Support Groups For Cancer Patients Research Articles

Setting up breast cancer patient support groups at a breast unit, and their role in survivorship

Setting up breast cancer patient support groups at a breast unit, and their role in survivorship

Patient Preparation and Radiation Protection Guidance for Adult Patients Undergoing Radioiodine Treatment for Thyroid Cancer in the UK

Radioactive iodine is a highly effective treatment for thyroid cancer and has now been used in clinical practice for more than 80 years. In general, the treatment is well tolerated. However, it can be logistically quite complex for patients due to the need to reduce iodine intake and achieve high levels of thyroid-stimulating hormone prior to treatment. Radiation protection precautions must also be taken to protect others from unnecessary radiation exposure following treatment. It has been well documented by thyroid cancer patient support groups that there is significant variation in practice across the UK. It is clear that some patients are being asked to observe unnecessarily burdensome restrictions that make it more difficult for them to tolerate the treatment. At the instigation of these support groups, a multidisciplinary group was assembled to examine the evidence and generate guidance on best practice for the preparation of patients for this treatment and the management of subsequent radiation protection precautions, with a focus on personalising the advice given to individual patients. The guidance includes advice about managing particularly challenging situations, for example treating patients who require haemodialysis. We have also worked together to produce a patient information leaflet covering these issues. We hope that the guidance document and patient information leaflet will assist centres in improving our patients' experience of receiving radioactive iodine. The patient information sheet is available as Supplementary Material to this article.

Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies.

Citizen science (CS) approaches involving non-professional researchers (citizens) as research collaborators has been used infrequently in health promotion generally and specifically, in cancer prevention. Standardized CS approaches may be especially useful for developing communication interventions to encourage families to consider cancer genetic services. We engaged survivors of ovarian cancer and their close relatives as CS collaborators to collect and help interpret data to inform content for a website, printed invitation materials, and short-message reminders. We applied an implementation quality framework, and posed four research questions regarding the feasibility of CS: recruitment, data collection, data quality and evaluation of the experience. CS members were recruited through three networks: clinical sites, local and national cancer support organizations, and online ovarian cancer patient support groups. The professional research team operationalized theory-aligned CS tasks, five data collection options, question banks/scripts for creating surveys, structured interviews, online training and ongoing support from research coaches. 14 CS members agreed to the 12-week and 20-hour commitment for an honorarium. CS members opted to do both qualitative and quantitative assessments. CS members collected 261 surveys and 39 structured interviews. The largest number of surveys were collected for Task 1 (n = 102) to assess survivors' reactions to different possible options for motivating survivors to visit a study website; 77% of this data were complete (i.e., no missing values). Data collected for tasks 2, 3, 4, and 5 (e.g., assessment of survivors' and relatives' respective communication preferences) ranged from 10 to 58 surveys (80% to 84% completeness). All data were collected within the specified time frame. CSs reported 17 hours of work on average and regarded the experience positively. Our experience suggests that CS engagement is feasible, can yield comprehensive quantitative and qualitative data, and is achievable in a relatively a short timeline.

PL02.06 Patient-Directed Innovation, Research and Clinical Trials

PL02.06 Patient-Directed Innovation, Research and Clinical Trials

COVID-19: A time of heightened uncertainty for cancer patients and increased need for psychosocial support

COVID-19: A time of heightened uncertainty for cancer patients and increased need for psychosocial support

