"Being ill was the easy part": exploring cancer survivors' reactions to perceived challenges in engaging with primary healthcare.

PURPOSE: Cancer survivors experience barriers to primary healthcare (PHC) services. The aim was to explore reactions to and opinions about perceived challenges associated with PHC access and quality among cancer survivors in Sweden, including how they have acted to adapt to challenges. METHODS: Five semi-structured focus group interviews were conducted with cancer survivors (n = 20) from Skåne, Sweden, diagnosed with breast, prostate, lung, or colorectal cancer or malignant melanoma. Focus groups were mixed in regard to diagnosis. Data were analysed using a descriptive template analysis approach. RESULTS: In light of perceived challenges associated with access to adequate PHC, participants experienced that they had been forced to work hard to achieve functioning PHC contacts. The demands for self-sufficiency were associated with negative feelings such as loneliness and worry. Participants believed that cancer survivors who lack the ability to express themselves, or sufficient drive, risk missing out on necessary care due to the necessity of being an active patient. CONCLUSIONS: The findings highlight negative patient experiences. They have implications for the organization of care for cancer survivors as they indicate a need for more efficient post-treatment coordination between cancer specialist care and PHC providers, as well as increased support for patients leaving primary cancer treatment.

Primary healthcare professionals' attitudes toward patients with current or previous drug use.

OBJECTIVE: People with current or previous drug use (PCPDU) often lack long-term healthcare contacts in primary healthcare (PHC). While international research has shown negative attitudes toward PCPDU in healthcare, PHC professionals' attitudes toward PCPDU have not been assessed in Sweden. The aim of this study was to investigate PHC professionals' attitudes to PCPDU, and to compare attitudes toward people who actively use illicit drugs with those toward patients in opioid assisted treatment (OAT). DESIGN: In this survey study, respondents were asked for background data, and their attitudes toward patients using illicit drugs, OAT patients and patients with depression were assessed by using an adapted version of the Medical Condition Regard Scale (MCRS). SETTING AND SUBJECTS: Nurses and physicians at primary healthcare centers (PHCCs) in Skåne, Sweden. MAIN OUTCOME MEASURES: Mean MCRS scores, dichotomized responses to MCRS items, and associations between MCRS score and background covariates (age, sex, profession and duration of professional experience). RESULTS: Eighty-nine PHC professionals from 13 PHCCs responded (approximately 39% of relevant workforce). The median MCRS score was 44 for patients with illicit drug use and patients in OAT, and 51 for patients with depression. Drug use and OAT displayed similar minimum, maximum and interquartile range values as well, while scores regarding depression displayed a higher minimum value and smaller spread. No significant associations were found between background covariates and MCRS scores for either drug use or OAT. CONCLUSIONS: The results indicate widespread negative attitudes to PCPDU, with implications for health equity in the clinic. Further studies are needed to see if the results reflect attitudes in Swedish PHC in general.Key PointsPeople with current or previous drug use (PCPDU) often lack necessary primary healthcare (PHC) and are commonly subject to prejudice.Swedish PHC professionals held more negative attitudes toward PCPDU than toward patients with depression.Attitudes toward patients with active drug use and patients in opioid assisted treatment (OAT) were almost identical.Study findings have potential implications for the health of PCPDU as well as health equity in the clinic.Widespread negative attitudes to PCPDU in our sample indicate the need of larger-scale studies of attitudes toward PCPDU in Swedish PHC.

Barriers to and facilitators of screening for cervical and breast cancer: Experiences of non-adherent women with current or previous drug use.

Objective: Women with current or previous drug use (WCPDU) have an increased risk of poor cervical and breast cancer outcomes, and low participation in screening for these cancer forms. The aim of this study was to assess self-reported barriers to and facilitators of cervical and breast cancer screening, among WCPDU. Methods: A survey based on results from a previous qualitative study about WCPDUs experiences of cancer screening was distributed to WCPDU at six opioid agonist treatment (OAT) clinics and one needle exchange program (NEP) in Malmö, Sweden, and through the Drug Users Union in Stockholm, Sweden. Data on barriers to and facilitators of cancer screening reported by 222 non-adherent WCPDU was analyzed by descriptive statistics. The barriers were structured according to an established model of healthcare access. Results: The most frequently reported barriers to cervical as well as breast cancer screening were non-receipt of screening invitations (36 % and 25 %, respectively), trouble remembering the appointment (27 % and 30 %) and other priorities (26 % and 29 %). Common suggested facilitators for both cervical and breast cancer screening were screening access at, e.g., a NEP or OAT clinic (45 % and 40 %) and practical support to attend the screening appointment (40 % and 38 %). Conclusions: In contrast to general population women, WCPDU report mainly practical barriers to cervical and breast cancer screening. However, NEP participants frequently reported experience of stigma and poor reception as barriers to screening. Interventions to minimize barriers to screening are crucial to decrease the increased cancer morbidity and mortality among WCPDU.

