Healthcare System Barriers Research Articles

Exploring how Syrian women manage their health after migration to Germany: results of a qualitative study

BackgroundIn the recent years, the number of Syrians living in Germany increased drastically due to the massive displacement caused by the Syrian conflict. Syrian migrant women in Germany are challenged by both the migration process and the changing of social roles. Seeking out healthcare may be hampered by linguistic and cultural barriers, but the new context may offer opportunities for health and well-being (free access to health care, civil/human rights). Little is known about how Syrian women manage their health after their resettlement in Germany.MethodsIn depth interviews in Arabic were conducted with 9 Syrian women who were recruited through purposive sampling (18–55 years, migrated in 2011–2017, different education levels), focusing on capabilities to control one’s health and to navigate the German healthcare system, and social/environmental barriers and facilitators to effectively manage their health. Interview transcripts were analysed using qualitative content analysis.ResultsThe women reported their health to be impaired by post-migration stressors, such as perceived discrimination, loss of social status and worrying about the future. Many interviewees felt disempowered and incompetent to successfully and actively navigate the German healthcare system, lacking information and not understanding their rights and options under the health insurance plan. The language barrier added to feeling vulnerable. Many women experienced doctors declining to treat them for capacity reasons; when treated, they often did not feel taken seriously or were dissatisfied with the emotional/cultural aspects of care. If possible, Arabic doctors were sought out. Some women, however, described improved resources for health, and appreciated better women’s rights as a source of power.ConclusionsThe lack of information about the structure and offers of the German healthcare system, language and culture specific barriers as well as socio-cultural challenges are undermining the ability of Syrian women to manage their health effectively after their resettlement in Germany. Providing tailored information on the German healthcare system, creating a health-literacy supportive environment, and improving cultural sensitivity in healthcare provision could help Syrian women better utilize medical care offered in Germany.

The core components of cardio-oncology rehabilitation.

The increased efficacy of cancer therapy has resulted in greater cancer survival and increasing number of people with cancer and cardiovascular diseases. The sharing of risk factors, the bidirectional relationship between cancer and cardiovascular diseases and the cardiotoxic effect of chemotherapy and radiotherapy, are the cause of the rapid expansion of cardio-oncology. All strategies to preserve cardiovascular health and mitigate the negative effect of cancer therapy, by reducing the cardiovascular risk, must be pursued to enable the timely and complete delivery of anticancer therapy and to achieve the longest remission of the disease. Comprehensive cardiac rehabilitation is an easy-to-use model, even in cancer care, and is the basis of Cardio-Oncology REhabilitation (CORE), an exercise-based multi-component intervention. In addition, CORE, besides using the rationale and knowledge of cardiac rehabilitation, can leverage the network of cardiac rehabilitation services to offer to cancer patients exercise programs, control of risk factors, psychological support, and nutrition counseling. The core components of CORE will be discussed, describing the beneficial effect on cardiorespiratory fitness, quality of life, psychological and physical well-being, and weight management. Furthermore, particular attention will be paid to how CORE can counterbalance the negative effect of therapies in those at heightened cardiovascular risk after a cancer diagnosis. Barriers for implementation, including personal, family, social and of the health care system barriers for a widespread diffusion of the CORE will also be discussed. Finally, there will be a call-to-action, for randomized clinical trials that can test the impact of CORE, on morbidity and mortality.

Barriers and enablers to providing preventative and early intervention diabetes-related foot care: a qualitative study of primary care healthcare professionals' perceptions.

