Cardiovascular disease risk assessment for Aboriginal and Torres Strait Islander adults aged under 35 years: a consensus statement.

Cardiovascular disease (CVD) is a leading cause of preventable morbidity and mortality in Aboriginal and Torres Strait Islander peoples. This statement from the Australian Chronic Disease Prevention Alliance, the Royal Australian College of General Practitioners, the National Aboriginal Community Controlled Health Organisation and the Editorial Committee for Remote Primary Health Care Manuals communicates the latest consensus advice of guideline developers, aligning recommendations on the age to commence Aboriginal and Torres Strait Islander CVD risk assessment across three guidelines. MAIN RECOMMENDATIONS: In Aboriginal and Torres Strait Islander peoples without existing CVD: CVD risk factor screening should commence from the age of 18 years at the latest, including for blood glucose level or glycated haemoglobin, estimated glomerular filtration rate, serum lipids, urine albumin to creatinine ratio, and other risk factors such as blood pressure, history of familial hypercholesterolaemia, and smoking status. Individuals aged 18-29 years with the following clinical conditions are automatically conferred high CVD risk: ▶type 2 diabetes and microalbuminuria; ▶moderate to severe chronic kidney disease; ▶systolic blood pressure ≥ 180 mmHg or diastolic blood pressure ≥ 110 mmHg; ▶familial hypercholesterolaemia; or ▶serum total cholesterol > 7.5 mmol/L. Assessment using the National Vascular Disease Prevention Alliance absolute CVD risk algorithm should commence from the age of 30 years at the latest - consider upward adjustment of calculated CVD risk score, accounting for local guideline use, risk factor and CVD epidemiology, and clinical discretion. Assessment should occur as part of an annual health check or opportunistically. Subsequent review should be conducted according to level of risk. CHANGES IN MANAGEMENT AS A RESULT OF THIS STATEMENT: From age 18 years (at the latest), Aboriginal and Torres Strait Islander adults should undergo CVD risk factor screening, and from age 30 years (at the latest), they should undergo absolute CVD risk assessment using the NVDPA risk algorithm.

Contribution of Aboriginal Community-Controlled Health Services to improving Aboriginal health: an evidence review.

Objective Aboriginal Community-Controlled Health Services (ACCHSs) deliver comprehensive, culturally appropriate primary health care to Aboriginal people and communities. The published literature acknowledging and supporting the roles of ACCHSs in improving Aboriginal health is limited. This paper seeks to collate and analyse the published evidence supporting the contribution of ACCHSs to improving the health of Aboriginal people. Methods A conceptual framework for exploring the contribution of ACCHSs was developed, drawing on the literature on the core functions of ACCHSs and the components of quality primary health care. This framework was used to structure the search strategy, inclusion criteria and analysis of the review. Results ACCHSs contribute to improving the health and well being of Aboriginal peoples through several pathways, including community controlled governance, providing employment and training, strengthening the broader health system and providing accessible, comprehensive primary health care. Conclusions ACCHSs make a range of important contributions to improving the health of Aboriginal peoples that are under-acknowledged. Consideration of the different ways ACCHSs contribute to improving Aboriginal health is of value in the design and evaluation of programs and policies that aim to improve the health of Aboriginal peoples. What is known about the topic? Aboriginal communities have long argued the vital role of ACCHSs in improving Aboriginal health. What does this paper add? This paper provides a comprehensive collation and analysis of the evidence supporting the contributions ACCHSs are making to improving Aboriginal health. What are the implications for practitioners? The conceptual framework and findings outlined in this paper illustrate that ACCHSs are making important contributions to improving Aboriginal health through several pathways. This information can be used to ensure actions to improve Aboriginal health are appropriate and effective. There are important gaps in the literature that researchers need to address.

The Effect of Pack Warning Labels on Quitting and Related Thoughts and Behaviors in a National Cohort of Aboriginal and Torres Strait Islander Smokers.

