Access to cancer services – do culture and ethnicity make a difference?

This module discusses the diverse cultural needs of people affected by cancer and how those needs can be assessed and met. The UK experience with Black or Minority Ethnic (BME) communities will be used to explore the issues of awareness of and detection of cancer.     

Quality of life after thyroid cancer: An assessment of patient needs and preferences for information and support

Background. In this article, we desscribe the quality of life and central information and support needs of people with thyroid cancer. We also describes patients’ preferences for services to address their needs. This report may help patients to anticipate how thyroid cancer will affect them and inform physicians on useful ways to help address their patients’ needs. Methods. We collected data through a survey (n=62) of people who had been treated for thyroid cancer. Results. Most respondents indicated that quality of life was quite good, and most of their information needs were adequately addressed during routine care. However, respondents also indicated a desire for ongoing access to information, including information about lifestyle factors that might affect risk of recurrence, signs and symptoms of recurrence, and recent developments in thyroid cancer diagnostics and treatments. They also reported some unmet social and emotional support needs. Respondents reported a strong preference for gaining access to information through convenient resources such as the Internet. Conclusions. Patient care following thyroid cancer treatment could be improved by providing ongoing education about lifestyle factors related to cancer risk, disease surveillance, and resources for treating and coping with cancer. Health care providers should become familiar with local and Internet-based sources of information and support related to thyroid cancer to improve patient access to this information.     

The role of community-based and philanthropic organizations in meeting cancer patient and caregiver needs

We examined information from community-based and philanthropic organizations to document the cancer-related services that are currently available, establish which services are still needed, and determine who utilizes these formal support networks. In Phase I, 32 of 41 eligible organizations participated in a survey conducted from December 1999 to March 2000. The most common mission focus among participating organizations was information/referral-centered. The most common services provided were referrals to information resources and provision of cancer-related information. Only two of the organizations in Phase I provided client demographic information and both indicated that client populations were predominantly white, female, and over age 40. Phase II of the study involved analyzing patient data from Cancer Care, Inc., a national service organizations for cancer patients. Between 1983 and 1997, there were 2,714 prostate cancer patients and 9,451 breast cancer patients included in the Cancer Care database. Their most commonly reported problems were related to personal adjustment to illness, financial, home care, and transportation needs. There were significant differences in problems reported depending upon age and disease status. In addition, the results of this study support the idea that those at highest risk for developing and dying of cancer are the least likely to utilize formal support networks. Further, a gap in service provision for assistance with practical needs (e.g., transportation, home care, child care, psychosocial support) was identified. Due to the increasing use of outpatient care for cancer patients, a greater demand for practical assistance can be expected in the future. The availability of practical services will need to be increased in order to effectively meet cancer patient needs.     

Supportive care of rural women with breast cancer in Tasmania, Australia: changing needs over time

Providing for patients' psychosocial needs is a potential means of minimising cancer morbidity. Needs assessments can guide responsive patient-centred care. A longitudinal survey of women with early breast cancer consulting a breast nurse in a primarily rural state of Australia was undertaken to measure unmet supportive care needs, identify changes in unmet needs across time and compare results with previous studies. Needs assessments were completed with the Supportive Care Needs Survey (SCNS) at 1 month (n = 74) and 3 months (n = 83) post-diagnosis. Access to services was also examined. High levels of psychological and health system and information needs were identified at 1 month post-diagnosis, but these decreased significantly at 3 months post-diagnosis. Sexuality domain needs increased significantly during the same time. Compared to a previous SCNS study of rural women with breast cancer, unmet supportive care needs in this study were significantly lower than previously reported, although assistance with energy levels (i.e. fatigue) continues to be an unmet need for women with breast cancer. Results suggest there have been positive cultural changes within healthcare systems, specifically in better informing patients and providing support. Although services appear to be more responsive to breast cancer patients, significant unmet needs still exist.     

Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines

Cancer information services are a highly accessible source of support for people affected by cancer. To date the nature and extent of distress experienced by such callers and their unmet support needs have not been well described. A cross-sectional survey of 354 cancer patients and 336 carers who reported elevated distress on contact with a cancer information service assessed socio-demographic variables; anxiety, depression and somatization; unmet supportive care needs; cancer-specific distress; presenting problems; post-traumatic growth. Adjustment to cancer was most commonly reported; followed by anxiety. In all, 53.4% of patients and 45.2% of carers reached caseness in anxiety, depression or somatization. Carers had higher distress ratings and intrusive thinking compared to patients; whereas patients had higher somatization. For patients, most unmet supportive care needs were psychological; for carers unmet needs were related to health care services and information related to the person diagnosed with cancer. Being single, unemployed, in treatment, having higher initial distress scores, higher intrusion and avoidance predicted poorer outcomes. Information service frameworks should include distress screening and clear triage and referral processes for psychological care.     

The Psychosocial Oncology Learning Assessment: A Province-Wide Survey of Cancer Care Providers’ Learning Needs

A psychosocial oncology learning needs assessment was developed and offered online to cancer care providers in a variety of settings across all health regions in British Columbia. The purpose was to better understand the psychosocial learning needs of cancer care providers and to use this knowledge to shape continuing education priorities. Respondents' preferred learning formats, access to technology and barriers to accessing psychosocial learning opportunities were also assessed. Cancer care providers including radiation therapists, social workers, dieticians, pharmacists, physicians and nurses in both community and agency settings were surveyed. Two hundred and sixty-seven people completed the survey. Key learning needs identified included cultural aspects of care, symptom management, treating the anxious patient, self-care for the professional, care of elderly patients, basic cancer-related medical issues surrounding care and ethics. Community respondents indicated more needs than agency respondents. On-site training was the most preferred learning format, and time constraints were the biggest barrier to accessing learning opportunities. Participants had access to technology. Next steps include conducting key informant and focus group interviews to determine if interest in a learning need is the same as a relevant knowledge and practice gap. This research suggests that cancer care providers are interested in learning more about the psychosocial issues related to cancer care.     

Leveling the playing field: the personal coach program as an innovative approach to assess and address the supportive care needs of underserved cancer patients

Supportive care addresses informational, social, emotional, spiritual, physical, and practical needs that impact the lives of patients and their families. Accessing supportive care services is particularly challenging for patients facing significant financial and social barriers. This report discusses the Personal Coach Program (PCP), which provides specially trained coach navigators of supportive care for cancer patients, with special focus on those facing the above-mentioned barriers. The PCP was piloted with 63 patients treated at the Princess Margaret Hospital in Toronto, Ontario, Canada. Patients faced barriers of language, poverty, culture, social isolation, and literacy. Triangulation was used to compare and contrast multiple sources of quantitative and qualitative evaluation data. Identifying appropriate patients for referral to the PCP was a major challenge. Six categories of unmet needs were identified: practical factors related to daily living, cancer information, emotional support, interaction with the healthcare team, problems with physical health,and factors related to family and friends. Many significant barriers to supportive care and unmet needs are not identified by time-pressured clinical staff in cancer clinics. The PCP helped to identify needs and to improve ability to access services. Participants were highly satisfied with the program and believed it had positive implications for both physical and emotional health. Based on these results, a demonstration model for a supportive-care program is proposed as an integral component of care for all cancer patients, including those at risk for underservice.     

Patients' and professionals' opinions of services for people at an increased risk of colorectal cancer: an exploratory qualitative study

OBJECTIVES: To explore the views and opinions of patients with a family history of colorectal cancer, and of primary and secondary care health professionals, on how to improve current services for individuals with a family history of colorectal cancer. DESIGN: Focus group and interview study. SETTING: Primary and secondary care centres in south east London, UK. PARTICIPANTS: A total of 53 people participated in this qualitative study: 18 individuals with a family history of colorectal cancer were interviewed in three focus groups and 35 health professionals were interviewed either in focus groups or individually. Visual qualitative analysis of transcribed interviews was used to identify the key themes which emerged. MAIN OUTCOME MEASURES: Interviewees' needs, views and opinions of current services and ways to improve them. RESULTS: Several areas of concern were identified. The role of primary care needs to be clarified. Education and information about services should be provided for patients and caregivers and better support is required for those undergoing screening and surveillance. Methods to ensure effective and meaningful risk communication are inadequate and require further exploration. Standardisation of care is required to ensure consistency of advice and treatment. CONCLUSION: These interviews revealed substantial shortfalls in the provision of services for patients at increased genetic risk of colorectal cancer. Current systems for the assessment of risk, delivery of advice, and for surveillance are inconsistent and sometimes maybe inadequate. The role of primary care physicians in service delivery requires clarification. Significant opportunities exist for the development of new, more appropriate models of service to provide better standards of care.     