Unmet Needs of Rare Cancer Patients and New Initiatives of RCJ

Abstract Background For rare cancers, it has been difficult to develop drugs due to the small patient population. Methods Rare Cancers Japan (RCJ) members studied cancer patient support groups in the EU and USA to learn from their experience in cancer drug development. Also, RCJ members participated in clinical trial workshops organized by the European Organization of Research and Treatment for Cancer (EORTC) for patients and caregivers interested in clinical trials to learn what is expected of patient support group leaders. Results In Europe and the United States, the patient support groups actively participate and support cancer research and clinical trials from their early stages, and there is a mechanism to review research results. In addition, multi-stakeholder conferences are held regularly to discuss various issues related to the latest discovery in research as well as clinical trials. Patient groups are engaged through a program such as Patient Public Involvement (PPI) in UK, from early stages of clinical trials. Conclusions In Japan, in the area of new drug development for rare cancers, further cooperation is needed among key stakeholders, such as patient groups, academic societies, pharmaceutical companies, regulatory agencies across national borders in Asia. On this First Rare Cancers in Asia Symposium, Rare Cancer Japan, a network of Japanese rare cancer patient group, would like to discuss the unmet needs of Japanese rare cancer patients, and together discuss what new initiatives are needed in Japan and Asia to quicken the delivery of new drugs to rare cancer patients.

From Diagnosis to Survivorship: Using Cancer Support Group as an Advocacy and Support Platform for Cancer Care in Nigeria

Background and context: Cancer diagnosis comes with a lot of challenges. It is a huge burden to the patient, family, and community; subjecting them to financial crisis, emotional distress, dearth of self-esteem, and physiologic deformations. From a patient's perspective, treatment of cancer is complex and complicated with the weak healthcare system, attitude of healthcare workers, lack of insurance, lack of trust to orthodox medicine and stigmatization. Cancer patients are constantly seeking solace, people to listen to them and people who understand their state of mind and can be a source of inspiration. Studies have shown that peer cancer support group results in psychological benefit and improve relationships. The 2016 World Cancer Congress patient's pavilion inspired us to start up a cancer support group for cancer patients, survivors and caregivers known as Abuja Breast Cancer Support Group (ABC-SG). The cancer support was primarily founded for only breast cancer patient, survivor, caregivers and for peer support; as at today the group has transited from being patient group to also being an advocacy group with a number of activities and programs aimed at propelling all cancer patients from diagnosis to survivorship. Aim: To disseminate impact of establishing a breast cancer support group in Abuja and how it has helped cancer patients/survivors inspire each other while engaging policymakers to make cancer control a national health priority in Nigeria. Strategy/Tactics: The study reviewed the 1-year activities of the ABC-SG and surveyed the impact of the peer support to the 36 members of the group. Program/Policy process: As part of Project PINK BLUE SPARC MBC activities, ABC-SG was supported in different activities and programs targeted at peer support and policy change advocacy. Outcomes: The cancer support group have become a point of networking and inspiration for several patients and survivors; hence, more cancer patients are beginning to come out from their closest to identify with the support and make their diagnosis public. What was learned: There is an improvement in psychological states of patients and their physiologic understanding of their diagnosis by meeting together, networking, and interaction through social media. Our qualitative finding also showed that cancer patients needs platforms to speak out, to advocate and to change the course of cancer care if provided with all the necessary training and support.

From “Being Helped” to “Mutual Help”: Effectiveness Evaluation on Self-Help Group

Background: In the field of cancer caring, ACS is best known as self-help community among patients. Reach to Recovery, a sharing program between senior breast cancer patients and new comers, for example, helps new patients to understand the treatment process in a relatively more moderate way. Additionally, sense of control and adapted self-image are regained through the sharing between senior and new patients. In 2014, researchers managed to arrange a support group for cancer patients named “Going onto the Next Stop”, a program in which 9 consistent members meet five times as a group for 5 weeks for a total of 16 hours. At the last meting, one member suggested to form an online chatting group named “Forever-Salute”, which means “getting together healthily forever”. With “Forever-Salute”, members hope to create regular meetings as a powerful pivot to each other, thus supporting all members to transform from being helped to mutual help, from receiving help from social workers to helping each other. Aim: To understand the function and meaning to members´ daily lives. Methods: The method for data collecting is focus group. Results: The research shows that empathy between cancer patients can be more easily perceived than that of their family or friends. The program excelled what was initially expected when we see how those patients responded in the group and how they lived out their lives. In the program, talking freely and keeping each other company are important principles. They were also expected to discuss more about how they adapt their lives in the future and topics that might seem as positive. Aside from encouraging passive patients to be more active, they also wish to include more members who are in need. Conclusion: Researchers recommended deeper sharing to be included based on trust among group members, so as to increase mutual merging in the future to obtain more support from each other. In addition, professional intervention is not always necessary to existing self-help communities. It takes one's experience and tactical evaluation to determine when and how much to intervene. When a group transforms from a professional-guided self-help community to an independent one, the transition of the professional leader to simply as a noncancer-participant plays a vital part. During the process the authority is returned and shared between group members, which means making decisions for themselves, deciding how they interact and how they are assigned to certain tasks; and the awareness of sharing leadership in a self-help community is highlighted. Further, professional workers also need to be aware of keeping the group flexible and open, making sure that questions are allowed and power in between members are in a dynamic flow to ensure autonomy and mutual support in a community.

