives. ‘‘We think it’s [the fifth birthday] very important because it marks the start of a normal life.’’ (Male, 75, lung cancer) Family adaptation Practical communication skills to lubricate family relationships and family mediation to help resolve conflicts facilitated family adaptation. Therefore, survivors and their families would be supported psychologically when coping with the disease together. ‘‘Every week when I was going home from SCRC, they’d say to me, ‘when you get home, don’t forget to hug your family and say a big thank-you for all their love and care throughout the years.’’’ (Female, 42, breast cancer) ‘‘Sometimes, what she [his wife] said was a huge blow. When it happened, he’d come to us, with angry tears out of his eyes. We’d go to his house and talk.’’ (Male, 68, colorectal cancer) ‘‘Stay married and keep your vows for life. Don’t even think about divorce or remarriage. Remarriage is full of unknowns.’’ (Male, 68, colorectal cancer) Courage against stigma Individual survivors regained strength to fight against social discrimination and exclusion when survivors grouped together. ‘‘When I was taking exercise on the university campus, I couldn’t believe that people sniggered and
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pointed their fingers at me, without trying to hide anything. Feeling embarrassed, I quickly ran away. But being together we felt stronger. We didn’t care [what other people thought] anymore. No one seemed to get scared that easily.’’ (Female, 42, breast cancer) Informational provision Interpersonal information support Interpersonal relationships amongst peers made information support accessible to the members. One participant said information from the peers was helpful. ‘‘If I wasn’t well, I’d ask my friends [peers] which hospital to go to, which department to visit and which doctor to see.’’ (Female, 56, breast cancer) ‘‘What they [peers] said is at least ninety percent true.’’ (Female, 62, breast cancer)
Information from credible sources Philanthropic oncologists and nutritionists had been invited to deliver lectures which were popular and thought to be reliable. One participant said information from the lectures was credible. ‘‘It was usually very hard to register with any of these well-known doctors but here they gave us lectures for free. We have hardly missed them once.’’ (Female, 66, breast cancer) ‘‘I believe in these lectures, a big reason is they’re not planned to make money.’’ (Female, 65, ovarian cancer) In addition to the lectures, quarterly brochures were compiled, printed and allocated to each member at no charge. ‘‘We have rehabilitation brochures about how others have been fighting cancer. I usually go through pages and pages to learn from their experience.’’ (Female, 60, lymphoma) Tangible support
Applying for relief They informed neighbourhood committees annually of their peers most in need. ‘‘Every year we hand over a name list of our peers most in need to the neighbourhood committee. So they’ll get some money [from the committee] at the Spring Festival.’’ (Male, 54, gastric cancer)
Rewarding communities The participants said they had participated in various public services in the name of SCRC. ‘‘We presented special performances at old people’s homes.’’ (Female, 67, breast cancer) ‘‘5th December is International Volunteer Day, we’re planning to pick dry leafs and rubbish at People’s Park and along East Nanjing Road. We’ve been doing this for eight years.’’ (Male, 75, lung cancer) ‘‘At Changqiao community health centre, we showed them [patients] the way. We took their heights and weights, their blood pressure and blood sugar levels, and gave them eye tests as well.’’ (Female, 62, ovarian cancer) ‘‘Every year at Spring Festival, even when it was snowing, we bought food worth from eighty to a hundred yuan like breakfast cereals for people over seventy years old and carried our gifts to their homes.’’ (Female, 62, breast cancer) By offering public services, they restored their dignity and discovered new meaning of life. ‘‘When I came out of the house and got fully involved in the community, I realised that even though I’m a patient, I can still make a contribution to the society. I felt happy and cheerful.’’ (Male, 60, colorectal cancer) ‘‘Being in a good mood is essential for a good recovery and it’s the best medicine.’’ (Male, 60, colorectal cancer) ‘‘I’ll serve the community for the rest of my life.’’ (Female, 54, breast cancer) ‘‘Serve the community and make no demands on it.’’ (Male, 75, lung cancer)
Cash assistance These participants raised money amongst themselves to help their peers in need. ‘‘In his hardest time, we raised over a thousand yuan and went for a home visit.’’ (Male, 75, lung cancer)
Challenges The participants said the SCRC’s functioning and expansion were constrained by a lack of donations and a lack of their own premises.
