Quality of Life Assessment Among Ethnically Diverse Black Prostate Cancer Survivors: A Constructivist Grounded Theory Approach.

Purpose: Prostate cancer (CaP) is the most common cancer in Black men (BM), and the number of Black CaP survivors is rapidly increasing. Although Black immigrants are among the fastest-growing and most heterogeneous ethnic groups in the US, limited data exist regarding their CaP experiences. Therefore, this study aimed to explore and model the experiences of ethnically diverse Black men with CaP. Methods: In-depth interviews were conducted with 34 participants: Native-born BM (NBBM) (n=17), African-born BM (ABBM) (n=11), and Caribbean-born BM (CBBM) (n=6) CaP survivors recruited through QR-code embedded flyers posted in Black businesses, clinics, social media platforms, and existing research networks within the US. Guided by Charmaz's constructivist grounded theory methodology, the interviews were analyzed using constant comparison following key stages of initial, focused, and theoretical coding using Atlas.ti v23. Results: Participants were thirty-four men aged 49-84 years (mean±SD, 66±8). Most were married (77%), likely to be diagnosed at Stage I (35%), and treated with radiotherapy (56%). Our study findings explored the complex trajectory of Black prostate cancer (CaP) survivors, unveiling a comprehensive model termed "Journeying through Unfamiliar Terrain." Comprising three phases and 11 sub-phases, this model uniquely captures the pre-diagnosis awareness and post-treatment adaptation among survivors. Conclusion: The resulting theoretical model delineates the entire CaP survivorship process among BM, providing contextual and conceptual understanding for developing interventions and enhancing patient-centered care for ethnically diverse CaP survivors, pivotal in bridging the gaps in survivorship research and healthcare practices.

Provision and delivery of survivorship care for adult patients with haematological malignancies: A scoping review protocol.

INTRODUCTION: Haematological malignancies are a heterogenous group of blood and lymphatic cancers. Survivorship care is a similarly diverse term concerning patients' health and wellbeing from diagnosis to end of life. Survivorship care for patients with haematological malignancies has traditionally been consultant-led and secondary care-based, although shifts away from this model have been occurring, largely via nurse-led clinics and interventions with some remote monitoring. However, there remains a lack of evidence regarding which model is most appropriate. Although previous reviews exist, patient populations, methodologies, and conclusions are varied, and further high-quality research and evaluation has been recommended. AIMS: The aim of the scoping review this protocol describes is to summarise current evidence on the provision and delivery of survivorship care for adult patients diagnosed with a haematological malignancy, and to identify existing gaps to inform future research. METHODOLOGY: A scoping review will be carried out utilising Arksey and O'Malley's guidelines as its methodological framework. Studies published in the English language from December 2007 to the present will be searched on bibliographic databases, including Medline, CINAHL, PsycInfo, Web of Science, and Scopus. Papers' titles, abstracts, and full text will predominantly be screened by one reviewer with a second reviewer blind screening a proportion. Data will be extracted using a customised table developed in collaboration with the review team, and presented in tabular and narrative format, arranged thematically. Studies included will contain data regarding adult (25+) patients diagnosed with any haematological malignancy in combination with aspects related to survivorship care. The survivorship care elements could be delivered by any provider within any setting, but should be delivered pre- or post-treatment, or to patients on a watchful waiting pathway. REGISTRATION: The scoping review protocol has been registered on the Open Science Framework (OSF) repository Registries (https://osf.io/rtfvq; DOI: 10.17605/OSF.IO/RTFVQ).

Mobile health (mHealth) interventions in prostate cancer survivorship: a scoping review.

PURPOSE: This scoping review explores the application of mHealth technology in prostate cancer (CaP) management along the survivorship continuum. METHODS: The scoping review was conducted using the five-step framework developed by Arksey and O'Malley. Using predefined criteria, we screened citations from Embase, EBSCOHost, Cochrane Library, PubMed, ProQuest, SCOPUS, and Web of Science for primary studies published before December 2021. We selected studies that explored the application of mHealth technology in CaP management and survivorship. Evidence from 14 eligible studies was summarized using narrative synthesis. RESULTS: Fourteen studies published between 2015 and 2021 were included. Ten mHealth apps were identified with only one still in use. Most apps were explored for their supportive care roles during radiotherapy (n = 9) and androgen deprivation therapy (ADT) (n = 1) treatment, mainly to assess outcomes (n = 1) and manage patient-reported symptoms (n = 5). One study deployed mHealth to facilitate recovery after surgery. Very few studies (n = 3) applied mHealth for lifestyle management (i.e., physical activity). Barriers to app usage included connectivity issues, end-user familiarity with the app, login hurdles, and time constraints. Facilitators of app usage included apps being downloaded for participants, devices provided for participants, and the ability to connect with providers through the platform. CONCLUSIONS AND IMPLICATIONS FOR CANCER SURVIVORS: The improving survival rates from CaP suggest that men are now living longer with unfavorable treatment side effects such as reduced sexual functioning, pain, and fatigue. Hence, mHealth represents new hope in men's illness trajectory. However, current application in patients' care pathways remains poor, particularly in the active phase of CaP management. Efforts must be accelerated to explore individual and healthcare-level drivers of mHealth use. The feasibility and descriptive nature of current studies point to a lack of attention to actual implementation and scale-up issues in research considering mHealth application in CaP, hence accounting partly for the gap in research/practice.

Strengthening Capacity for Prostate Cancer Early Diagnosis in West Africa Amidst the COVID-19 Pandemic: A Realist Approach to Rethinking and Operationalizing the World Health Organization 2017 Guide to Cancer Early Diagnosis.

