Patients’ Perspectives on Health Information Seeking Throughout the Colorectal Cancer Experience: A Qualitative Study

BACKGROUND: With limited research on how patients with colorectal cancer (CRC) access and apply health information, our objective was to explore patients’ perspectives on health information seeking.METHODS: We invited participants from Canada, 18 years of age or over, to participate. Semi-structured, open-ended interviews were conducted over the telephone and transcribed verbatim. Transcripts were analyzed using an interpretive description approach.RESULTS: Among 34 participants with CRC, 18 were females (52.9%). Twenty (58.8%) were diagnosed with CRC on or after the age of 50 years and 14 (41.2%) before the age of 50 years. Sixteen (47.1%) were diagnosed with colon cancer, 12 (35.3%) with rectal cancer and 6 (17.7%) with cancer at both sites. We identified three themes that reflect participants’ health information seeking in terms of perspectives on sources primarily sought. These themes and specific sub-themes that suggest areas for improvement are: 1) perceived expectations of physicians – which included sub-themes of varied interactions and relationships with physicians and feeling abandoned after active treatment; 2) importance of personal and social connections – which included the sub-theme of experiencing gaps with current in-person cancer support groups; and 3) use of the Internet for information – which included the sub-theme of using credible Internet sources.CONCLUSION: Our study identified gaps with respect to availability, access to, or knowledge of resources for CRC. Understanding how individuals with CRC seek health information have implications for informing interactions with patients and developing resources across the continuum of CRC care.

The Forms and Uses of Acquired Prostate Cancer Expertise Among Prostate Cancer Survivors

This article examines men’s prostate cancer experiences through the lens of patient expertise. Qualitative interviews were conducted with 29 men treated for prostate cancer, recruited from two prostate cancer support groups (PCSGs) in the South-East of England. Different forms of expertise, as classified by Collins, were found to be possessed by these men. How these different forms of expertise were acquired, used, and shared with others are explored, and a concept of communal licensing is posited to better understand these activities. The acquisition and usage of these different forms of expertise, through the employment of moral discourses that emphasise responsibility for one’s own health, are found to serve to blur the boundaries between lay person and expert.

Review of the Nutrition Guidance Irish Healthcare and Charitable Organisations and Cancer Centres provide for Cancer Patients and Cancer Survivors.

Background: A cancer diagnosis presents a potential teachable moment however, evidence-based information, guidance and support all need to be available in order to capitalise on this. Health care professionals report providing little advice in this area. Previous work has shown that cancer survivors tend to prefer statutory and recognised charitable centres and groups. It is therefore important to determine what nutrition information is available on these websites as otherwise this group may turn to less reliable sources of informationObjective: To determine the availability, quality and readability of nutrition information for cancer patients and survivors from Irish healthcare organisations, cancer charity and support groupsMethods: Organisations were located using three search strategies: 1) We first sought to identify any nutrition information for cancer patients or survivors provided by the Irish Health Service Executive (HSE), 2) To identify suitable organisations the word “cancer” was searched for in the search engine of the Benefacts (official register of charitable organisations) website. The ten largest organisations were included and 3) an additional internet search was conducted using the terms ‘cancer charities Ireland’ and ‘cancer support groups Ireland’. The first two pages of results were assessed. The quality of the nutrition information was determined using the adapted IPDAS tool. Readability testing was carried out on the websites where nutrition information was available usingResults: A total of 32 websites were assessed. Of these only five provided any form of nutrition guidance for cancer patients with three of these five also providing some guidance for cancer survivors. The guidance provided centred on guidelines and lacked practical strategies for their implementation. The quality of the information provided ranged from 19.5–29 out of a maximum of 40. The readability level required to understand the information ranged from 11–17 years of age.Conclusion: There is a need for nutritional guidance to be provided by national health and cancer related organisations and for this information to be specific to the cohort e.g. patient vs survivor. There is also a need for practical strategies to make the translation of guidelines into practice easy for patients and survivors.

Why Don’t Cancer Survivors Attend Cancer Support Groups in Toronto

Background: Cancer is the leading cause of death for both men and women in Canada. Professionally or nonprofessionally led support groups have been recognized as a significant source of psychosocial support for cancer survivors. However, the participation rate was low and reasons for leaving a support group were not explored fully. Purpose: To explore the reasons why Chinese cancer survivors left or did not attend a cancer support group in Toronto. Methods: In-depth individual qualitative interviews were conducted. Five Chinese cancer survivors participated in in-depth interviews. Colaizzi’s phenomenological method was used to analyze the interview data. Results: Four themes were extracted from the in-depth interviews: “not fit in”, “not satisfied with the information provided”, “tried to be a normal person”, and “lack reliable transportation and convenient scheduling”. Conclusion: Cancer support groups can improve cancer survivors’ physical and psychosocial outcomes. The services can also help cancer survivors to obtain health related information and connect with professionals and peers. In recognizing the reasons why cancer survivors left support groups, health-care providers need to evaluate and be aware of the needs and difficulties for cancer survivors to attend support groups. They should match cancer survivors with appropriate groups. More language-friendly groups need to be launched, so cancer patients can easily find a suitable one from their neighborhood.

Delivering More Effective Lung Cancer Support Groups: Applying Best Practices From the United States, United Kingdom, and Australia to Strengthen Skills and Inspire Facilitators

Background and context: Globally, 1.8 million people are diagnosed with lung cancer annually. Compared with other cancers, lung cancer patients experience higher levels of distress and greater unmet physical and emotional needs. A significant unmet need is social support. Face-to-face support groups can meet this need and may also may increase feelings of control and decrease distress. While lung cancer patients tend to prefer lung cancer-specific over general cancer groups, for many reasons these groups can be challenging to start and maintain. As a result, there are not enough groups available to meet the need. Aim: To provide guidance to those with struggling lung cancer groups, facilitators on three continents were surveyed to better understand their challenges and elicit creative ideas, collect practical tips and gather best practices for starting and maintaining successful lung cancer support groups. Strategy/Tactics: To understand the experiences of lung cancer facilitators, direct feedback was needed. To identify facilitators, member organizations of the Global Lung Cancer Coalition (GLCC) were tapped. Comprised of 37 charity organizations, GLCC is the international “voice” of the lung cancer community. Three GLCC organizations (one each from the United States-US, United Kingdom-UK and Australia-AUS) that either directly offer lung cancer support groups or manage networks of groups, agreed to participate. Program/Policy process: A 21 question online survey was sent to 131 support group facilitators, 7 in AUS, 42 in the UK and 82 in the US. Questions included length of time the group had been running, how often it met, average number of participants and other group/facilitator characteristics. Respondents were asked to identify their greatest challenges in group maintenance and solutions used to overcome those challenges. Knowledge gained from the survey and an extensive literature review were incorporated into the Lung Cancer Support Group Troubleshooting Guide. Outcomes: With a 56% completion rate, specific results varied by demographic area. Groups in AUS and the UK tended to have more participants, were more likely to be cofacilitated by nurses and held in public places. More groups in the US were based in hospitals and run by social workers. 75% of facilitators in the UK and AUS and 71% of those in the US said their groups were successful. What was learned: Creative solutions to lung cancer support group challenges were shared and keys to successful groups identified. Suitable for facilitators at all skills levels, the resulting Guide includes creative solutions for overcoming specific barriers and resource constraints. Widely distributed in the US, a small survey found that 91% of Guide users found it somewhat or very helpful. While written for lung cancer groups, any kind of support group, anywhere in the world that is struggling can benefit from the suggestions and ideas offered by the Guide.