This study explored the perceived healthcare system and process barriers and enablers experienced by GPs and Credentialled Diabetes Educators (CDEs) in Australian primary care, in the delivery of preventative and early intervention foot care to people with diabetes. A qualitative design with inductive analysis approach was utilised and reported according to the Consolidated Criteria for Reporting Qualitative Studies (COREQ). Semi-structured interviews were conducted with two GPs and 14 CDEs from rural, urban and metropolitan areas of Australia. Participants were from New South Wales, South Australia, Victoria, Western Australia, the Northern Territory and Queensland. Barriers to providing foot care constituted five broad themes: (1) lack of access to footcare specialists and services; (2) education and training insufficiencies; (3) human and physical resource limitations related to funding inadequacies; (4) poor care integration such as inadequate communication and feedback across services and disciplines, and ineffectual multidisciplinary care; and (5) deficient footcare processes and guidelines including ambiguous referral pathways. Enablers to foot care were found at opposing ends of the same spectra as the identified barriers or were related to engaging in mentorship programs and utilising standardised assessment tools. This is the first Australian study to obtain information from GPs and CDEs about the perceived barriers and enablers influencing preventative and early intervention diabetes-related foot care. Findings offer an opportunity for the development and translation of effective intervention strategies across health systems, policy, funding, curriculum and clinical practice, in order to improve outcomes for people with diabetes.

Barriers to access and utilisation of HIV/STIs prevention and care services among trans-women sex workers in the greater Kampala metropolitan area, Uganda

BackgroundTrans-women sex workers bear the greatest brunt of HIV and other sexually transmitted infections (STI). Trans-women are 49 times more at risk of HIV infections compared to the general population. However, they remain underserved and continue to grapple with access to and utilisation of HIV/STI prevention services. This study explored barriers to access and utilisation of HIV/STI prevention services and associated coping mechanisms.MethodsThis exploratory qualitative study was conducted among trans-women sex workers in the Greater Kampala Metropolitan area, Uganda. A total of 22 in-depth interviews, 6 key informant interviews and 9 focus group discussions were conducted to obtain data on barriers to access and utilisation of HIV and other STI prevention and care services, and coping strategies of trans-women sex workers. Data were analysed through thematic analysis using a hybrid of inductive and deductive approaches.ResultsIndividual level barriers to access and utilisation of HIV/STI prevention and care services included internalised stigma and low socio-economic status. Healthcare system barriers included social exclusion and lack of recognition by other key population groups; stigmatisation by some healthcare providers; breach of confidentiality by some healthcare providers; limited hours of operation of some key population-friendly healthcare facilities; discrimination by straight patients and healthcare providers; stockout of STI drugs; inadequate access to well-equipped treatment centres and high cost of drugs. At community level, transphobia hindered access and utilisation of HIV/STI prevention and care services. The coping strategies included use of substitutes such as lotions, avocado or yoghurt to cope with a lack of lubricants. Herbs were used as substitutes for STI drugs, while psychoactive substances were used to cope with stigma and discrimination, and changing the dress code to hide their preferred gender identity.ConclusionsIndividual, community and healthcare system barriers hindered access and utilisation of HIV/STI prevention and care services among the trans-women sex workers. There is a need to create an enabling environment in order to enhance access to and utilisation of HIV/STI prevention and care services for trans-women sex workers through sensitisation of healthcare providers, other key population groups and the community at large on the transgender identity.

Sociocultural Barriers to Early Diagnosis of Autism Spectrum Disorder


 
 
 Objective: To qualitatively explore community, family, and health care system barriers to early diagnosis of autism spectrum disorder (ASD) in children. Study Design: A phenomenological qualitative approach was used to explore mothers' experiences of receiving ASD diagnosis for their children. Place and Duration of Study: The study was conducted at Autism Resource Centre Islamabad, from March 2018 to August 2018. Materials and Methods: In-depth qualitative interviews of eight mothers of children diagnosed with ASD, who were above 36 months of age. Results: Using thematic analysis, three major themes were identified as barriers in reaching ASD diagnosis i.e. parent's lack of knowledge and misperceptions of ASD; health care system issues like undefined pathway to care, dissatisfaction with medical or associated professionals, delays due to structural and process barriers; and family factors such as stigma around mental health and disability, family denial and financial constraints. Conclusion: Additional educational outreach to families, de-stigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to parents of at-risk children may decrease delays in ASD diagnosis among children.
 