Two years after SARS-CoV-2 (COVID-19) was declared a global public health emergency, the restoration, at least, to the pre-pandemic level of early diagnostic services for prostate cancer has remained enormously challenging for many health systems, worldwide. This is particularly true of West Africa as the region grapples also with the broader impacts of changing demographics and overly stretched healthcare systems. With the lingering COVID-19 crisis, it is likely that the current trend of late prostate cancer diagnosis in the region will worsen with a concomitant increase in the burden of the disease. There is, therefore, a compelling need for innovative and evidence-based solutions to de-escalate the current situation and forestall the collapse of existing structures supporting early prostate cancer diagnosis in the region. In this viewpoint, we make a case for the operationalization of the World Health Organization (WHO) guide to early cancer diagnosis to strengthen the capacity for early prostate cancer diagnosis in West Africa using a realist approach, drawing on participatory health research and evidence-based co-creation. Ultimately, we demonstrate the potential for developing COVID-19 responsive and context-specific models to optimize patient navigation/journey along the essential steps of the World Health Organization guide to early cancer diagnosis.

A qualitative exploration of women's perspectives and acceptability of including new cancer awareness information in all-clear breast or cervical screening results.

OBJECTIVE: This study explored women's perspectives on the acceptability of including new cancer information with an all-clear breast or cervical screening result letter (using ovarian cancer as a case study). METHODS: In 2016, six focus group discussions were conducted with women aged 25-70 years old, eligible for invitation to the NHS breast or cervical screening programme and resident in England. The focus groups lasted 60-90 min and were held in community venues. Data were analysed using thematic analysis. RESULTS: Thirty-eight women aged 25-67 years old participated in the focus groups. Data analysis yielded six descriptive themes: general cancer awareness, taking advantage of a 'teachable moment', a double-edge sword, barriers to accepting and using new cancer information, motivators for accepting and using new cancer information and wider strategies to increase cancer awareness in women. Women welcomed the inclusion of new cancer information in all-clear screening results but highlighted pertinent lessons to be considered to maximise the usefulness of the approach. CONCLUSION: While women perceived this approach as acceptable, it is pertinent to note the potential of the new cancer information to stimulate anxiety and potentially widen inequalities by excluding non-attenders at screening programmes. Specific complementary and tailored approaches are necessary to mitigate these limitations.

Barriers and facilitators to accessing and utilising post-treatment psychosocial support by Black men treated for prostate cancer-a systematic review and qualitative synthesis.

PURPOSE: To synthesise findings from published studies on barriers and facilitators to Black men accessing and utilising post-treatment psychosocial support after prostate cancer (CaP) treatment. METHODS: Searches of Medline, Embase, PsycInfo, Cochrane Database of Systematic Reviews and Central, CINAHL plus and Scopus were undertaken from inception to May 2021. English language studies involving Black men aged ≥18 and reporting experiences of, or suggestions for, psychosocial support after CaP treatment were included. Low or moderate quality studies were excluded. Searches identified 4,453 articles and following deduplication, 2,325 were screened for eligibility. Two independent reviewers carried out screening, quality appraisal and data extraction. Data were analysed using thematic synthesis. RESULTS: Ten qualitative studies involving 139 Black men were included. Data analysis identified four analytical constructs: experience of psychosocial support for dealing with treatment side effects (including impact on self-esteem and fear of recurrence); barriers to use of psychosocial support (such as perceptions of masculinity and stigma around sexual dysfunction); facilitators to use of psychosocial support (including the influence of others and self-motivation); and practical solutions for designing and delivering post-treatment psychosocial support (the need for trusted healthcare and cultural channels). CONCLUSIONS: Few intervention studies have focused on behaviours among Black CaP survivors, with existing research predominantly involving Caucasian men. There is a need for a collaborative approach to CaP care that recognises not only medical expertise but also the autonomy of Black men as experts of their illness experience, and the influence of cultural and social networks.

A constructivist grounded theory study on decision-making for treatment choice among Black African and Black Caribbean prostate cancer survivors.

OBJECTIVE: Despite Black African (BA) and Black Caribbean (BC) men having a disproportionately high risk (1 in 4) of developing prostate cancer (CaP), there is limited understanding of their decision-making for treatment choice. This study explored decision-making for treatment choice among BA/BC men treated for CaP. METHODS: Using constructivist grounded theory, face-to-face, Skype and telephone interviews were conducted with 25 Black men (8 BA, 17 BC) recruited in England between October 2016 and March 2018. Data were analysed using constant comparison until saturation was achieved. RESULTS: Data analysis yielded three broad categories: 'coming to terms with the prostate cancer diagnosis', 'getting empowerment through information-seeking' and 'choosing a treatment option'. Priority for survival substantially motivated BA/BC men to take up radical treatment for their CaP. However, decision-making for a particular treatment option was a more complex process which was shaped by an intersection between biological, behavioural, medical, personal and cultural factors. CONCLUSIONS: Healthcare providers need to consider the complexity of decision-making process for CaP treatment among BA/BC men and tailor cancer care services to reflect cultural sensitivity and person-centredness. This could potentially minimise treatment decision regrets and improve men's psychological wellbeing along the CaP survivorship pathway.

Examining public knowledge, attitudes and perceptions towards palliative care: a mixed method sequential study.

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.

International palliative care research priorities: A systematic review.

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.

"Man in the driving seat": A grounded theory study of the psychosocial experiences of Black African and Black Caribbean men treated for prostate cancer and their partners.

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.

"Hard to reach, but not out of reach": Barriers and facilitators to recruiting Black African and Black Caribbean men with prostate cancer and their partners into qualitative research.

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.