BackgroundSomali women are infrequently screened for breast or cervical cancer, and there is a paucity of evidence-based interventions to increase cancer screening in this community. In order to create a culturally relevant intervention for Somali women living in Minnesota, we sought to understand what Somali immigrant women know about breast and cervical cancer, what are the attitudes toward screening and what cultural barriers are there to screen as well as cultural factors that would facilitate screening.MethodsIn partnership with a community-based organization, New American Community Services (NACS), focus groups were conducted to explore the issues described above. Two focus groups were held with younger women age 20 to 35 and two were held with women age 36 to 65.ResultsTwenty-nine women participated in the four focus groups. The women identified 1) differences in health care seeking behavior in Somalia verses the United States; 2) cultural understanding of cancer and disease; 3) barriers to mammogram or Pap screening; 4) facilitators to seeking preventive cancer screening; and 5) risk factors for developing cancer.ConclusionsCultural misperceptions and attitudes need to be addressed in developing culturally-appropriate interventions to improve screening uptake for Somali women. A nuanced response is required to address barriers specific to younger and older groups. Culturally informed beliefs can be integrated into intervention development, preventive care and screening promotion.

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n =162); followed by four focus groups involving patients, carers and key professionals (n =32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals.

BackgroundSocial dimensions of health are known to contribute to what is often termed “patient complexity,” which is particularly common among patients with multimorbidity. Health-care professionals require tools to help them identify and manage these aspects of patient needs.ObjectivesTo examine: (i) the Patient Centered Assessment Method (PCAM), a tool for assessing patient complexity in ways that are sensitive to the biopsychosocial dimensions of health, in primary care settings in Scotland; (ii) the impact of the PCAM on referral patterns and its perceived value; and (iii) the PCAM’s perceived applicability for use in a complex patient population.DesignTwo studies are described: (i) a mixed-methods prospective cohort study of the implementation of the PCAM in primary care clinics; and (ii) a qualitative exploratory study that evaluated the value of the PCAM in a complex patient population.ResultsUse of the PCAM did not impact patient satisfaction or perception of practitioners’ empathy, but it did increase both the number of onward referrals per referred patient (9–12%) and the proportion of referrals to non-medical services addressing psychological, social, and lifestyle needs. Nurses valued the PCAM, particularly its ability to help them address psychological and social domains of patients’ lives, and found it to be highly relevant for use in populations with known high complexity.ConclusionsThe PCAM represents a feasible approach for assessing patient needs with consideration to the social dimensions of health, and allows practitioners to refer patients to a broader range of services to address patient complexity.

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. Abstract Background: Racial/ethnic minority populations in the United States are consistently underrepresented in genetic research. Large-scale public participation is required to ensure discoveries from precision medicine research are applicable to everyone. To evaluate views toward and facilitators of participation among minority populations in the United States, we conducted a systematic review of literature. Methods: Six databases were searched for articles published from 2005 to 2018 assessing minority populations' views and/or willingness to participate in genetic research. A thematic framework was applied to extracted data to synthesize findings, and the Socio-Ecological Model was used to evaluate papers. Results: Review of 2,229 titles and abstracts identified 27 papers (n = 8 qualitative, n = 19 quantitative). Themes included knowledge of genetics, engagement in research, facilitators and barriers to participation, and cultural considerations.Understanding of genetics was low, yet the majority of participants were willing to participate in genetic research among all populations included in the literature (range: 57%-97%). Recommendations for research included utilizing communitybased participatory approaches, evaluating participants' informational needs, incentivizing participation, and providing direct benefits (e.g., genetic test results). Conclusion: Results could influence future study designs that incorporate all levels of the Socio-Ecological Model and better meet the needs of underrepresented groups, thereby ensuring precision medicine research findings are applicable to all. K E Y W O R D Sgenetic research, precision medicine research, racial/ethnic minorities, research participation strategies

Based on the findings of the study `Tell me the truth': A subjective understanding of diagnosis disclosure (Pratt & Wilkinson, 2001), this article proposes a psychosocial model for understanding the experience of people with dementia. The model operates on two main aspects, the combined desire and/or ability to know the diagnosis, and the social context that surrounds an individual. The model proposes that these two aspects are inexorably linked and are represented as two axes. There are four `quadrants' represented in the model: detachment, distress, maximizing coping, and decline and denial. The model proposes that individual experience can be located in any of these `quadrants' as a function of the combined effect of social context, alongside individual response. The model proposes that social context can contribute to the experience of `distress' or the ability of individuals to access `maximizing coping strategies'. In terms of diagnosis disclosure the model advocates that when an individual shows an `ability and desire' to know their diagnosis, withholding the diagnosis may directly contribute to feelings of distress. This situation would be one example of the potential impact of the social context on individual experience. The implication for practice, and research, is that social context needs to be assessed and explored as part of individual assessment to find ways to minimize distress and maximize positive coping responses.

Introduction Black men are diagnosed with prostate cancer (PCa) at nearly twice the rate of white men and are underrepresented in PCa research, including validation studies of new clinical tools (e.g., genomic testing). Since healthcare system mistrust has contributed to these disparities for centuries, black men may be less inclined to pursue novel testing and facilitators of their PCa research study participation remains warranted. Methods A community-engaged approach involving a partnership with a community organization was utilized to conduct 7 focus groups in Minnesota, Alabama, and California to explore black men’s attitudes toward PCa research participation and genomic testing for PCa. Data were collected and analyzed from April 2015-April 2017. Results Identified genomic testing barriers included a lack of terminology understanding, healthcare system mistrust, reluctance to seek medical care, and unfavorable attitudes toward research. Facilitators included family history, value of prevention, and the desire for health education. Lack of PCa knowledge, PSA testing confusion, health care system distrust, and misuse of personal health information were barriers to research study participation. Some black men were motivated to participate in research if seen as constructive and transparent. Conclusions Disparities for black men can both motivate and disincentivize participation depending upon a positive or negative view of research. Confusion over PCa clinical care has fueled some mistrust among black men affecting both clinical care and research participation. With increased education, health literacy, and assurances of research integrity and transparency, black men may be more willing to participate in PCa testing and research.

The prevalence of domestic abuse against women has been estimated as high as one in four. The risk is particularly high for women who are younger, economically dependent, unemployed and with children. Research about the factors that maintain situations of abuse has generally focused separately on the coping strategies of women, barriers to leaving the relationship and the perpetrators' means of abuse. In this study we used a community psychology perspective to seek a broader understanding of what maintains situations of abuse, in order to suggest interventions in a rural County in the North of England. Twelve women who had experienced domestic abuse and had used voluntary sector services agreed to be interviewed about their experiences and the resources and strategies available to them. Using grounded theory we generated four themes: (1) Commonalities and contradictions in the experience of abuse; (2) living with abuse; (3) the response of systems reinforced or challenged the abuse and (4) dealing with abuse beyond the relationship. These findings illustrate how situations of domestic abuse can be prolonged by limited options available to victims for support and protection, and a lack of active public acknowledgement that domestic abuse is unacceptable.

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