Health Care Experiences Of People Research Articles

Understanding the contribution of intellectual disability nurses. Paper 2 of 4 - Survey.

The objective was to identify ID nursing interventions and their impact on the health and healthcare of people with IDs. Data was collected using an online survey questionnaire from a voluntary response and snowball sample of 230 participants. Thematic, descriptive statistical, and inferential statistical analyses were undertaken. We identified 878 interventions that could be undertaken by ID nurses from 7 countries. We categorised the interventions into five themes: effectuating nursing procedures, enhancing impact of ID services, enhancing impact of mainstream services, enhancing quality of life, and enhancing ID nursing practice. Findings demonstrate that ID nurses play important roles in improving the health and healthcare experiences of people with IDs.

The health care experiences of people with head and neck cancer: A scoping review.

Understanding health care experience in head and neck cancer (HNC) is becoming increasingly important due to changes in the disease profile, survivorship, and a greater appreciation of patient health care experience as an important outcome measure. People with HNC encounter many different types of health care professionals and health care touchpoints. Through systematic database searching, this scoping review of qualitative English-language studies describes the self-reported care experiences of those with HNC across the health care continuum, and describes the current state of the literature. Overall, the 95 studies identified were heterogeneous and investigated a broad range of topics. Trends across studies showed research centered on hospital-based care, conducted in developed countries, with more studies on feeding than other aspects of care. Generic qualitative research frameworks, with individual interviews, were the preferred method of data collection. Despite identifying many studies, there are significant gaps in our understanding of the HNC patient experience.

Acute service and disability service providers experiences of joint working to improve health care experiences of people with an intellectual disability compared to non-joint working: A mixed-method systematic review.

Persons with intellectual disabilities require frequent access to acute services. Many also access disability services within the community. Reports and enquiries have highlighted the sub-optimal healthcare provided to this group when accessing healthcare in acute services. Joint working between acute and disability services has been identified as a measure to improve healthcare for this group. A mixed method systematic review was undertaken to explore current evidence of joint working between both service providers. Twelve publications were included, and the data were analysed using thematic analysis. Confusion around responsibility and limited training in acute services prevented joint working from occurring. Information-sharing is pivotal in promoting joint-working, but measures which facilitated it were not always used. Albeit acute services demonstrated a strong commitment to deliver quality care to those with intellectual disabilities. Much of the available research captures the experiences of staff in acute services. There is a paucity of research available exploring experiences of disability service providers.

Experiences of diagnosis and treatment for upper limb Complex Regional Pain Syndrome: a qualitative analysis.

Complex Regional Pain Syndrome (CRPS) most frequently affects the upper limb, with high associated disability. Delays to diagnosis and appropriate treatment can adversely impact prognosis and quality of life, but little is known about the healthcare experiences of people with CRPS. This study aimed to explore lived experiences of diagnosis and treatment for people with upper limb CRPS. Participants were recruited through online support groups and multiple public and private healthcare settings in the Greater Wellington Region, New Zealand. Semi-structured interviews were conducted with participants who had experienced upper limb CRPS for more than three months and less than three years. Interviews were transcribed verbatim and analysed using reflexive thematic analysis. Thirteen participants (11 female, 2 male) aged between 43 and 68 years were interviewed. Duration of CRPS ranged from 7 months to 2.5 years. Five themes were identified. Participants initially engaged in healthcare out of a desire to return to being the person they were before having CRPS. Three interacting experiences epitomised the overall healthcare experience: (1) not knowing what is going on, (2) not being taken seriously, and (3) healthcare as adding another layer of load. Meanwhile, participants used multiple approaches in an attempt to not let CRPS stop them from continuing to live their lives. Participants in this study felt that credible information, validation, and simplification from healthcare providers and systems would support their process of navigating towards a meaningful life and self-concept in the presence of CRPS.