INTRODUCTION: The high prevalence of smoking among Aboriginal and Torres Strait Islander people in Australia (39%) contributes substantially to health inequalities. This study assesses the impact of warning labels on quitting and related thoughts and behaviors for Aboriginal and Torres Strait Islander smokers. METHODS: Participants were recruited from communities served by 34 Aboriginal Community Controlled Health Services and communities in the Torres Strait, Australia, using quota sampling. A cohort of 642 daily/weekly smokers completed relevant questions at baseline (April 2012-October 2013) and follow-up (August 2013-August 2014). RESULTS: We considered three baseline predictor variables: noticing warning labels, forgoing cigarettes due to warning labels ("forgoing") and perceiving labels to be effective. Forgoing increased significantly between surveys only for those first surveyed prior to the introduction of plain packs (19% vs. 34%); however, there were no significant interactions between forgoing cigarettes and the introduction of new and enlarged graphic warning labels on plain packaging in any model. Forgoing cigarettes predicted attempting to quit (adjusted odds ratio [AOR]: 1.45, 95% confidence interval [CI]: 1.02-2.06) and, among those who did not want to quit at baseline, wanting to quit at follow-up (AOR: 3.19, 95% CI: 1.06-9.63). Among those less worried about future health effects, all three variables predicted being very worried at follow-up. Often noticing warning labels predicted correct responses to questions about health effects that had featured on warning labels (AOR: 1.84, 95% CI: 1.20-2.82) but not for those not featured. CONCLUSIONS: Graphic warning labels appear to have a positive impact on the understanding, concerns and motivations of Aboriginal and Torres Strait Islander smokers and, through these, their quit attempts. IMPLICATIONS: Graphic warning labels are likely to be effective for Aboriginal and Torres Strait Islander smokers as they are for the broader Australian population.

African American Patients' Psychosocial Support Needs and Barriers to Treatment: Patient Needs Assessment.

This study assessed adult patient's psychosocial support needs and treatment barriers in an urban diverse cancer center. A needs assessment was conducted with a convenience sample of adult oncology patients (n = 113; 71.7 % African American). Most patients were parenting school-age children and worried about them (96 %); 86.7 % would attend a family support program. Among patients who were married or partnered (68 %), 63.7 % were concerned about communication, coping, and emotional support; 53.9 % would attend a couple support program. Patients identified similar treatment barriers: transportation, babysitting for younger children, convenience of time/place, and refreshments. Findings suggest that behavioral health care providers should be available to screen cancer patients and improve access to appropriate psychosocial oncology support programs.

Predictors of wanting to quit in a national sample of Aboriginal and Torres Strait Islander smokers.

OBJECTIVE: To describe factors that predict wanting to quit smoking in a national sample of Aboriginal and Torres Strait Islander people. DESIGN, SETTING AND PARTICIPANTS: The Talking About The Smokes (TATS) project used a quota sampling design to recruit participants from communities served by 34 Aboriginal community-controlled health services and one community in the Torres Strait. Baseline survey data were collected from 1643 current smokers between April 2012 and October 2013. MAIN OUTCOME MEASURE: Wanting to quit smoking. RESULTS: More than two-thirds of smokers (70%) said they want to quit. Many factors were associated with wanting to quit, including past quitting activity. Interest in quitting was lower among men and smokers from economically disadvantaged areas, but there was no difference by age, remoteness or other measures of economic disadvantage. Attitudes and beliefs negatively associated with wanting to quit included enjoying smoking and believing quitting to be very difficult, and those positively associated included regretting ever starting to smoke, perceiving that local Aboriginal and Torres Strait Islander community leaders disapprove of smoking, believing non-smokers set a good example to children, worrying about future smoking-related health effects and believing quitting to be beneficial. Reporting support from family and friends was predictive of wanting to quit, but factors related to smoking in the social network were not. Associations with health and wellbeing were mixed. While most tobacco control policy exposure variables were positively associated with wanting to quit, two - receiving advice to quit from a health professional, and recall of targeted anti-tobacco advertising - appeared to have an effect that extended beyond influencing relevant attitudes and beliefs. CONCLUSION: Interest in quitting among Aboriginal and Torres Strait Islander smokers appears to be influenced by a broad range of factors, highlighting the importance of taking a comprehensive approach to tobacco control. Advice from health professionals and targeted advertising appear to be important intervention strategies.