Home Palliative Care for Advanced Cancer: PC Can Be Introduced at Diagnosis or at Relapse in Thai Society, Independent of Oncology Service

Background: Thailand is a resource-limited country with universal health care. Cancer services are available for everyone for free, but the system has been overloaded due to limited number of qualified specialist physicians, nurses, radiology technicians, and growing demand from ageing population. Patients with advanced cancer are often not referred to a palliative care (PC) service until multiple treatment failure. Aim: To provide a better access to PC, we initiated an independent palliative care counseling and home service, focusing on families of patients with advanced cancer. Methods: The families of patients with advanced cancer were referred to our home palliative care service through cancer patient support groups, self-referral or from other physicians. Eligibility for PC was guided through a Thai national guideline of cancer treatment as well as by NCCN guideline. Early stage cancer were excluded from the service and referred to oncology service of patient's choice. For each family, we arranged a family meeting/counseling session at patient's home or a designated place and introduce palliative care as well as cancer therapy options. If the patient choose palliative care, then we provide home PC. Patients are followed at home by home visits, and continually communicated online and by phone. Family members visits palliative clinic for morphine and other medications. Results: In the first 3 years of operation, 53 adult patients with advanced or recurrent cancer and their families were counseled. Fifty chose home palliative care service, exclusively (30) or along with a hospital oncology service (20), while 3 patients preferred life-prolonging cancer therapy. The average age (±SD) of patients were 60 (±16) years. The most common cancers were stage IV or metastatic breast (7), lung (6), colorectal (6), and leukemia/lymphoma (6). The median survival time of this PC cohort was 3.1 months, with 16 (32%) living > 6 months, and 10 (20%) > 1 year. Of 36 patients who had died, 22 (61%) died at home, 13 (36%) at a local hospital, and 1 (3%) at a cancer center. Conclusion: For advanced cancer patients, palliative care can be introduced early and efficiently by PC team and most people would prefer PC. PC counseling may serve as an entry point to cancer care system. For patients who choose early palliative care, it can reduce burden on the existing busy oncology service, while providing satisfaction on patients and family.

