A Delphi-based approach to developing the contents of an online resource, Care Assist, for male caregivers of women with breast cancer.

OBJECTIVE: Informal male caregivers of women with breast cancer (BC) have significant psychological, emotional, and social burdens that are inadequately addressed by current face-to-face interventions. Online interventions overcome barriers that limit engagement with face-to-face interventions. This study aimed to develop the contents of Care Assist, an online supportive care resource for male caregivers of BC patients, through expert consensus. METHODS: A Delphi study comprising two survey rounds and an expert consultation was conducted. In Round 1, experts in BC care rated the importance of 25 content items. In Round 2, they re-rated content items that failed to reach consensus (i.e. 80% agreement) in Round 1 or were newly developed. Free-text responses were also collected. During expert consultation, the resource was reviewed and revised for clarity. Iterative refinement followed all rounds. Quantitative data was analysed descriptively, and qualitative data was analysed using content analysis. RESULTS: Twenty-two experts participated and reached consensus on 96% of items, with 217 comments provided on: (a) the perceived benefits of Care Assist to caregivers and care recipients, (b) recommendations of newly suggested content items, wording, and use of external links, and (c) concerns regarding information overload and need for tailoring. The expert consultation comments focused on clarifying scope, wording, and information tailoring. CONCLUSION: The rigorous Delphi process resulted in the content for a comprehensive online supportive care intervention for male caregivers. Information overload can be minimised through self-identification of needs and utilisation of eHealth to personalise the resource for the heterogeneous male caregiver population.

Reducing Body Image-Related Distress in Women With Breast Cancer Using a Structured Online Writing Exercise: Results From the My Changed Body Randomized Controlled Trial.

Purpose Breast cancer treatment adverse effects result in one in three survivors experiencing body image-related distress (BID) that negatively impacts on a woman's ability to recover after cancer and into survivorship. My Changed Body (MyCB) is a Web-based psychological intervention to alleviate BID and improve body appreciation in survivors of breast cancer (BCSs) through a single-session, self-compassion focused writing activity. This randomized controlled trial evaluated the impact of MyCB on BID and body appreciation in BCSs. The moderating effect of lymphedema status (affected or unaffected) and appearance investment (self-importance placed on personal appearance) and the mediating effect of self-compassion were evaluated. Patients and Methods Women (disease-free stage I to III BCSs who had experienced at least one negative event related to bodily changes after breast cancer) were randomly assigned to MyCB (n = 149) or an expressive writing control arm (n = 155). Primary outcomes were reduction in BID and improvement in body appreciation 1 week after intervention. Secondary outcomes included psychological distress (depression and anxiety) and self-compassion. Follow-up assessments occurred 1 week, 1 month, and 3 months after writing. Results Compliance with the MyCB intervention was 88%, and attrition was 9.2%. Intent-to-treat linear mixed models indicated that participants who received MyCB reported significantly less BID ( P = .035) and greater body appreciation ( P = .004) and self-compassion ( P < .001) than expressive writing participants. Intervention effects on BID were moderated by lymphedema status ( P = .007) and appearance investment ( P = .042). Self-compassion mediated effects on both primary outcomes. Therapeutic effects were maintained at 1 month (BID and body appreciation) and 3 months (body appreciation) after intervention. Significant reductions in psychological distress (1-month depression, P = .001; 1-week and 1-month anxiety, P = .007) were evident for MyCB participants with lymphedema. Conclusion This study supports the efficacy of MyCB for reducing BID and enhancing body appreciation among BCSs.

An e-health strategy to facilitate care of breast cancer survivors: A pilot study.

AIM: Innovative e-health strategies are emerging, to tailor and provide convenient, systematic and high-quality survivorship care for an expanding cancer survivor population. This pilot study tests the application of an e-health platform, "Healthy.me," in a breast cancer survivor cohort at Liverpool and Macarthur Cancer Therapy Centres, New South Wales, Australia. METHODS: Fifty breast cancer patients were recruited to use the Healthy.me website, designed by the Centre of Health Informatics at the University of New South Wales, over a 4-month period. Telephone and online questionnaires were used at 1 and 4 months and a face-to-face feedback at study completion, to gather qualitative and quantitative data regarding feasibility of Healthy.me. RESULTS: Healthy.me was reported to be a useful online resource by most users. Usage declined from 76% at 1 month to 48% at 4 months. Breast cancer survivors enjoyed a variety of tailored information regarding health and life-style issues. Positive aspects of Healthy.me were the convenient access to trusted information, and interaction with their peers and healthcare professionals. Barriers to usage contributing to usage decline were lack of reported patient time to re-access information, limited content updates and technical factors. CONCLUSIONS: This pilot study suggested the potential of an e-health strategy such as Healthy.me in addressing the needs of a growing breast cancer survivor population. Ongoing development of a more robust e-health resource and integration with primary care models is warranted.

My Changed Body: Background, development and acceptability of a self-compassion based writing activity for female survivors of breast cancer.

OBJECTIVE: To assess consumer and health professional user acceptability of a web-based self-compassion writing activity to minimize psychological distress related to the negative impact of breast cancer on body image. METHODS: "My Changed Body" is a web-based writing activity that combines expressive writing with a self-compassionate approach that focuses on cancer-related adverse body image alterations. Breast cancer survivors (n=15) and health professionals (n=20) provided feedback via a survey regarding the appearance, organization and content of the website and writing activity. RESULTS: Both breast cancer survivors and health professionals rated the website highly in terms of design, layout and content. Participants commented positively on the website's clear wording, appealing design and ease of navigation. Suggestions for improving the website included simplifying the instructions for the writing activity and allowing participants' writing to be saved. CONCLUSION: Results from both breast cancer survivors and health professionals suggest a moderate to high level of user acceptability and positive ratings for the overall impression of the website. PRACTICE IMPLICATIONS: Self-compassion based writing interventions can be translated to a web-based self-administered activity for body image difficulties after breast cancer treatment in a format that is acceptable to consumers and health professionals.

My changed body: breast cancer, body image, distress and self-compassion.

BACKGROUND: Bodily changes after breast cancer treatment can lead to long-term distress. Self-compassion, the ability to be kind to oneself, is an internal resource that may enhance a woman's ability to adjust to cancer-related bodily changes. The aim of the present study was to test the hypothesis that self-compassion mediates the relationship between body image and distress, controlling for alternate plausible mediators. METHODS: Members of a nationwide breast cancer consumer network were invited to participate. A total of 279 women who had finished active cancer treatment completed the online survey. Assessments included the Body Image Scale; Self-compassion Scale; Depression, Anxiety and Stress Scale and items measuring perceived normative pressure and comfort with one's weight. Possible mediating effects of proposed variables on the body image-distress relationship were assessed. RESULTS: Tests using a bootstrapping approach with multiple mediators were significant for self-compassion on distress. Body image disturbance was indirectly associated with distress through low self-compassion. CONCLUSIONS: Body image disturbance and lower self-compassion were associated with increased psychological distress among these breast cancer survivors. This study provides preliminary evidence for a mediating role of self-compassion between body image disturbance and psychological distress, suggesting a potentially protective effect of higher levels of self-compassion for women at risk of experiencing body image disturbance.