Past quit attempts in a national sample of Aboriginal and Torres Strait Islander smokers.

OBJECTIVES: To describe past attempts to quit smoking in a national sample of Aboriginal and Torres Strait Islander people, and to compare their quitting activity with that in the general Australian population. DESIGN, SETTING AND PARTICIPANTS: The Talking About The Smokes (TATS) project used a quota sampling design to recruit participants from communities served by 34 Aboriginal community-controlled health services and one community in the Torres Strait. We surveyed 1643 smokers and 78 recent quitters between April 2012 and October 2013. Baseline results for daily smokers (n = 1392) are compared with results for daily smokers (n = 1655) from Waves 5 to 8.5 (2006-2012) of the Australian International Tobacco Control Policy Evaluation Project (ITC Project). MAIN OUTCOME MEASURES: Ever having tried to quit, tried to quit in the past year, sustained a quit attempt for 1 month or more. RESULTS: Compared with the general population, a smaller proportion of Aboriginal and Torres Strait Islander daily smokers had ever tried to quit (TATS, 69% v ITC, 81.4%), but attempts to quit within the past year were similar (TATS, 48% v ITC, 45.7%). More Aboriginal and Torres Strait Islander daily smokers than those in the general population reported sustaining past quit attempts for short periods only. Aboriginal and Torres Strait Islander smokers whose local health services had tobacco control resources were more likely to have tried to quit, whereas men and people who perceived they had experienced racism in the past year were less likely. Younger smokers, those who had gone without essentials due to money spent on smoking, and those who were often unable to afford cigarettes were more likely to have tried to quit in the past year, but less likely to have ever sustained an attempt for 1 month or more. Smokers who were unemployed, those who had not completed Year 12 and those from remote areas were also less likely to sustain a quit attempt. CONCLUSIONS: Existing comprehensive tobacco control programs appear to be motivating Aboriginal and Torres Strait Islander smokers to quit but do not appear to overcome challenges in sustaining quit attempts, especially for more disadvantaged smokers and those from remote areas.

Talking About The Smokes: a large-scale, community-based participatory research project.

OBJECTIVE: To describe the Talking About The Smokes (TATS) project according to the World Health Organization guiding principles for conducting community-based participatory research (PR) involving indigenous peoples, to assist others planning large-scale PR projects. DESIGN, SETTING AND PARTICIPANTS: The TATS project was initiated in Australia in 2010 as part of the International Tobacco Control Policy Evaluation Project, and surveyed a representative sample of 2522 Aboriginal and Torres Strait Islander adults to assess the impact of tobacco control policies. The PR process of the TATS project, which aimed to build partnerships to create equitable conditions for knowledge production, was mapped and summarised onto a framework adapted from the WHO principles. MAIN OUTCOME MEASURES: Processes describing consultation and approval, partnerships and research agreements, communication, funding, ethics and consent, data and benefits of the research. RESULTS: The TATS project involved baseline and follow-up surveys conducted in 34 Aboriginal community-controlled health services and one Torres Strait community. Consistent with the WHO PR principles, the TATS project built on community priorities and strengths through strategic partnerships from project inception, and demonstrated the value of research agreements and trusting relationships to foster shared decision making, capacity building and a commitment to Indigenous data ownership. CONCLUSIONS: Community-based PR methodology, by definition, needs adaptation to local settings and priorities. The TATS project demonstrates that large-scale research can be participatory, with strong Indigenous community engagement and benefits.

Tobacco control policies and activities in Aboriginal community-controlled health services.