 

Perceptions of black men who have sex with men about accessing and taking PrEP: A qualitative study

Black men who have sex with men (MSM) have a 1 in 2 lifetime risk of acquiring HIV infection; yet are underrepresented in biomedical HIV prevention behaviors. In-depth interviews were conducted with Midwestern Black MSM (n = 12) taking PrEP for more than one year. A strength of this study was that it utilized qualitative methodology, which allows the revelation of perceptions that researchers cannot predict a priori. Black MSM in this study were educated and privately insured; even so, an overarching theme that emerged was that obtaining PrEP was a “long, hard road.” Facilitators to PrEP access included having an important person, insight into stigma, wariness of sexual partners, and desire to be a part of something greater than oneself. Findings have important implications for research and clinical practice. Strategies that decrease healthcare system barriers and simplify PrEP access are urgently needed for MSM at risk for HIV acquisition.

<p>Healthcare Worker Experience and the Challenges in Screening for Intimate Partner Violence Among Women Who Use Antiretroviral Therapy and Other Health Services in Wolaita Zone, Ethiopia: A Phenomenological Study</p>

BackgroundIntimate partner violence is a crime against humanity. This study aimed to explore the experiences and challenges in screening for intimate partner violence among women who use antiretroviral therapy and other health services in Wolaita Zone in Ethiopia.MethodsA descriptive phenomenological qualitative study design was used, and 16 in-depth interviews were conducted with healthcare workers from 19 health facilities who were providing healthcare services in Wolaita Zone. We selected participants purposively until data saturation was reached. Colaizzi’s descriptive phenomenological method was used for the data analysis, and the Open Code software was used to assist with the data coding. We maintained the scientific rigour of credibility, transferability, dependability, and confirmability.ResultsAnalysis of the study data identified the following five themes: type of IPV identified by HCWs among women, provider-related barriers, healthcare system barriers, patient-level barriers, and providers’ recommendations for improvements. Issues that emerged from these findings were a gap in medico-legal report provision, absence of a separate record-keeping for IPV cases, lack of client follow-up, absence of routine assessment of violence for women who have injuries, and lack of specific coordination with an external organisation. Moreover, the absence of staff training, weak referral systems, and a shortage of necessary medical equipment challenged IPV screening.ConclusionThis study has shown that there are healthcare provider and health system challenges relating to screening clients for intimate partner violence in Wolaita Zone. Provision of separate record-keeping of intimate partner violence cases in the healthcare facilities, standardising the medico-legal reporting system, improving women’s access to education, and executing more gender-equitable policies, are needed. Moreover, the inclusion of intimate partner violence-specific policy frameworks in national legislation is necessary.

Mitigating barriers in communication with migrants, results from a survey among health personnel

Abstract Background Ensuring equity in health for migrant is a challenge for society and the health services. This survey map the challenges health personnel face in communication with immigrant patients, and how they wish to mitigate these challenges. Results can be used to inform implementation of measures for health personnel to better meet the needs of their patients. Methods In 2017, we conducted a short online survey to map the experiences and needs of health personnel in providing information to patients and relatives with immigrant backgrounds. The questionnaire consisted of six questions with answer options and opportunities to elaborate free-text answers. The survey was distributed through two migrant health networks coordinated by the National Competence Centre for Migration and Health (NAKMI), and by the Norwegian Nurses Organization to different section members. 549 people responded. Most of them nurses (41.5%) and doctors (12.4%) but also other health personnel as midwives, administrative staff, physiotherapists and psychologists. Results Nearly 50% of the respondents stated that they experienced weekly or more often communication difficulties with immigrant patients. To overcome communication barriers more than 90% say they would use interpreters when possible, use relatives as interpreters (55%) and/or a multilingual colleague (50%). To mitigate communication challenges, respondents said translated written materials (66%), simple language (43%) or use of pictures, films etc (37%) would be of help. More than 80% believe an electronic resource that gathers advice on how to customize and facilitate information and patient education, overview of translated material and good actions and project experiences will be a good help. Conclusions There is a need for increased access to knowledge and resources that can mitigate communication barriers between health personnel and migrant patients. Key messages There is a need for a comprehensive system approach to communication barriers in the Norwegian health care system. Health personnel need better access to tools that can help them provide equitable health care to migrants.

