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.

BackgroundThe 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).MethodsTwelve 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.ResultsNone 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.ConclusionsThe 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.Trial registrationCurrent Controlled Trials ISRCTN88605738

Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.

Health professionals may contribute to the reduction of the negative effects of uncertainty through communication of information regarding process of care as well as medical issues. Strategies tailored to individual differences in information requirements and to changing needs may facilitate positive adjustment.