OBJECTIVES: To describe tobacco control policies and activities at a nationally representative sample of Aboriginal community-controlled health services (ACCHSs). DESIGN, SETTING AND PARTICIPANTS: The Talking About The Smokes (TATS) project used a quota sampling design to recruit 34 ACCHSs around Australia. Between April 2012 and October 2013, a representative at each ACCHS completed a survey about the service's tobacco control policies and activities. Questions about support for smoke-free policies were also included in the TATS project survey of 2435 Aboriginal and Torres Strait Islander members of the communities served by the ACCHSs. MAIN OUTCOME MEASURES: ACCHS tobacco control policies and activities. RESULTS: Thirty-two surveys were completed, covering 34 sites. Most ACCHSs (24/32) prioritised tobacco control "a great deal" or "a fair amount", and all services had smoke-free workplace policies. Most had staff working on tobacco control and had provided tobacco control training within the past year. A range of quit-smoking information and activities had been provided for clients and the community, as well as extra smoking cessation support for staff. There was strong support for smoke-free ACCHSs from within the Aboriginal communities, with 87% of non-smokers, 85% of ex-smokers and 77% of daily smokers supporting a complete ban on smoking inside and around ACCHS buildings. CONCLUSIONS: The high level of commitment and experience within ACCHSs provides a strong base to sustain further tobacco control measures to reduce the very high smoking prevalence in Aboriginal and Torres Strait Islander populations.

Smoking among a national sample of Aboriginal and Torres Strait Islander health service staff.

OBJECTIVE: To examine smoking among Aboriginal and Torres Strait Islander staff of Aboriginal community-controlled health services (ACCHSs). DESIGN, SETTING AND PARTICIPANTS: The Talking About The Smokes (TATS) project surveyed 374 Aboriginal and Torres Strait Islander staff at a national sample of 31 ACCHSs, from April 2012 to October 2013. We made comparisons with adult participants in the 2008 National Aboriginal and Torres Strait Islander Social Survey (NATSISS) and with 1643 smokers in a community sample of 2522 Aboriginal and Torres Strait Islander people also surveyed in the TATS project. MAIN OUTCOME MEASURES: Smoking status, smoking behaviour at work, quitting behaviour, attitudes and beliefs about smoking and quitting. RESULTS: Aboriginal and Torres Strait Islander ACCHS staff had a lower smoking prevalence than among all Aboriginal and Torres Strait Islander adults surveyed in the NATSISS (38% v 49.8%), but this difference was smaller when compared with only employed adults (38% v 44.8%). Staff smokers had higher odds than smokers in their communities of ever trying to quit (odds ratio [OR], 2.1; 95% CI, 1.1-3.7), of having often noticed anti-smoking advertising (OR, 2.8; 95% CI, 1.4-5.6), and of having used stop-smoking medications (OR, 3.0; 95% CI, 1.6-5.7), often with the support of their ACCHS. There was a significant association (P < 0.001) between the smoking status of Aboriginal and Torres Strait Islander staff and their confidence in talking to others about smoking and quitting; ex-smokers were most likely to report being confident. Most Aboriginal and Torres Strait Islander staff who smoked (74%) agreed that being a non-smoker sets a good example to patients at their health service, and most did not smoke with patients or at work where patients could see them. CONCLUSION: Smoking prevalence among Aboriginal and Torres Strait Islander ACCHS staff is only modestly lower than among other employed Aboriginal and Torres Strait Islander people. Given that ex-smokers feel more confident to help others quit than any other group, smoking cessation in ACCHS staff is a useful contributor to reducing community smoking rates.

Research methods of Talking About The Smokes: an International Tobacco Control Policy Evaluation Project study with Aboriginal and Torres Strait Islander Australians.

