Supported self-care interventions are a low-intensity treatment for depression that has received little research attention in the cancer population. This is a phase II intervention only study to test the feasibility, acceptability and preliminary effectiveness of a depression self-care intervention for cancer patients who have completed their primary treatment and have moderate depressive symptoms. The self-care intervention was adapted from a successful model for people with chronic physical conditions, following focus groups with cancer care professionals and patients. The support was delivered by telephone by a trained lay coach who provided up to 8 weekly coaching contacts. A variety of recruitment methods were tested; those with the highest yield of eligible subjects per research staff time were electronic mailings to community support group members and social media posting. Sixty-eight people were contacted about the study over an 11-month period, of whom 34 (49%) were eligible; 32 were enrolled (94% recruitment rate); and 25 completed 2-month follow-up (78% retention). The mean severity of PHQ-9 depression decreased significantly from screening to 2 months (12.8 to 7.0, p < .0001). The intervention is a promising treatment option for cancer survivors, demonstrating sufficient effectiveness and feasibility to proceed with a phase III clinical trial. K E Y W O R D Scancer survivorship, depression, feasibility, intervention, self-care, self-management
Background Women diagnosed with breast cancer are often bombarded with information. Such information overload can lead to misunderstandings and hamper women’s capacity for making informed decisions about their care. For women with breast cancer, this uncertainty is particularly severe in the period before surgery. Personalized narratives about others’ experiences can help patients better understand the disease course, the quality and type of care to be expected, the clinical decision-making processes, and the strategies for coping. Existing resources and eHealth apps rarely include experiential information, and no tools exist that tailor information for individual preferences and needs—offering the right information at the right time and in the right format. Combining high-quality experiential evidence with novel technical approaches may contribute to patient-centered solutions in this area. Objective This study aims to design and seek preliminary feedback on a mobile app that will improve information access about surgery for patients with breast cancer, by drawing on a qualitative collection of personal narratives from a diverse sample of Canadian women and using video and audio recordings or audio recordings from the Canadian Health Experiences Research Network. Methods In a previous study, we conducted in-depth interviews with 35 Canadian women and used video and audio recordings or audio recordings to collect stories about the lived experiences of breast cancer. The participants highlighted the need for more specific information between diagnosis and surgery that was relevant to their personal situations and preferences. They also wanted to learn from other women’s experiences. We worked with patients, clinicians, and informatics experts to develop a mobile app that provides access to tailored experiential information relevant to women’s personal situations and preferences. We completed focus groups and qualitative interviews, conducted a further analysis of the original qualitative data, designed novel software using artificial intelligence, and sought preliminary feedback from users on a new app via focus groups and a survey. Results The secondary analysis of the breast cancer narratives revealed key themes and their interconnections relevant to the experience of surgery, including preparation, treatment decisions, aftercare, reconstruction, prostheses, lumpectomy and mastectomy, and complications. These themes informed the development of the structure and content of the app. We developed a recommender system within the app by using content matching (user and speaker profiles and user interests and video content) and collaborative filtering to identify clips marked as relevant by the user and by similar users. A 2-minute animated introductory video for users was developed. Pilot testing revealed generally positive responses regarding the content and value of this type of e-tool. Conclusions Developing reliable, evidence-based tools and apps that are based on diverse collections of people’s experiences of illness offers a novel approach to help manage the plethora of information that women face after a diagnosis of breast cancer.
Objective The aims of this study were to evaluate the readability, suitability, and quality of publicly available online self‐management (SM) resources for people with cancer. Methods Resources were identified using two strategies: (1) a targeted search of 20 Canadian organizations and (2) a Google search. These were evaluated using the Suitability Assessment of Materials (SAM), the DISCERN tool for quality, and readability indices. The SM skills (e.g., problem‐solving) and symptom management strategies addressed by each resource were also assessed. Descriptive and hierarchical cluster analyses were performed to identify resources of the highest suitability and quality as well as resource characteristics associated with higher quality and suitability. Results A total of 92 resources were evaluated. The mean reading grade level for English resources was 10.29 (SD = 1.64, range of 7.05 to 15.09) and 12.62 for French resources (SD = 2.27, range of 10.12 to 15.65). The mean SAM score across the sample was 50.4% (SD = 10.6%), or ‘adequate’, and the mean DISCERN score was 61.1% (SD = 11.8%), or ‘fair’. The cluster analysis indicated that 10 resources scored highly on both the SAM and the DISCERN. In total, 91 symptom management strategies were identified. On average, resources addressed 2.73 SM skills (SD = 1.58). Conclusions There is a need for plain language resources for people with lower reading ability and resources that incorporate more SM skills. Study findings will help healthcare professionals, patients, and their families identify optimal resources to address cancer‐related symptoms.
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