Barriers to sexual recovery in men with prostate, bladder and colorectal cancer.

Survivors of prostate, bladder, and colorectal cancer endure many sexual side-effects of treatment that negatively impact their relationships and diminish their quality of life. Multiple barriers exist in addressing men's sexual concerns in oncological care. To describe barriers of sexual recovery in men with prostate, bladder, and colorectal cancer. We searched PubMed for peer-reviewed, English-language articles published from 1999 to 2019 using the following search terms: "prostate cancer," or "bladder cancer," or "colorectal cancer," and "male," and "sexual function," or "sexual barrier" or "sexual dysfunction." Criteria for inclusion consisted of peer-reviewed articles (review, cross-sectional, longitudinal, interventional, or pilot studies) addressing sexual issues in men with a history of prostate, bladder, or colorectal cancer. Barriers to sexual recovery in men with prostate, bladder, and colorectal cancer include psychosocial barriers such as the feeling of loss, grief, depression and anxiety, the poor utilization, and excessive cost of pro-erectile aids, a diminished sense of masculinity and reluctance to seek help for sexual problems, as well as poor couple coping. Barriers in healthcare also exist, as healthcare providers often do not effectively address sexual issues due to poor communication, lack of comfort in discussing sexual issues, time constraints, and patients' hesitation to initiate discussions on sexual dysfunction. Patients with stomas and gay, bisexual, and queer men face additional challenges in their recovery of sexual intimacy. Barriers to sexual recovery are present in men during all stages of cancer and all modalities of treatment including surgery, radiation, or androgen deprivation therapy. There are multiple overlapping psychosocial and healthcare system barriers to sexual recovery after prostate, bladder, and colorectal cancer treatment. Oncological providers must be cognizant of these complex barriers so they can facilitate patients' access to resources needed for successful sexual recovery after genitourinary cancer treatment. Evidence based interventions, such as couple psychosexual counseling and peer support should be implemented via multidisciplinary care.

A Qualitative Insight into Barriers to Tuberculosis Case Detection in East Gojjam Zone, Ethiopia.

Tuberculosis (TB) remains to be the leading cause of morbidity and mortality in the developing world. Early TB case detection (TCD) and treatment of infectious cases is vital to reduce the TB burden. The objective of this study was to identify possible barriers to TCD in East Gojjam Zone, northwest Ethiopia. The study used a descriptive phenomenological research method. The study participants included 21 TB patients, six TB control officers, and 40 health workers (HWs) selected by a heterogeneous purposive sampling technique. In-depth interviews and focus group discussions were used to collect data. Interviews were audio recorded, transcribed verbatim, translated, and thematically analyzed using NVivo 12 software (developed by QSR International Qualitative Software Developer, Melbourne, Australia). The study participants identified numerous barriers to TCD which were grouped into three major themes and 14 subthemes: 1) patient-related barriers including rural residence, low income, poor health literacy, and health-seeking delay; 2) healthcare system barriers grouped into two subthemes: HWs barriers (shortage of HWs, lack of training access, and low level of knowledge and skills) and health facility barriers (health service delay, using only passive TCD strategy, poor health education provision, and lack of regular supervision and timely feedback); 3) sociocultural and environmental barriers which included stigma and discrimination, lack of health information sources, poor transportation infrastructure, and community resistance. In conclusion, the TCD activity which is one of the pillars of the TB control program has been confronted with several patient-related, environmental, and healthcare system-related barriers. Improving community health literacy, scale-up access, and improving quality of TB diagnostic services, conducting regular supportive supervision and provision of timely feedback, arranging regular refresher training and staff motivation and recruitment schemes, and engaging local health officials and political leaders to address budgetary problems for TB and transportation infrastructure challenges are imperative interventions to enhance the TCD efforts in the study area.