OBJECTIVE: To describe the research methods and baseline sample of the Talking About The Smokes (TATS) project. DESIGN: The TATS project is a collaboration between research institutions and Aboriginal community-controlled health services (ACCHSs) and their state and national representative bodies. It is one of the studies within the International Tobacco Control Policy Evaluation Project, enabling national and international comparisons. It includes a prospective longitudinal study of Aboriginal and Torres Strait Islander smokers and recent ex-smokers; a survey of non-smokers; repeated cross-sectional surveys of ACCHS staff; and descriptions of the tobacco policies and practices at the ACCHSs. Community members completed face-to-face surveys; staff completed surveys on paper or online. We compared potential biases and the distribution of variables common to the main community baseline sample and unweighted and weighted results of the 2008 National Aboriginal and Torres Strait Islander Social Survey (NATSISS). The baseline survey (Wave 1) was conducted between April 2012 and October 2013. SETTING AND PARTICIPANTS: 2522 Aboriginal and Torres Strait Islander people in 35 locations (the communities served by 34 ACCHSs and one community in the Torres Strait), and 645 staff in the ACCHSs. MAIN OUTCOME MEASURES: Sociodemographic and general health indicators, smoking status, number of cigarettes smoked per day and quit attempts. RESULTS: The main community baseline sample closely matched the distribution of the Aboriginal and Torres Strait Islander population in the weighted NATSISS by age, sex, jurisdiction and remoteness. There were inconsistent differences in some sociodemographic factors between our sample and the NATSISS: our sample had higher proportions of unemployed people, but also higher proportions who had completed Year 12 and who lived in more advantaged areas. In both surveys, similar percentages of smokers reported having attempted to quit in the past year, and daily smokers reported similar numbers of cigarettes smoked per day. CONCLUSION: The TATS project provides a detailed and nationally representative description of Aboriginal and Torres Strait Islander smoking behaviour, attitudes, knowledge and exposure to tobacco control activities and policies, and their association with quitting.

Tasmanian Aborigines step up to health: evaluation of a cardiopulmonary rehabilitation and secondary prevention program.

BACKGROUND: Although the burden of cardiopulmonary diseases in the Aboriginal community is high, utilisation of rehabilitation services has been poor. We evaluated the uptake and effectiveness of a cardiovascular and pulmonary rehabilitation program specifically designed and provided for the Aboriginal community, by the Tasmanian Aboriginal Centre, for people with diagnosed chronic heart or respiratory disease and those at high risk of developing such conditions. METHODS: Participants had established chronic obstructive pulmonary disease, ischaemic heart disease or chronic heart failure or were at high risk of developing such diseases because of multiple risk factors. Rehabilitation programs (n = 13) comprised two exercise and one education session per week over eight weeks. Data, collected at baseline and on completion, included health status, risk factors, attendance, anthropometric measurements, physical capacity and quality of life. Data from participants who attended at least one program session were analysed. Qualitative written feedback from participants and staff was analysed thematically. RESULTS: Of 92 participants (39% with an established disease diagnosis), 72 provided follow-up data. Participants lost weight, and waist circumference decreased (mean -3.6 cm, 95% confidence interval (CI)-2.5 to -4.7). There were clinically significant improvements in six-minute walk distance (mean 55.7 m, 95% CI 37.8 to 73.7) and incremental shuttle walk (mean 106.2 m, 95% CI 79.1 to 133.2). There were clinically significant improvements in generic quality of life domains, dyspnoea and fatigue. Generally, the improvements in participants with established cardiac or respiratory diseases did not differ from that in people with risk factors. Analysis of qualitative data identified three factors that facilitated participation: support from peers and health workers, provision of transport and the program structure. Participants' awareness of improvements in their health contributed to ongoing participation and positive health outcomes, and participants would recommend the program to family and friends. CONCLUSION: A cardiopulmonary program, which included exercise and education and met national guidelines, was designed and delivered specifically for the Aboriginal community. It increased participation in rehabilitation by Aborigines with, or at high risk of, established disease and led to positive changes in health behaviours, functional exercise capacity and health related quality of life.

Quality improvement in practice: improving diabetes care and patient outcomes in Aboriginal Community Controlled Health Services.