Care and support needs of children and young people with cancer and their parents

The importance of psychosocial support services for children with cancer and their families is recognised but evaluation of such services is less well developed with little information available about different patterns of provision. This paper provides an overview of psychosocial support children and their families in the UK receive during and after treatment. It reports the results of a postal survey of 303 families, within which parents and children identified their satisfaction with support services and also areas of unmet need. Satisfaction was identified in a range of areas, including medical information and support from nurses and social workers. However, areas of unmet need were also highlighted, especially age appropriate facilities, emotional support and information in different formats. Although British government policy currently seeks to develop standards and guidelines of care throughout the National Health Service, this paper demonstrates that there is still a need to develop psychosocial support services and work towards recently established guidelines in order to ensure that families receive flexible but equitable packages of care and support, wherever treatment is received.     

The meanings of cancer and perceptions of cancer services among South Asians in Luton, UK

Recent research has suggested that there is limited awareness of and information about cancer and cancer services among South Asian communities. This study explores the meanings of cancer and perceptions of cancer services among South Asians living in Luton. Six single-sex focus groups were conducted among the three main South Asian groups in Luton: (1) Punjabi-speaking Muslims originating from Pakistan (Pakistani Punjabi); (2) Sylheti-speaking Muslims originating from Bangladesh (Bangladeshi Sylheti); and (3) Punjabi-speaking Sikhs originating from the Indian Punjab (Indian Punjabi). Overall, it was found that the information relating to cancer for South Asian communities was limited. Participants in the study expressed a keen desire for this information to be made available via their community social networks. This lack of information resulted in low levels of awareness about cancer and related issues. Cancer was often perceived as an incurable disease, a reflection of the fact that access to appropriate services had been experienced at a relatively late stage of the illness. Informed education, therefore, is clearly essential to influence how people manage cancer and access cancer services. This paper describes the challenges that service providers and users face in ensuring effective and informed awareness.     

Understanding Facilitators and Barriers of Online Cancer Information Utilization among Cancer Survivors and their Families: Focus on the Theory of Planned Behavior

Objective: Cancer survivors have various health care needs and are willing to be proactive with their health maintenance. Online information would be a useful resource to guide cancer survivors and their family members. Therefore, identifying the factors that influence Internet searching behaviors among cancer survivors and their family members is a first step toward providing better health care services for cancer care. Methods: We performed focus group interviews that were based on the Theory of Planned Behavior, with thirty-one participants to explore factors related to Internet search behaviors among cancer survivors and their family members. Results: Six themes were identified in the analysis of participant interviews. Attitudes toward searching for health information on the Internet included the themes “Fulfilling unmet needs” and “Confirmation through second opinion.” Themes related to social norms included “a required step for sure” and “helping each other.” In terms of perceived behavioral control, themes included “difficult to choose because of being ‘overwhelmed with information,’” and “complex searching milieu.” Conclusion: It was clear that cancer survivors and their family members had unmet needs for maintaining their health status. They wanted to be informed and actively involved in the decision-making process regarding health management. Consultation and education provided to patients by doctors should not only include information on diet and nutrition but also information on the resulting complications to satisfy their need for reliable health information.     