Diabetes-Related Healthcare Services in Nepal—A Qualitative Exploration of Healthcare Professionals’ Opinions

Healthcare professionals’ level of engagement in diabetes care and their perceptions of challenges to effective diabetes care are key indicators impacting diabetes management. This study investigated diabetes-related healthcare services provided in Nepal, and explored healthcare professionals’ opinions of the barriers to, and strategies for, effective diabetes care. In-depth face-to-face interviews were conducted with thirty healthcare professionals providing healthcare or medication-related services to patients with type 2 diabetes within Kathmandu Valley. Interviews were audio-recorded, transcribed verbatim and thematically analysed. Participants were physicians, dieticians, nurses and pharmacy staff. Diabetes care services varied between healthcare institutions, between healthcare professionals and between patients, with the overall patient-care model reported as sub-optimal. Diabetes related services were mostly limited to physician-patient consultations. Only a few hospitals or clinics provided additional diabetes education classes, and individual dietician or nurse consultations. Limited collaboration, large patient-load and workforce shortages (particularly lack of diabetes educators) were reported as major issues affecting diabetes care. Regulatory measures to address healthcare system barriers were identified as potential facilitators for effective diabetes management. Whilst the findings are specific to Nepal, there are lessons to be learnt for other healthcare settings as the fundamental barriers to optimal diabetes care appear to be similar worldwide.

Quality of Palliative and End-Of-Life Care in Hong Kong: Perspectives of Healthcare Providers.

Background: In response to population aging, there is a need for health systems to focus on care for chronic disease, specifically palliative care, while focusing on people-centered care. The objective of this study is to explore the healthcare system enablers and barriers to the provision of quality palliative and end-of-life care from the perspective of healthcare professionals. Materials and Methods: Using purposive sampling, fifteen focus group interviews and nine individual interviews involving 72 healthcare providers were conducted. Primary qualitative data were collected between May 2016 and July 2017. All recorded discussions were transcribed verbatim and analyzed. A thematic framework was developed. Results: The provision of quality palliative and end-of-life care is influenced by the interaction and integration of nine sub-themes under four identified themes: (1) political context; (2) organization setting; (3) support to patients, caregivers, and family members, and (4) healthcare workers and the public. Conclusions: Integration of palliative and end-of-life care is an important pillar of healthcare service to improve quality of life by addressing patients’ values, wishes and preference, and assist their family to handle challenges at the end stage of life. Further improvements to the service framework would be required, specifically in the political framework, multidisciplinary approach, and readiness and competence in healthcare workers and community. These were highlighted in our study as key components in service provision to ensure that patients can receive continuous and integrated care between hospitals and the community as well as dignified care at the end stage of life.

Challenges and barriers in mental healthcare systems and their impact on the family: A systematic integrative review

The aim of this systematic integrative review is to analyse the challenges and barriers found in mental healthcare systems and the impact they have on the family. Searches were made of the Web of Science, Scopus, Medline and Cochrane databases using terms relating to mental health, family care and healthcare systems. We included and critically evaluated studies published in English between 2015 and 2019 that directly or indirectly analysed public mental health policies and the consequences they have for the family. We analysed our findings following the inductive content analysis approach. A total of 32 articles that met quality indicators were identified. Very closely related structural, cultural, economic and healthcare barriers were found that contribute to the treatment gap in mental health. The family covers the care systems' deficiencies and weaknesses, and this leads to overload and a diminishing quality of life for caregivers. It is acknowledged that people with mental illness and their families should be able to participate in the development of policies and thus contribute to strengthening mental healthcare systems worldwide.

Barriers and Facilitators to Breast and Cervical Cancer Screening in Somali Immigrant Women: An Integrative Review.

Somali immigrant women access breast and cervical cancer screenings at a significantly lower rate than other women in the United States and face unique barriers and facilitators to cancer screening. A literature search was performed using CINAHL®, PubMed®, EBSCOhost, PsycINFO®, MEDLINE®, and Google ScholarTM. Articles included qualitative studies that explored the barriers and facilitators to breast and cervical cancer screening in Somali immigrant women. 10 articles were summarized using a standardized data matrix. Evidence was integrated into a synthesis of evidence and organized by theme. According to the literature reviewed, Somali immigrant women face knowledge, cultural, and healthcare system barriers to screening for breast and cervical cancer. Recommendations to increase screening included providing culturally tailored education, increasing community involvement, and improving provider education. Understanding the barriers and facilitators that are unique to Somali immigrant women can assist nurse researchers and practitioners in developing evidence-based interventions that will provide support to this underserved population.