BACKGROUND: Management of chronic disease, including diabetes, is a central focus of most Aboriginal Community Controlled Health Services (ACCHSs) in Australia. We have previously demonstrated that diabetes monitoring and outcomes can be improved and maintained over a 10-year period at Derby Aboriginal Health Service (DAHS). While continuous quality improvement (CQI) has been shown to improve service delivery rates and clinical outcome measures, the process of interpreting audit results and developing strategies for improvement is less well described. This paper describes the evaluation of care of patients with type 2 diabetes mellitus (T2DM) and features of effective CQI in ACCHSs in the remote Kimberley region of north Western Australia. METHODS: Retrospective audit of records for Aboriginal and Torres Strait Islander primary care patients aged ≥15 years with a confirmed diagnosis of T2DM at four Kimberley ACCHSs from 1 July 2011 to 30 June 2012. Interviews with health service staff and focus group discussions with patients post audit. MAIN OUTCOME MEASURES: diabetes care related activities, clinical outcome measures and factors influencing good diabetes related care and effective CQI. RESULTS: A total of 348 patients from the four ACCHSs were included in the study. Clinical care activities were generally high across three of the four health services (at least 71% of patients had cholesterol recorded, 89% blood pressure, 84% HbA1c). Patients from DAHS had lower median cholesterol levels (4.4 mmol/L) and the highest proportion of patients meeting clinical targets for HbA1c (31% v 16% ACCHS-3; P = 0.02). Features that facilitated good care included clearly defined staff roles for diabetes management, support and involvement of Aboriginal Health Workers, efficient recall systems, and well-coordinated allied health services. Effective CQI features included seamless and timely data collection, local ownership of the process, openness to admitting deficiencies and willingness to embrace change. CONCLUSIONS: Well-designed health care delivery and CQI systems, with a strong sense of ownership over diabetes management led to increased service delivery rates and improved clinical outcome measures in ACCHSs. Locally run CQI processes may be more responsive to individual health services and more sustainable than externally driven systems.

A snapshot of patients' perceptions of oncology providers' cultural competence.

In this paper, we describe an anonymous cross-sectional survey with a sample of 100 racially diverse adult oncology patients using a newly developed patient-reported measure of providers' cultural competence, the Physicians' Cultural Competence for Patient Satisfaction Scale (PCCPS) [1, 2], which was developed using a US midwestern sample of primary care patients. Our primary aims were to examine the reliability of the PCCPS in a more racially diverse urban oncology clinical setting and to identify salient domains of oncology provider cultural competence based on patient-reported satisfaction with direct clinical encounters. Results suggest that patient-reported satisfaction was significantly associated with one of the four domains measured by the PCCPS, physician's patient-centered cultural competence (r = 0.40, p = 0.01), and female patients were more satisfied (t (91) = 5.23, p = 0.02). The PCCPS demonstrated good reliability in an urban diverse cancer patient population. Results help to inform the development of clinical tools that can improve oncology providers' cultural competency.

"I knew from day one that i'm either gonna fight this thing or be defeated": African American parents' experiences of coping with breast cancer.

Few studies have explored how African American parents navigate breast cancer while parenting their school-age children. This focus-group study examined how African American parents cope with the diagnosis and treatment of breast cancer. Three focus groups were conducted with nine African American parents coping with breast cancer. Interviews were analyzed using content analysis. Participants described a variety of coping strategies. Five primary themes emerged: involvement in community of support, relationship with cancer, being the family emotional regulator, highlighting positives, and spirituality. Findings suggest that providers can improve the care of African American breast cancer patients and their families by facilitating patient advocacy, encouraging patients to reach out to various support systems, discussing with patients their children's functioning, and integrating spirituality into available support programs. Developing more culturally sensitive support groups that promote shared family understanding and open communication among African American parents and their children can facilitate better coping.

A culturally adapted family intervention for African American families coping with parental cancer: outcomes of a pilot study.

OBJECTIVES: The primary objective of this 2-year pilot study was to evaluate the effectiveness of a culturally adapted family intervention in improving family communication among African American parents coping with cancer and their school-age children. A secondary objective was to determine its impact on other symptoms of psychosocial distress (depression and anxiety). The third objective was to assess for acceptability and feasibility. METHODS: Using a two-arm pre-intervention and post-intervention prospective design, 12 African American families received five bi-monthly sessions of either a culturally adapted family intervention (n=7 families) or psycho-education treatment (n=5 families). Parents and their children completed pre-intervention and post-intervention questionnaires assessing perceptions of family communication, quality of their relationship, and symptoms of depression. School-age children additionally completed a questionnaire assessing their levels of anxiety. Consumer satisfaction was also evaluated at post-intervention. RESULTS: Parents and school-age children who completed the culturally adapted family intervention reported significantly better communication with each other and were more satisfied compared with the psycho-education control group. No changes were noted in symptoms of anxiety or depression. The culturally adapted family intervention was acceptable based on our findings, families' feedback, and rates of retention. Feasibility is uncertain because our oncology clinic approach to recruitment was slower than expected. CONCLUSIONS: Providing culturally adapted family intervention programs to African American families who are coping with parental cancer may result in improved family communication. This pilot study serves as the first step in the development of culturally adapted family intervention programs to help African American families cope with parental cancer.