The Design and Implementation of Cancer Patient Support Groups in Rural Haiti

Background: In Haiti, cancer is associated with myths that have traumatic effects on patients and families. Cancer diagnoses are drivers of socioeconomic change, with psychological repercussions for an impoverished population. Aware of this reality, the Oncology Service at University Hospital of Mirebalais (HUM) created a dedicated psychosocial team, composed of a social worker, her assistant and a psychologist. Care is provided to patients and families through: individual counseling, support groups, outreach activities, home visits, and mental health consults. This abstract focuses on patient support groups (SG). SGs act as vectors of information and training that are capable of breaking myths, and accompanying patients on their cancer journey. Aim: The primary aim of SGs is to create a space for patients to participate in education and peer counseling. During sessions, the team encourages expressions of emotions and experiences in relation to the disease and its repercussions on patients and caregivers. These discussions encourage participant solidarity and strengthen compliance to treatments. SGs, however, are not static and services are continuously improved by collecting feedback. Methods: To address the psychosocial needs of each cancer patient, SGs were developed with specificity. Patients are categorized in SGs according to the medical treatment they are receiving. Other SGs offered, focus on caregiver experience. SGs have about 12 participants, last 120 minutes and are held in a private space in HUM. In general, discussions relate to patient experience, side effects, relationship implications, and socio-economic impacts. Across all SGs, principles for speaking are negotiated and are always at discretion of participants. Results: The HUM team has provided SG services since 2013. SGs are held often and the majority of oncology patients participate. In 2017, we held 30 SGs with over 380 participants. Therapeutic alliances have improved relationships: patient–patient, family–patient, and patient-clinician - fostering interdisciplinary collaboration. However, all SGs must be performed the same day as the medical appointment due to socio-economic difficulties that can create logistical challenges. Patient needs are also fluid and flexibility is key as SGs evolve. Conclusion: SGs play a critical role in comprehensive cancer care, particularly in Haiti where there are severe social implications for patients. Mental health of cancer patients is critical and SGs are an impactful way to address this need. Arranging SGs by medical treatment, the model used at HUM, is adaptable to other low-income settings. Every SG is different and facilitators approach each session without preconceptions, yet diligent to gather feedback. SGs provide critical information to clinicians about social determinants and implications of cancer diagnoses in Haiti. In the future, we hope to do robust qualitative analysis of SGs, using feedback from cancer patients at HUM.

A qualitative study on mindfulness-based stress reduction for breast cancer patients: how women experience participating with fellow patients.

PurposePeer support groups for cancer patients show mixed findings regarding effectiveness on psychological wellbeing. When embedded in a psychosocial intervention, such as mindfulness-based stress reduction (MBSR), peer support might be of more benefit to participants. This study is a qualitative exploration of how women with breast cancer experience the possible benefits and impediments of participating with fellow patients in an MBSR training.MethodsFive focus groups (n = 37) and three individual interviews (n = 3) were conducted with breast cancer patients who participated in MBSR. The qualitative data were analysed with the constant comparative method in order to develop a grounded theory.ResultsWe could identify a process where at the start of MBSR, patients experienced anticipatory fear for facing the suffering of fellow patients, especially for those who could not be cured anymore. In most women, this fear gradually subsided during the first two sessions. The atmosphere in the MBSR training was experienced as safe and supportive, providing a context where participants could connect with and trust one another. In turn, this facilitated participants to learn from one another.ConclusionsOur findings do not only show that the peer group facilitates the learning process in MBSR, but the MBSR also seemed to provide an atmosphere that promotes the experienced social support in participants. In addition, the results emphasize the importance for mindfulness teachers to acknowledge and explore the fear for facing fellow patients in the group. Future research should examine whether the results are generalizable to patients with other cancer types.

Content analysis of postings in a stomach cancer survivor and caregiver support group on Facebook.

223 Background: Patients diagnosed with cancer are increasingly turning to patient created social media groups to connect with others suffering from similar conditions. These groups allow sharing of information and support between their members, without involving medical or mental health professionals. This study examines the content of communications within one of these groups in order to identify the needs these groups are addressing, and in order to explore implications for mental health. Methods: This study focuses on a single Facebook group for stomach cancer patients and caregivers which has grown from 239 members a year ago to 1,128 members now and which has been operating for about four years. Two thirds of members are cancer patients, and the rest are caregivers. About 75% of members are from the US. The age range is 40-79, with a mean of 54. Members are 55% women, and 80% are middle class. Most members have been in the group for six to twelve months. The site averages about five original posts and about 50 responses a day. 100 consecutive posts were assigned to one of 12 pre-selected content categories. Results: Primary purpose of each of 100 consecutive posts (1) Sharing updates on their condition: 14 (2) Questions about treatment side effects: 13 (3) General requests for information: 13 (4) Requests for support or prayers: 11 (5) Sharing good news: 11 (6) Welcoming new members: 11 (7) Giving general support: 9 (8) Announcing a death: 5 (9) Sharing information about new treatments: 5 (10) Sharing humor: 4 (11) Sharing bad news: 2 (12) Asking "How are you?": 2. Conclusions: This Facebook group served many of the same functions that are served by face to face support groups for cancer patients. Members routinely shared intimate details with each other, and they routinely asked questions about their illness that they could not get answers to anywhere else. Leaderless Facebook groups such as this one are an important, and little studied, psychological resource for patients suffering from cancer.