Health Care System Barriers to Vaginal Birth after Cesarean Section: A Qualitative Study.

Background:Approximately half of mothers give birth by cesarean section in Iran and two-thirds of them are repeated cesareans. Repeated cesarean is threatening for the mothers and newborns and not compatible with fertility policies in Iran. Vaginal Birth After Cesarean (VBAC) is a reasonable strategy but its prevalence is very low due to some barriers. The aim of this study was to explore barriers to VBAC in health care system.Materials and Methods:In this qualitative study, 26 semi-structured individual interviews with maternity care providers and mothers with prior cesarean section as well as one focus group discussion with maternity care providers were conducted. Interviews and focus group discussions were tape-recorded, transcribed verbatim and analyzed with conventional content analysis developed by Graneheim and Lundman using MXQDA10 software.Results:Barriers to VBAC in health care system identified in the main category of “the climate of restriction, fear and discourage” and eight subcategories including: “defective access to specialized services,” “insufficient encouragement system,” “modeling in cesarean section,” “physician-centeredness in VBAC,” “fear of legal responsibilities,” “imposed policies,” “marginalization of midwives,” and “unsupportive birth team.”Conclusions:To remove barriers of VBAC in health care system, appropriate strategies including establishment of specialized VBAC counseling centers, performance-based incentive policies, cultural development and promotion of natural childbirth, promoting of teamwork culture, shared decision making, improvement of knowledge and skills of maternal care providers and implementation of clinical guidelines, should be considered. Future research could be focused on the effect of implementing these strategies to decrease repeat cesarean section rate.

Healthcare system barriers of breast and thyroid screening for childhood and young adulthood cancer survivors in France: A qualitative study of the DeNaCaPST programme at one year

Healthcare system barriers of breast and thyroid screening for childhood and young adulthood cancer survivors in France: A qualitative study of the DeNaCaPST programme at one year

Patient Perspectives to Inform a Health Literacy Educational Program: A Systematic Review and Thematic Synthesis of Qualitative Studies.

Patient-centred care is tailored to the needs of patients and is necessary for better health outcomes, especially for individuals with limited health literacy (LHL). However, its implementation remains challenging. The key to effectively address patient-centred care is to include perspectives of patients with LHL within the curricula of (future) healthcare providers (HCP). This systematic review aimed to explore and synthesize evidence on the needs, experiences and preferences of patients with LHL and to inform an existing educational framework. We searched three databases: PsychInfo, Medline and Cinahl, and extracted 798 articles. One-hundred and three articles met the inclusion criteria. After data extraction and thematic synthesis, key themes were identified. Patients with LHL and chronic diseases encounter multiple problems in the care process, which are often related to a lack of person-centeredness. Patient perspectives were categorized into four key themes: (1) Support system; (2) Patient self-management; (3) Capacities of HCPs; (4) Barriers in healthcare systems. “Cultural sensitivity” and “eHealth” were identified as recurring themes. A set of learning outcomes for (future) HCPs was developed based on our findings. The perspectives of patients with LHL provided valuable input for a comprehensive and person-centred educational framework that can enhance the relevance and quality of education for (future) HCPs, and contribute to better person-centred care for patients with LHL.

Making the right thing the easy thing to do: strategies to improve outcomes in gout.