African American parents' experiences navigating breast cancer while caring for their children.

African American parents who are navigating breast cancer while parenting their school-age children are an understudied population. We used family systems and sociocultural theories to conduct three focus groups with a total sample of 9 African American parents to understand how they cared for their school-age children (ages 11 to 18) while coping with the diagnosis and treatment of breast cancer. Our content analysis of these focus groups yielded themes that described a variety of ways they protected their children from the emotional consequences of breast cancer. Seven primary themes emerged: (a) increased desire to protect their children, (b) parental concerns for children's coping, (c) openness and transparency with children, (d) reliance on children for support, (e) calibration of their own responses, (f) use of the illness experience as a teachable moment for children, and (g) reliance on others for parenting support. Clinicians and researchers can improve their care by developing culturally sensitive family intervention programs that promote family resilience.

Lessons learned in developing a culturally adapted intervention for African-American families coping with parental cancer.

Prior clinical research supports the effectiveness of cancer support groups for cancer patients and their families, yet African-American families continue to be underrepresented in cancer support groups and in cancer clinical research studies. In order to fill this gap, we developed and evaluated a culturally adapted family support group for African-American families coping with parental cancer. We encountered unexpected challenges in overcoming barriers to recruitment, partnering with oncology providers, and building trust with the African-American community and African-American families coping with parental cancer. We describe actions taken during the two phases of this study and lessons learned along the way about recruiting and engaging African-American families in cancer support group studies, partnering with oncology providers, networking with the African-American community, and the importance of demonstrating cultural sensitivity to overcome the understandable historical legacy of mistrust.

'We are survivors too': African-American youths' experiences of coping with parental breast cancer.

OBJECTIVE: To explore how African-American youth cope with the diagnosis and treatment of parental breast cancer, and to identify culturally sensitive ways to recruit and sustain participation of this vulnerable population in intervention programs. METHODS: Three qualitative focus groups which were part of a larger study were conducted with 12 African-American youth between the ages of 11 and 18, currently coping with parental breast cancer from the Northeastern part of the United States. Interviews were audio-taped and transcribed verbatim, and analyzed using content analysis. RESULTS: African-American youth described fear and uncertainty about the mortality of their parent, their unpredictable future, and discomfort in negotiating breast cancer's relationship with the entire family. Four primary themes emerged which were coping with cancer, it affects us too, changes in family functioning, and growth through pain. African-American youth described feeling overlooked by their families and oncology staff treating their parents, often being in the role of protecting their parents physically and emotionally. CONCLUSIONS: This study suggests that clinicians can improve the care of African-American breast cancer patients and their adolescent children by being more family-centered. Adolescents need more developmentally appropriate preparation for the family changes likely to occur when a parent is diagnosed and treated for breast cancer. Developing a support group comprised of other youth coping with parental breast cancer from diagnosis throughout treatment was described as a preferred intervention to promote a shared understanding in order to overcome feelings of isolation, worry, and fear.

"They paid no mind to my state of mind": African American breast cancer patients' experiences of cancer care delivery.

This qualitative study describes experiences of cancer care delivery for nine African-American breast cancer patients. Three focus groups captured participants' experiences with the diagnosis and treatment of breast cancer and parenting their children. Spontaneous accounts describing their interactions with oncology staff were reported by all breast cancer patients. Content analysis revealed five themes: interaction with physicians, power and authority of physicians, collaboration between physicians and mental health professionals, navigating the system, and involvement of the family in the treatment process. These themes may help in developing culturally sensitive training programs for oncology providers to improve the quality of cancer care.