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‘‘We always recruit new members. What can we do for them? Everything needs money.’’ (Female, 65, ovarian cancer) ‘‘We don’t have our own activity place. We can only sit on an empty stone bench in People’s Park if it doesn’t rain.’’ (Female, 50, breast cancer) However, when asked about whether any communitybased healthcare professionals have been involved in the group intervention, one participant reported being ignored and expressed her dissatisfaction. ‘‘They only call me once a year to see if I’m still alive.’’ (Female, 56, breast cancer)
Discussion SCRC was reported to have provided psycho-social support activities including psychological, informational and tangible support to cancer survivors which not only met their needs but also had influenced their lives. The interaction between group members not only brought comfort but also increased confidence. Efforts such as survival goal setting and the annual celebrations brought hope for survival. Despite the fact that many survivors were unwilling or unable to seek emotional support from their family for various reasons, they fully appreciated the significance of family harmony and therefore had been striving to facilitate family adaptation. It might be difficult for individual survivors to overcome the stigma attached to cancer due to the prevailing attitude of victim blaming and the common fallacy that it was contagious, but by being together as a group, they developed a sense of security which insulated them from social ostracism [32, 33]. For cancer survivors, information received from the support group could help meet their information-seeking needs and enable them to act rationally in decision-making. Similar conditions and mutual understanding amongst peers led to trust in each other in the interpersonal informational provision which provided immediate and direct support. Philanthropic lectures and quarterly brochures ensured that accurate but esoteric medical knowledge was disseminated in a way that even laypeople could understand. Cancer survivors need continuous and up-to-date information to help them manage their own illness, and our sample of survivors from Shanghai also expressed severe concerns about the nature, accessibility and credibility of available information. They need better medical information, for example, about ongoing risks (e.g. the risk of cancer recurrence or metastasis) and the importance of visiting a primary care provider. Tangible support was not what cancer survivors joined the group for. However, its timely assistance to the member
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in need reflected compassion and solidarity resonating within the group, and therefore, it should not be neglected. Social security programmes should be fully funded to support survivors who are suffering from severe financial hardship due to huge medical costs, insufficient insurance coverage and loss of earnings [34, 35]. Altruistic activities in public services generated good publicity and, more importantly, gave its members a new lease of life. By volunteering, they restored a sense of dignity and self-worth. Life was no longer preoccupied with fear and anxiety but a sense of contribution and dedication which would create a life worth living. The self-help movement is becoming a global phenomenon. The self-help groups which offer the venue for shared experience, emotional support and social learning can help constitute a social identity. Some studies in the West reported that giving help to others in a mutual help group predicted improvements in psycho-social adjustment, and giving advice was a unique predictor, and members were satisfied with the support they received and felt that the groups were effective [36–38]. Our results from SCRC confirm similar response patterns in selfhelp research in Western countries. Despite the impact the group had on its members, it was wrestling with thorny issues. It lived on limited donations. The lack of their own premises and funding impaired its proper functioning and limited its further expansion. The group was also constrained from full-fledged development due to ignorance by the community-based healthcare professionals. Therefore, diverting public health resources to local cancer support groups is a high priority for local government. Allocating government funding and policies to strengthen support and collaborating with non-governmental organisations are urgently needed [39]. Given that the SCRC has inadequate financial and professional support, providing more government support to the SCRC would be an inexpensive, efficient and effective way to provide more opportunities for cancer survivors to gain support from others facing similar circumstances.
Limitations However, the findings should be treated with caution. Although different affiliates of SCRC shared a common strategy of support activities, individual branches were granted considerable autonomy in formulating their own activity plans, and therefore, it was unlikely to have a full picture of the entire activity process from the eight participating affiliates. More active supporters of SCRC might have been recruited. The views of members with limited rehabilitation, disability or negative response were less likely to be incorporated because the participants from the
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eight participating affiliates were recruited of their own volition on the first-come, first-choice basis, which might undermine the credibility of the findings. Furthermore, it was possible that the participants knew each other because they were members of the same affiliates, which can lead to participants endorsing each other’s views and can cause an imbalance of opinion [40]. As a result, female participants in our study greatly outnumbered males, even though the sex ratio of cancer patients is nearly 1:1 across China [41]. Thus, with only a small number of male participants, it is difficult to infer whether our findings apply equally to women and men. Nevertheless, our sample reflected the proportions of women to men in the survivors’ clubs, and the comments provided were similar across both sexes.
5.
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Conclusion The psycho-social support activities of SCRC provided psychological, informational and tangible support which not only met cancer survivors’ needs but also had influenced their lives. Public health resources and supportive policies should be in place to support local self-help cancer rehabilitation groups. Community-based psycho-social support activities of SCRC may have enormous potential as rehabilitation support activities for cancer survivors to improve their quality of life. The results of this study would prompt the public health bodies to provide further support for maintaining the SCRC and making it available to more people affected by cancer. Acknowledgments We would like to thank the Shanghai Cancer Rehabilitation Club for supporting this study. We are very grateful to all cancer survivors who willingly and generously gave their time. This study was supported by grants from the National Social Science Foundation of China (Award Number 13CSH076) and Shanghai Municipal Commission of Health and Family Planning (Award Number 20134068). Conflict of interest
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The authors declare no conflict of interest. 17.
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