The burden of gout is increasing worldwide. Although urate-lower ing drugs have been available for more than half a century, the initiation and persistence of urate-lowering therapy remain low. Health-care system, practitioner, and patient barriers contribute to the clinical inertia in gout management. Pervasive beliefs about gout as a disease of an indulgent lifestyle that should be managed primarily with dietary modification are key barriers that prevent patients from receiving effective therapy. In light of safety concerns about newer urate-lowering medications, allopurinol, an inexpensive generic medication, is likely to remain the first-line urate-lowering therapy for the foreseeable future. Ensuring that allopurinol is optimally and persistently prescribed is a priority for improved gout management. A health literacy approach that focuses on patient understanding of gout as a chronic disease that requires behaviour change to take long term urate-lowering therapy is important. This approach provides a clear rationale for long-term urate-lowering therapy that is able to dissolve the monosodium urate crystals and ultimately prevent the symptoms of gout. Patient-centred models that use the skills of nurses and pharmacists to facilitate patient understanding can lead to major improvements in gout care. Additionally, systematic quality improvement approaches within practices, while reducing inconvenience and cost to patients, should be a priority.

Palliative care as an emerging role for respiratory health professionals: Findings from a cross-sectional, exploratory Canadian survey

IntroductionRespiratory Health Professionals (RHPs) with specialty training in the management of asthma and COPD, often care for patients with advanced respiratory disease, who have less access to palliative care than patients with similar disease burden. The aims of this study were to: (i) explore the current and desired roles of RHPs in terms of palliative care and (ii) examine barriers to discussions with patients about palliative care.MethodsAn online survey addressing the aims of this study was developed and pilot tested. The survey was distributed nationally using the database of the Lung Association’s RESPTREC respiratory educator training program. Descriptive statistics were performed.ResultsA total of 123 completed surveys were returned, with respiratory therapists comprising the largest group of respondents. The majority indicated that end-of-life care was less than optimal for patients with advanced respiratory illnesses and agreed that palliative care should be a role of RHPs. Patient- and family-related barriers to having end-of-life discussions included: difficulty accepting prognosis, limitations and complications, and lack of capacity. For providers, the most important barriers were: lack of training, uncertainty about prognosis, and lack of time. The health care system barriers of concern were increasing demand for palliative care services and limited accessibility of palliative care for those with advanced respiratory diseases and difficulties in accurate prognostication for these conditions.DiscussionIncorporating a more defined role in palliative care was generally seen as a desirable evolution of the RHP role. A number of strategies to mitigate identified barriers to discussions with the patient are described. Better alignment of the services required with the needs of patients with advanced respiratory disease can be addressed in a number of ways.ConclusionsAs RHP roles continue to evolve, consideration should be given to the ways in which RHPs can contribute to improving the quality of care for patients with advanced respiratory disease. Building collaborations with RHPs, palliative care, and other existing health programs can ensure high quality of care. Creating and taking advantage of learning opportunities to build skills and comfort in using a palliative approach will benefit respiratory patients.

Barriers to epilepsy care in Central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers

BackgroundEpilepsy is a common neurological disease with substantial impact on the subject and their caretakers. This exploratory study identified barriers to care for persons living with epilepsy (PLWE) to develop a culturally acceptable nurse led self-management intervention for PLWE previously developed in the United States.MethodsThe study involving 48 participants (31 PLWE and 17 caregivers) with in depth interviews and focus groups was conducted. We obtained insights into barriers to care in PLWE and their caregivers. Using a thematic analytic procedure emphasizing the dominant themes the qualitative responses were analyzed. Median age of PLWE was 24 years (IQR 19–30), and10 (52.6%) were male. The median age of epilepsy onset was 12 years (IQR 6–18), range of 1–37 years. The median age of caregivers was 50 years (IQR 45–50.5), with a range of 18–78 years. Seventy five percent of caregivers (6/8) were females.ResultsThree major areas of perceived barriers involving individual, family or community and provider and healthcare system barriers to epilepsy care emerged. Individual factors like limited epilepsy knowledge and medication non-adherence were reported to be key barriers to epilepsy care. Caregiver burden and lack of family support as well as poor health care access were identified from the family and health care systems.ConclusionsThe main barrier to epilepsy care is limited epilepsy knowledge in PLWE and their caregivers. Improving epilepsy care awareness and knowledge within communities and appropriate health care provider service for epilepsy would help reduce epilepsy barriers and improve care.