Participation in screening for breast and cervical cancer among women with current or previous drug use: a survey study.

BACKGROUND: Women with current or previous drug use (WCPDU) have an increased risk of poor breast and cervical cancer outcomes. Screening is known to decrease the mortality of these common cancer forms, but screening participation has been sparsely investigated among women with drug dependency. The aim of this study was to assess participation in screening for breast and cervical cancer among WCPDU. METHODS: We recruited WCPDU to a survey study, from six opioid substitution treatment (OST) clinics and one needle exchange program (NEP) in Malmö, Sweden, and through the Drug Users Union in Stockholm, Sweden. The survey was constructed according to results from focus group discussions about cancer screening in a sample of women in OST. Survey data were analyzed using descriptive statistics. We analyzed associations between non-compliance to screening and healthcare contact (OST, NEP or none) by logistic regression analysis; unadjusted and adjusted for age, native language, housing situation, educational attainment and main source of income. RESULTS: A total of 298 women (median age 43 years) responded to the survey. The self-reported compliance with cancer screening recommendations was 29% for breast cancer screening and 41% for cervical cancer screening. Non-compliance with cervical cancer screening was associated with NEP participation in univariate but not multivariate analysis. We did not find an association between non-compliance with breast cancer screening and healthcare contact. Non-compliance with screening for cervical cancer was also associated with unstable housing in univariate and multivariate analyses, and inversely associated with increasing age in a univariate analysis. Non-compliance with breast cancer was associated with unstable housing in a univariate analysis, and inversely associated with not having Swedish as a native language in a multivariate analysis. CONCLUSION: The self-reported compliance with the national cancer screening programs for breast cancer and cervical cancer of WCPDU is notably lower than in the Swedish general population. Women with unstable housing seem to be particularly vulnerable to non-compliance with cancer screening. Interventions to minimize barriers to cancer screening are crucial to decrease the increased cancer morbidity and mortality among WCPDU.

Screening for breast and cervical cancer among OST patients: a qualitative study of barriers and suggested interventions to increase participation.

PURPOSE: Women with current or previous drug use are at risk of poor breast and cervical cancer outcomes. While screening is known to decrease cancer mortality, screening participation is sparsely investigated among drug dependent women. The aim of this study was to explore experiences of breast and cervical cancer screening-including barriers and suggested interventions to promote increased participation-among women in opioid substitution treatment (OST). METHODS: Three focus group interviews were conducted at one OST clinic in Malmö, Sweden. The interviews were moderated by OST staff, assisted by a researcher. A descriptive qualitative analysis was carried out using a template analysis approach, employing a model of healthcare access to organize the description of barriers. RESULTS: The 11 participants reported several barriers to screening access, affecting the perceived need of screening and the opportunities to seek and reach screening services. Some barriers appear to be specific to women with previous or current drug use. Suggested interventions were moral and practical support, integrated/specialized delivery of screening services, and enhanced screening invitation procedures. CONCLUSIONS: The study findings provide insight to difficulties with screening compliance among women with current or previous drug use, and provide a knowledge base for quantitative and intervention studies.

The role of primary care in the cancer care continuum: a qualitative study of cancer survivors' experiences.