Perspectives on Psychosocial and Spiritual Cancer Support Services in New Zealand

In New Zealand, support services have been developed in response to patient need but are variable. The benefits of psycho-social-spiritual care in reducing distress and enhancing quality of life for people with cancer and their families are well established yet unmet needs continue to feature. This project aimed to examine how health care professionals assessed for psycho-social-spiritual distress and unmet need, decisions on appropriate support, and identification of barriers in the referral process. A mixed-methods approach was used for this research. The qualitative phase entailed semistructured interviews with health care professionals working in cancer care. The quantitative phase was an online survey of oncologists and nurses. Thematic analysis was carried out by performing a side-by-side analysis of both sets of data. Nurses were most likely to assess for psycho-social-spiritual need and to refer to support services. Despite a clear mandate to provide regular psycho-social-spiritual assessment, there is no consistency of assessment and referral across New Zealand. There are clearly unmet psycho-social-spiritual needs among people affected by cancer in New Zealand, with health care professionals in this study noting structural impediments to adequate supportive care. There is a mismatch between the importance placed on such care and the capacity that is currently available. The results of this study provide evidence that can be used to argue for improvements in the infrastructure, funding allocation and policy that would allow for better psycho-social-spiritual care within the challenging context of increasing numbers of those affected by cancer.     

Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients

BACKGROUND:

Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services.

METHODS:

Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment‐related side effects.

RESULTS:

AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age‐appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services.

CONCLUSIONS:

Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community‐based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs. Cancer 2013. © 2012 American Cancer Society.     

'The greatest thing in the world is the family': the meaning of social support among black Caribbean and white British patients living with advanced cancer

Purpose: Little is known about the perceptions and meanings of social support among black and minority ethnic groups living with advanced cancer in the UK. The aim of this study was to explore social support networks and their meaning among Black Caribbean and White British patients living with advanced cancer. Method: Semi‐structured interviews were conducted with 26 Black Caribbean and 19 White British cancer patients and analysed using the framework approach. Results: In all, 25 of 26 Black Caribbean and 18 of 19 White British participants volunteered views on the presence of social support in their lives. The presence of a spouse or partners was an indispensable feature within the social support networks in both ethnic groups. More Black Caribbean than White British participants referred to the presence of social networks made through their church communities as being a source of practical and emotional support. Conclusions: We recommend that when health and social‐care professionals perform an assessment interview with patients from cultural backgrounds different to their own, opportunities should be made for patients to express information about their social support networks. This will help them to better understand their place alongside statutory services. Spouses and partners should be given greater recognition of their contribution in order to continue with their important role. Copyright © 2011 John Wiley & Sons, Ltd.     

Enabling people with dementia to access and receive cancer treatment and care: The crucial role of supportive networks

ObjectivesDespite cancer and dementia being conditions in which prevalence increases with age, there remains limited research on the cancer treatment and care needs of this population. Our study aimed to address this gap and this paper reports on the role of supportive networks in enabling people with dementia to access cancer treatment and care.Materials and methodsAn ethnographic study involving seventeen people with cancer and dementia, 22 relatives and nineteen oncology staff. It comprised observations (46 h) of and informal conversations during oncology appointments attended by people with dementia and their relatives and semi-structured interviews (n = 37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services. Data were analysed using thematic analysis.ResultsPatients and oncology staff relied on and expected relatives to provide practical and emotional support around cancer treatment and care. Families varied in their ability to provide required support due to extent of the family network, practical issues, knowledge of the patient and their wishes, family conflict and the patient's willingness to accept help. Where no family network was available, support provision was complex and this could compromise access to cancer treatment.ConclusionsPeople with comorbid cancer and dementia rely heavily on a supportive family network to access treatment and care. Oncology services need to assess the supportive networks available to individual patients in developing cancer treatment plans. Urgent consideration needs to be given to how those with no family networks can be appropriately supported.     

The needs of carers of men with prostate cancer and barriers and enablers to meeting them: a qualitative study in England

The aim of this study was to explore the needs of carers of men with prostate cancer and to identify barriers and enablers to meeting these needs. Carers were recruited to focus groups or interviews. These were recorded, transcribed and analysed by two researchers using Nvivo QSR6 and the Framework approach to index, chart and analyse data to identify emergent themes of the needs of carers, and barriers and enablers to meeting these needs. Fifteen carers took part in focus groups and 19 were interviewed. Carers' needs varied and were often unmet because of barriers to existing services. Carers needed: information; emotional support; practical support; effective medical care for the patient. Barriers to carers meeting their needs included: lack of awareness of sources of help; lack of understanding of information; reluctance to ask for help; prioritising the patient's needs. Enablers included better signposting to information and sources of support, and assessment of their needs. Interventions to address these needs should be developed taking account of the barriers and enablers identified here, and the experience of reported interventions for carers of other cancer patients. Carers should be offered an assessment to establish their needs and directed to appropriate sources of help.     

