The severe iatrogenic hypogonadal state induced by medical castration used for treatment of prostate cancer is associated with adverse effects including fatigue, increased fracture risk, and a decrease in skeletal muscle function, which negatively impact quality of life. We have previously reported beneficial changes in healthy lifestyle behaviors, physical function and fatigue as a result of a novel combined exercise and dietary advice intervention (a lifestyle intervention) in men with prostate cancer on androgen suppression therapy (AST). The aim of this research was to conduct a qualitative evaluation of the lifestyle intervention in these men with advanced prostate cancer receiving androgen suppression therapy (AST). Twelve men with prostate cancer on AST took part in three focus groups in a UK higher education institution following the 12 week intervention. Sessions lasted between 45 and 60 minutes in duration. All discussions were audio-taped and transcribed. A framework analysis approach was applied to the focus group data. An initial coding framework was developed from a priori issues listed in the topic guide and extended and refined following initial familiarization with the focus group transcripts. Line by line indexing of the transcripts was undertaken iteratively to allow for the incorporation of new codes. Coded sections of text were grouped together (charted) into themes and subthemes prior to a further process of comparison and interpretation. None of the participants involved in the trial were provided with information on how lifestyle changes might be beneficial to men with prostate cancer during the course of their standard medical treatment. We present novel findings that this intervention was considered beneficial for reducing anxiety around treatment and fear of disease progression. Men were supportive of the benefits of the intervention over conventional cancer survival discussion group arrangements as it facilitated peer support in addition to physical rehabilitation. The benefits of lifestyle changes in men with prostate cancer are not well appreciated by care providers despite a range of benefits becoming apparent. Strategies to implement exercise and dietary interventions in standard care should be further evaluated. Current Controlled Trials ISRCTN88605738.
20 December 2010 in European Journal of Cancer Care
NANTON V. & DALE J. (2011) European Journal of Cancer Care20, 62–71‘It don't make sense to worry too much’: the experience of prostate cancer in African‐Caribbean men in the UK The incidence of prostate cancer among African‐Caribbean men in the UK is three times that among men from the majority population. Little attention, however, has been given to the perceptions and experiences of treatment and care of men from these communities with prostate cancer. This qualitative study is the first such investigation, situating men's accounts within the context of their personal history and social environment. Using a community‐based, snowball sampling method, 16 first generation African‐Caribbean men living in Central England were recruited. Similarities and divergence in men's experience were identified through thematic analysis of interview transcripts. Men's responses to their situation were influenced by aspects of migration and historical context as well as culture. While medical treatment was highly valued, common difficulties were compounded by problems of health professional–patient communication, stereotyping and insensitivity of some staff. Lack of coordination between services and agencies adversely affected the well‐being of frail men and widowers. Findings suggest the need for a more proactive approach to giving and eliciting information combined with cultural diversity training. More systematic referral procedures and information exchange between African‐Caribbean men with prostate cancer and their general practitioner, hospital, social care and voluntary agencies, churches and community organisations are indicated.
22 December 2015 in British Journal of Health Psychology
Purpose This study assessed the feasibility of implementing a novel model of integrated prostate cancer care involving an online prostate cancer-specific holistic needs assessment (sHNA) and shared digital communication between patients and their healthcare professionals (HCPs). The sHNA produces a semi-automated care plan that is finalised in consultation between the patient and their practice nurse. Methods Men living with and beyond prostate cancer were invited to participate in a 9-month non-randomised cluster controlled feasibility study. The intervention group was asked to complete the sHNA on three occasions. Data were collected using Patient Reported Outcome Measures (PROMs) at baseline, 10 and 24 weeks, and 9 months. Outcomes included recruitment, retention, acceptability, and engagement with the sHNA and PROMs. Results Fourteen general practices (8 intervention and 6 control), and 41 men (29 intervention and 12 control) participated. Initial patient engagement with the sHNA was high, with all but one receiving practice nurse-led follow-up and an individualised care plan. The sHNA proved useful in identifying ‘red flag’ symptoms, and helping practice nurses decide when to seek further medical care for the patients. There was a high level of acceptability for patients and HCPs. However, integration of care did not occur as intended because of problems linking hospital and general practice IT systems. Conclusion While the study demonstrated the feasibility of implementing the sHNA, it did not meet the a priori progression criteria; as such, undertaking a definitive randomised controlled trial is not appropriate until the identified methodological and technical issues have been addressed.
Background: Informal carers play an increasingly vital role in supporting the older population and the sustainability of health care systems. Care Companion is a theory-based and coproduced Web-based intervention to help support informal carers’ resilience. It aims to provide personalized access to information and resources that are responsive to individuals’ caring needs and responsibilities and thereby reduce the burdens associated with caregiving roles. Following the development of a prototype, it was necessary to undertake user acceptability testing to assess its suitability for wider implementation. Objective: This study aimed to undertake user acceptance testing to investigate the perceived usefulness and ease of use of Care Companion. The key objectives were to (1) explore how potential and actual users perceived its usefulness, (2) explore the barriers and facilitators to its uptake and use and (3) gather suggestions to inform plans for an area-wide implementation. Methods: We conducted user acceptance testing underpinned by principles of rapid appraisal using a qualitative descriptive approach. Focus groups, observations, and semistructured interviews were used in two phases of data collection. Participants were adult carers who were recruited through local support groups. Within the first phase, think-aloud interviews and observations were undertaken while the carers familiarized themselves with and navigated through the platform. In the second phase, focus group discussions were undertaken. Interested participants were then invited to trial Care Companion for up to 4 weeks and were followed up through semistructured telephone interviews exploring their experiences of using the platform. Thematic analysis was applied to the data, and a coding framework was developed iteratively with each phase of the study, informing subsequent phases of data collection and analysis. Results: Overall, Care Companion was perceived to be a useful tool to support caregiving activities. The key themes were related to its appearance and ease of use, the profile setup and log-in process, concerns related to the safety and confidentiality of personal information, potential barriers to use and uptake and suggestions for overcoming them, and suggestions for improving Care Companion. More specifically, these related to the need for personalized resources aimed specifically at the carers (instead of care recipients), the benefits of incorporating a Web-based journal, the importance of providing transparency about security and data usage, minimizing barriers to initial registration, offering demonstrations to support uptake by people with low technological literacy, and the need to develop a culturally sensitive approach. Conclusions: The findings identified ways of improving the ease of use and usefulness of Care Companion and demonstrated the importance of undertaking detailed user acceptance testing when developing an intervention for a diverse population, such as informal carers of older people. These findings have informed the further refinement of Care Companion and the strategy for its full implementation.