No Talent Required: Using Drama Therapy in Support Groups for Cancer Patients

Objectives: It is well known that a cancer diagnosis impacts a person’s mental, emotional and spiritual well-being as well as their body. Many patients and caregivers seek out support groups to bolster themselves in this challenging time. While talk and peer-based groups can provide validation and understanding, drama therapy can provide a beneficial approach for support groups.Methods: Drama therapy is a gentle form of creative therapy between a trained therapist and one or more clients with a specific therapeutic intention. It uses action methods (such as role play, storytelling, improvisation, writing, and projective tools) to facilitate creativity, imagination, learning, insight and growth. Drama therapy provides a creative-expressive basis for support groups within a humanistic framework.Results: Drama therapy-based support groups encompass the patient’s holistic experience and address all aspects of their cancer experience in order to provide meaning. In addition to validating participants’ perspectives, they help participants to come to terms with their experiences and emotions, to gain insight into their responses and to learn new ways of dealing with them. Drama therapy utilizes the concepts of distance, projection and witnessing to allow clients to explore challenging issues in a safe – and potentially playful – way. It is a flexible approach that can be adapted to the specific needs of participants and therefore is well equipped to serve a broad spectrum of issues and concerns in varying and supportive ways.Conclusions: This poster will highlight some of the theory behind drama therapy-based support groups to show the advantages these groups entail. It will also showcase various creative interventions that have been used with cancer patients.

The use of religious/spiritual coping among patients with cancer undergoing chemotherapy treatment

to investigate the use of religious/spiritual coping among people with cancer undergoing chemotherapy. a quantitative, descriptive and cross-sectional study of 101 patients undergoing intravenous chemotherapy in an oncology outpatients center in a public hospital in Minas Gerais, made in the first semester of 2011. For data collection, an interview was held, using a questionnaire for characterizing the sample and the Brief Spiritual/Religious Coping Scale. all subjects made use of religious/spiritual coping (mean=3.67; sd=0.37); the younger individuals, those with no religion and those who consider spiritual support unimportant tend to use coping negatively; individuals who would like to receive spiritual support and who participate in support groups for cancer patients, on the other hand, use coping positively. the study reinforces that religious/spiritual coping is an important strategy for coping with cancer, and contributes to an understanding of the same as a useful tool for spiritual care.

Lessons Learned in Developing a Culturally Adapted Intervention for African-American Families Coping with Parental Cancer

Prior clinical research supports the effectiveness of cancer support groups for cancer patients and their families, yet African-American families continue to be underrepresented in cancer support groups and in cancer clinical research studies. In order to fill this gap, we developed and evaluated a culturally adapted family support group for African-American families coping with parental cancer. We encountered unexpected challenges in overcoming barriers to recruitment, partnering with oncology providers, and building trust with the African-American community and African-American families coping with parental cancer. We describe actions taken during the two phases of this study and lessons learned along the way about recruiting and engaging African-American families in cancer support group studies, partnering with oncology providers, networking with the African-American community, and the importance of demonstrating cultural sensitivity to overcome the understandable historical legacy of mistrust.