Identifying supportive and unsupportive responses of others: perspectives of African American and Caucasian cancer patients

This study uses focus group methodology to examine supportive and unsupportive responses experienced by African American and Caucasian cancer patients. Supportive responses included practical assistance, as well as people's willingness to listen, maintain a positive attitude, and pray. Unsupportive responses included others' withdrawal behaviors, patients having to support friends/family as they coped, and family/friends limiting patients' independence. Results reflect ways in which mental health providers, social workers, and health care providers can help patients express support needs, as well as how social networks can be better educated about the types of support valued by patients.     

Breast and cervical cancer screening among migrant and seasonal farmworkers: a review

Women constitute about one in five hired farmworkers in the US. Their health may be affected by exposure to unhealthy living and working conditions, by increased exposure to health hazards, by poverty, and by poor utilization of health care and preventive services. About 69% of migrant and seasonal farmworkers were born outside the US, mostly in Mexico and central America, and many speak little English. The health concerns of women who are migrant and seasonal farmworkers include breast and cervical cancer, which can be prevented or controlled through routine screening, but cancer incidence and mortality data for migrant workers are sparse. We reviewed published studies that examined breast and cervical cancer screening in this population. These studies include cross-sectional surveys, health needs assessments, and randomized and non-randomized intervention trials. A review of published studies of cancer screening among women who are migrant and seasonal farmworkers indicates that underutilization of mammograms and Papanicolau (Pap) tests among this population may stem from their limited awareness of the importance of cancer screening and cultural beliefs. Other barriers include cost, lack of health insurance, lack of transportation and child care difficulties. The extent to which results obtained in selected localities are generalizable to other settings is uncertain, but results to date provide important information about possible approaches for increasing cancer screening among women migrant farmworkers.     

The impact of cervical cancer and dysplasia: a qualitative, multiethnic study

STUDY PURPOSE: Cervical cancer (CCA) remains a health challenge nationally and globally. In the US, more than 12,000 women are diagnosed each year with invasive cervical cancer and more than 220,000 are living with a history of this diagnosis (ACS, 2003). This qualitative study aims to examine health related quality of life (HRQOL) from a culturally consistent framework. METHODS: Key-informant interviews (N = 23) and focus group interviews (N = 51) were conducted with a multiethnic sample of cervical cancer survivors (CCS) recruited from hospitals and clinics. ANALYSES AND RESULTS: Content and theme analyses were conducted. Findings indicate that cultural and family factors often promote coping and well-being, but may foster delay in care seeking and self-deprecation, particularly among Latina and Asian CCS. Faith in God was relied on for comfort, strength and healing by many survivors, especially the African Americans and Latinas. Overall, our participants reported moderate HRQOL. However, persistent concerns included treatment side-effects; difficulties accessing quality care; inadequate health insurance, barriers to good physician-patient relationship such as language and doctors' time constraints; insufficient knowledge about CCA due to limited information from medical staff; lack of control over treatments; social support, family well-being, functional and work issues; and sexuality and relationship concerns. Socioeconomic status, ethnicity, cultural beliefs and practices, age and family support dictated the level of cancer-related burden. CONCLUSION: Invasive CCA is primarily a cancer of women who are economically disenfranchised. Women with a CCA diagnosis are disproportionately challenged by lack of resources including quality, affordable health care and psychosocial services. CCS experience persistent medical, psychological, social, and relational concerns. Information concerning CCS is needed, particularly in Spanish, Vietnamese and Korean. There is an urgent need for further research to understand the risk factors, and the social and cultural mediators of cancer-related HRQOL for CCS.