OBJECTIVE: To explore how cancer survivors have experienced their contacts with primary care after being diagnosed with cancer, focusing on the integration between cancer specialist and primary care, and participants' views on what could make primary care services better at catering to the needs of cancer survivors. DESIGN: A qualitative study in which data was collected through semi-structured digital focus group interviews and analyzed using a template analysis approach. SETTING AND SUBJECTS: Adult residents of Skåne, Sweden, who had been diagnosed with and initiated treatment for either of five common cancer forms, recruited through patient advocacy groups. MAIN OUTCOME MEASURES: A qualitative description of participants' experiences and perceptions as expressed in focus group interview data. RESULTS: Most participants felt that primary care services had not played a significant role for them, despite patterns of both increased and unmet health needs. Insufficient coordination and communication with specialist cancer care, low availability, lacking personal continuity, low cancer competence and lacking commitment to cancer-related needs were presented as barriers to satisfactory primary care. A strengthened bond between cancer and primary care services, privileged access, and holistic perspectives were all suggested as measures to make primary care more suitable to cancer survivors' needs. CONCLUSION: The study suggests that cancer survivors experience a range of issues that hinders primary care services from playing a productive role in the cancer care process. The results speak for a need for interventions to remove barriers to satisfactory primary care contacts in this group of patients.KEY POINTSThe growing number of cancer survivors highlights the role of primary care services in the cancer care continuum.Despite the presence of unmet needs, few cancer survivors felt that primary care services had been significant to their care.Survivors identified a number of barriers to satisfactory primary care, including lacking coordination and communication between cancer and primary care.Strengthened links between healthcare services, privileged access, and holistic perspectives were suggested to improve primary care delivery for cancer survivors.

Perceived healthcare stigma among patients in opioid substitution treatment: a qualitative study.

BACKGROUND: People with substance use disorders (SUD) including patients in opioid substitution treatment (OST) are subject to stigma, and have generally poor health and barriers towards seeking healthcare. Experience of stigma might negatively affect healthcare seeking, but this topic is sparsely investigated. The aim of this study was to explore OST patients' past and present experiences of substance use stigma in healthcare settings, in order to provide insight into the challenges that people with opioid use disorder may face when using health services, and the strategies they use to cope with them. METHODS: Six focus groups with 23 OST patients were moderated by OST staff, and conducted with a questioning route focusing on health literacy. Experiences associated with stigma and its consequences that were spontaneously brought up by participants were assessed in a secondary analysis using a thematic approach. RESULTS: Experiences of stigma from a wide range of healthcare settings were reported. Medical records and patients' oral information regarding substance use, OST medication or hepatitis C infection were identified as circumstances bringing unwanted attention to the SUD. Participants reported various forms of poor treatment, believed to reflect views of people with SUD as morally culpable, intimidating, curious, untrustworthy and less valuable than other patients, sometimes with tangible effects on the quality of healthcare. Stigma in healthcare settings affected healthcare seeking behaviors, and could result in patients concealing their OST status or substance use history. CONCLUSION: This study highlights several aspects of perceived healthcare stigma that can shed light on difficulties that OST patients might experience when navigating the healthcare system. The results implicate a need to investigate attitudes towards OST patients, and the aptitude to deal with patients with SUD, among healthcare professionals, as well as a need for interventions addressing knowledge deficits and issues tied to values and patient reception among healthcare staff.

Health Literacy among Swedish Patients in Opioid Substitution Treatment: A Mixed-Methods Study.

BACKGROUND: Poor health and unmet healthcare needs is common among people with substance use disorder (SUD) including patients in opioid substitution treatment (OST). Low health literacy (HL) is associated with poverty, low education and physical limitations, but is unexplored in an OST context. METHODS: Mixed-methods were used. Participants were consecutively recruited by clinic staff or researcher, from five OST clinics in Malmö, Sweden, during September - November 2019. HL level was measured through HLS-EU-Q16 (n?=?286). Self-reported socioeconomic correlates of HL were analyzed through logistic regression. Patients' experiences of HL-related problems were assessed through six focus group interviews (n?=?23) moderated by an OST employee. RESULTS: While 46% had sufficient HL (13-16 points of maximum 16), 32% did not receive a HL score due to too many missing answers. No correlates of sufficient HL level were found. Missing HL level was associated with low educational attainment (Ajusted odds ratio [AOR] 1.94; 95% Confidence interval [CI] 1.13-3.32) and negatively associated with employment (AOR 0.28; 95% CI 0.11-0.71). Qualitative data revealed a diversity in participants' self-assessed capabilities, and problems associated with access, comprehension, trust and dependency on addiction-specific services. CONCLUSIONS: This study highlights that HL level is low, and identifies a number of concrete problems related to HL in the studied population. The results implicate a need for tailored interventions regarding health information among OST patients.