Cultural beliefs, behaviours and values should be taken into account when developing psychosocial support for partners and their men with CaP. Specifically providing information focused on partners and including them in the CaP care pathway could help ensure that partners' needs are recognised and improve marital communications. This could potentially help partners and their men to identify acceptable ways of supporting each other throughout the CaP experience.
Background: There has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework. Methods: A systematic review of several academic and grey databases were searched from January 2008-June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis. Results: The search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas. Conclusions: Limited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.
What is known about this topic?• Advances in breast screening services have led to improvements in early detection, reduced mortality and better management of breast cancer.• Low uptake of the national breast screening programme and delayed presentation of breast cancer symptoms means that mortality from breast cancer continues to be high among Black African women.• Reasons for low uptake of the breast screening services among Black African women are poorly understood. What this paper adds?• This paper presents salient factors leading to low uptake of the NHS Breast Screening programme by Black African women in England.• There is need for culturally relevant interventions to improve knowledge on cancer, cancer screening and treatments options for Black African women.• These interventions should be delivered through community social networks, community media (TV, Radio, newspapers, workshops) and faith settings such as Churches and Mosques.• Offering appropriate and culturally sensitive pre-screening and post-screening counselling services could also help increase Black African women's awareness about breast cancer, reduce their perceptions of the stigma associated with cancer and allay their fears of fatal breast cancer outcomes. ABSTRACTBreast cancer is the most common cancer among women in the United Kingdom (UK) accounting for about 15% of cancer deaths. The National Breast Cancer Screening Programme in the UK was introduced in 1988 to assist with early detection and better management of breast cancer. Black and Minority Ethnic (BME) women however have a low uptake of the National Breast Screening programme when compared to their White counterparts. Within the BME group, Black African women have the lowest uptake of screening services and are more likely to have an advanced stage of the disease at diagnosis, leading to poorer survival rates than White women. This study aimed to explore the factors that lead to low uptake of the National Breast Cancer Screening Programme among Black African women living in Luton, UK and present action points to local breast cancer services. Using a qualitative research design, six focus groups were conducted with a total of twenty-five Black African women residing in Luton between May and June in 2013. Data was analysed thematically using the framework approach. Four main themes emerged across the focus group discussions: awareness and beliefs about breast cancer and risk factors, prevention of breast cancer and awareness of the NHS breast screening programme, low uptake of the NHS breast screening service and suggestions for improving information on breast cancer and the NHS breast cancer screening programme. The findings from this study suggest the need for more targeted information on breast cancer and screening services for Black African women. This could help improve the uptake of the NHS breast screening programme, promote early help-seeking behaviour and improve breast cancer outcomes for this ethnic group.
Access and recruitment barriers may have contributed to the underrepresentation of Black African/Caribbean men and their partners in current psychosocial research related to prostate cancer survivors. Whilst some studies have explored recruitment barriers and facilitators from participants’ perspectives, little is known from researchers' point of view. This paper aimed to address this gap in the literature. Recruitment strategies included the following: cancer support groups, researchers’ networks, media advertisement, religious organisations, National Health Service hospitals and snowball sampling. Thirty‐six eligible participants (men = 25, partners = 11) were recruited into the study. Recruitment barriers comprised of gate‐keeping and advertisement issues and the stigma associated with prostate cancer disclosure. Facilitators which aided recruitment included collaborating with National Health Service hospitals, snowball sampling, flexible data collection, building rapport with participants to gain their trust and researcher's attributes. Findings highlight that “hard to reach” Black African/Caribbean populations may be more accessible if researchers adopt flexible but strategic and culturally sensitive recruitment approaches. Such approaches should consider perceptions of stigma associated with prostate cancer within these communities and the influence gatekeepers can have in controlling access to potential participants. Increased engagement with healthcare professionals and gatekeepers could facilitate better access to Black African/Caribbean populations so that their voices can be heard and their specific needs addressed within the healthcare agenda.
Evidence shows that there are significant ethnic variations in prostate cancer prevalence and outcomes. Specifically, Black African and Black Caribbean men may encounter different post-treatment experiences than Caucasian men due to their disproportionately higher risk of being diagnosed with advanced prostate cancer. But to date, no review of these experiences has been undertaken. This review synthesised findings from existing literature on the post-treatment experiences of Black African and Black Caribbean men with prostate cancer and identified pertinent issues which may be useful to inform practice and future research. Seven databases were systematically searched using developed search terms. Four qualitative studies were identified and critically appraised. Findings are summarised under four main themes: symptom experience, healthcare experience, marital and social relationships and coping strategies. Cultural definitions of masculinity influenced the meanings men gave to their post-treatment experiences. While men's experiences of healthcare varied, the provision of professional support to address their post-treatment distress was lacking.Men derived most support from wives, peers and church communities. A culturally sensitive approach which recognises diversity among Black African and Black Caribbean populations and treats individuals within their religious and socio-cultural contexts could potentially improve men's post-treatment experiences. Areas for further research were also identified. K E Y W O R D SBlack African, Black Caribbean, experience, men, post-treatment, prostate cancer
Background Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access. Methods An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis. Results A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents’ levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person’s ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience. Conclusions Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes.
Objective Evidence suggests that treatment side‐effects of prostate cancer (CaP) substantially affect the psychosocial well‐being of affected men and their partners. However, this phenomenon is poorly understood among high risk (1 in 4) Black African (BA)/Black Caribbean (BC) men and their partners, as they are currently under‐represented in global research on CaP survivorship. This study explored the psychosocial experiences of BA/BC men with CaP and their partners in the United Kingdom as they lived through the side effects of CaP treatment within their own sociocultural and marital contexts. Methods Using constructivist grounded theory methodology, interviews and focus groups were conducted with eligible men (n = 25), partners (n = 11), and health care professionals (HCPs) (n = 11) recruited in England. Data were iteratively analysed using constant comparison following the key stages of initial, focused, and theoretical coding until saturation was achieved. Results Data analysis culminated in the development of a substantive theory “man in the driving seat,” which describes the experiences of BA/BC men with CaP and their partners within their context. Culturally informed gender roles and identities influenced how men and partners responded and coped with the side effects of CaP treatment. There was a hierarchy of power within the BA/BC relationship, in which men were dominantly positioned as leaders, whilst partners mostly operated from a supportive but “accepting” position. Conclusion Inclusive and culturally sensitive individual and couple‐focused psychosocial support, which is devoid of stereotyping and recognises the experiences of both BA/BC men and their partners is recommended.
Background: There has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework.Methods: A systematic review of several academic and grey databases were searched from January 2008- June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis.Results: The search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas.Conclusions: Limited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.
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