Cancer Patients Have Much to Gain From Psychiatric Treatment

Cancer Patients Have Much to Gain From Psychiatric Treatment

Facilitating online support groups for cancer patients: the learning experience of psycho‐oncology clinicians

Counsellor familiarity and engagement with technology-mediated communication represents an important factor in the ability to implement support programs to cancer patients. This study describes the experiences of a cohort of expert psycho-oncology counsellors who learned to facilitate online support groups (OSGs) and identifies the important elements of their learning experience that led to their engagement. PROCEDURE AND METHOD: Six psycho-oncology counsellors were trained to facilitate OSGs and later facilitated OSGs in their own practice context. They subsequently reflected on and discussed their experiences with OSGs over time: in a panel discussion within 6 months of training, and in two focus groups. A participatory method was used to describe and interpret key elements of the learning process. Three themes of the counsellors' learning experience emerged: immersion in experiential learning, perceptions of clinical value and benefit, and overcoming challenges with adapted skills. Counsellors described components of their experiential learning: co-facilitating online cancer support groups with an expert, debriefing online, and participating in an online peer supervision group, as critical to their becoming engaged. Despite initial challenges, the counsellors learned new skills, and adapted known clinical skills, to the text-only environment. With appropriate training and practice over time, counsellors familiar with delivering face-to-face support groups to cancer patients became skilled and engaged in leading OSG's for cancer patients. Learning to facilitate OSGs shifted practice by significantly expanding the scope of services they were able to provide their patients and has implications for expanding access to support services.

A Qualitative Study of an Internet-Based Support Group for Women with Sexual Distress Due to Gynecologic Cancer

Internet-based support groups for cancer patients have been studied extensively; very few have focused on gynecologic cancer. We pilot-tested a web-based support group for gynecologic cancer patients and assessed women's perceptions of the intervention. Twenty-seven gynecologic cancer patients were randomized to an immediate intervention or a waitlist control group. Women participated in a 12-week, web-based support group focusing on sexuality-related topics. Semi-structured interviews were conducted to investigate the feasibility and efficacy of the intervention. Women reported benefits to participating in the intervention, including receiving support from group members and moderators, increased emotional well-being, improved feelings of body image and sexuality, and comfort in discussing sexuality online. Web-based support groups are both feasible and accepted by gynecologic cancer patients with psychosexual distress. The online format provided women with easy access to the support group and anonymity in discussing psychosexual concerns. Women with gynecologic cancer may benefit from participating in online support groups which provide an environment of relative anonymity to discuss psychosexual concerns.

Differences among breast and prostate cancer online support groups

Online support resources have become viable alternatives to face-to-face support groups for cancer patients. It is important to understand how individuals make use of such online support resources and what, if any, differences exist between groups. A content analysis was conducted on 3203 posted messages to prostate and breast cancer support sites on Google Groups and WebMD. Overall, post-treatment survivors were the most common posters followed by spouses; however, the proportion of posters varied by site. For both groups, messages of support were most frequent. However the type of support varied by cancer type. Support messages on the breast cancer sites were mostly offers of emotional support. Conversely, messages of support on the prostate cancer sites focused on informational support. Messages of emotional well-being and medical-related comments were next most common on the breast cancer sites, whereas medical issues and sexual intimacy were on the prostate cancer sites. Overall, these findings identify several key differences in the use and benefits of online support sites for breast and prostate cancer.

What is the ideal support group? Views of Australian people with cancer and their carers

To explore views on the ideal structure and process of support groups for cancer patients. From 184 cancer support groups identified in NSW, Australia, 50 were randomly selected within strata of five variations in group structure: homogenous versus heterogenous participants; urban versus rural; community versus hospital setting, leader with cancer experience or not; and with professional training or not. Four hundred and seventy-six group members completed a questionnaire. Participants valued being with others like them, gaining information about cancer and having an effective leader. Groups were seen to be currently failing people from culturally and linguistically diverse backgrounds, and links with oncology health professionals were inadequate. Few clear preferences for structure were expressed, except for the non-exclusion of those with a poor prognosis. Patients tended to prefer the structure of their own group, but patients longer since diagnosis, those with better informal support and carers preferred to meet in the community setting, while men with prostate cancer preferred a medical setting. Some suggestions for group structure and process can be made on the basis of these findings; however, individual variation suggests that a needs analysis should be made by individual groups.