Health care experiences of people with Parkinson’s disease in Australia

BackgroundLittle is known about the health care experiences of people with Parkinson’s disease (PwP) living in Australia. Exploring health care experiences can provide insight into service gaps which can then help direct quality improvement, such as improving communication between patients and health professionals.MethodsThis study aimed to examine the health care experiences of a sample of PwP living in Australia using the Patient-Centered Questionnaire for Parkinson’s disease (PCQ-PD). Participants were recruited from four sources located in Victoria, Australia: (1) a metropolitan Movement Disorders Program (Group 1); (2) metropolitan based movement disorder neurologists working as sole practitioners and not within multidisciplinary teams (Group 2); (3) a regional based multidisciplinary PD program (Group 3); and (4) PD support groups in regional and rural Victorian towns without PD specialist programs (Group 4). Scores derived from the PCQ-PD included the overall patient-centered score (OPS), six sub-scale experience scores (SES) and the quality improvement scores (QIS). Health care experiences were compared between Groups 1, 2, 3 and 4 and multivariate linear regression models were used to explore factors contributing to patient-centeredness.Results227 participants reported a mean (SD) OPS score of 1.8 (SD 0.5) with no significant differences between groups. The rating for the Tailored Information subscale was low, (mean 1.3, SD 0.5), with Group 2 having a significantly lower score, 1.1 (SD 0.5), compared to Group 1, 1.4 (SD 0.5) (p = 0.048). Experiences of Continuity of Care and Collaboration of Professionals were rated significantly lower by Group 2, 1.3 (SD 1.0) compared to Groups 1, 1.8 (SD 0.9) (p = 0.018) and 3, 2.1 (SD 0.8) (p = 0.002). Care aspects related to the Tailored Information subscale were prioritised for improvement by all groups. The main predictors of positive health care experiences were disease duration (coeff 0.02; 95% CI 0.00, 0.04) and living with another person (coeff 0.27: 95% CI 0.03, 0.51).ConclusionThis sample of participants with PD had poor experiences of several aspects of care known to be important in the provision of quality PD care. They prioritised the improvement of personalised health care information and better continuity of care and collaboration between health professionals.

Patient Perspectives of Health System Barriers to Accessing Care for Hidradenitis Suppurativa

Patient-perceived barriers to hidradenitis suppurativa (HS) care are poorly understood. Understanding health care barriers is a critical first step toward improving care for this population. To characterize the health care experiences of people living with HS, including perceived barriers and facilitators to health care access, and to elucidate potential associations among these barriers and facilitators, health care access, and disease activity. In this qualitative study, an inductive thematic analysis was conducted on 45 in-depth, 60- to 90-minute semistructured interviews of 45 people with HS from diverse sociodemographic backgrounds that took place between March and April 2020. Individuals were eligible if they could speak English, were 18 years or older, and were diagnosed with HS. A diagnosis of HS was confirmed through physician diagnosis or through self-reported, affirmative response to the validated screening question, "Do you experience boils in your armpits or groin that recur at least every six months?" Interviews were audio recorded and transcribed verbatim. A modified grounded theory approach was used to develop the codebook, which investigators used for inductive thematic analysis. Among the 45 participants included, the median (IQR) age was 37 (16) years, 33 (73%) were female, and 22 (49%) were White. There were 6 interrelated themes associated with participant-perceived barriers to accessing HS care: (1) bidirectional associations of disease activity and employment, (2) association of employment with health care coverage, (3) association of health care coverage with costs and perceived access to care, (4) association of costs with access to patient-centered care, (5) health care professional attitudes and knowledge influence patient-centered care and perceived access to care and disease activity, and (6) health system characteristics influence patient-centered care and associated costs, perceived access to care, and disease activity. This qualitative study highlights themes that generate a conceptual model for understanding barriers that may act synergistically to limit health care access and influence disease activity. The disease activity of HS may be reduced when cycle elements are optimized. This study also highlights areas for future investigations and potential systems-level changes to improve access to patient-centered HS care.

Healthcare experiences of people with advanced colorectal cancer: A qualitative study.

Qualitative research examining healthcare experiences and needs of people with advanced (metastatic or recurrent) colorectal cancer CRC-A is limited. This study aimed to fill this gap in CRC-A survivors treated with surgical or palliative chemotherapy, through a qualitative study. Australian adults treated for CRC-A were recruited 0.5-2 years post-surgery or post-diagnosis of CRC-A (for palliative chemotherapy groups). Semi-structured telephone interviews, analysed via framework analysis, explored healthcare experiences. Demographic, clinical, and quality of life data characterised the sample and informed framework analyses. Data was compared against the Institute of Medicine's framework for quality healthcare. Interviews from 38 participants (22 female) of median age 59 years (range 27-84) revealed six overarching themes relating to the safety, effectiveness, timeliness, patient-centredness, efficiency, and equity of CRC-A care: 1) Early experiences influence later perceptions; 2) Trusting the system, trusting the professionals; 3) The benefits of multidisciplinary care co-ordination; 4) Feeling lost in follow-up; 5) Whose role is it anyway? Gaps in responsibility for survivorship care; and 6) Useful or useless? Perceptions of psychosocial support. Healthcare systems for CRC-A can be improved through delivery of repeated information, upskilling general practitioners and/or implementing written survivorship care plans or survivorship clinics, to ensure quality healthcare.

Unmet needs, limited access: A qualitative study of postpartum health care experiences of people with disabilities.

To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives. A qualitative study with semi-structured interviews. Between July 2019 and February 2020, in-person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth. Thematic analysis was used identify common themes. We identified three overall themes concerning participants' postpartum care experiences and the different types of formal services received in and out of hospital: (1) lack of adequate care, (2) lack of provider awareness of disability and disability accommodations, and (3) fear of judgement, discrimination, and intrusive surveillance. The identified themes were applicable across disability groups. However, most comments on disability accommodations came from participants with physical or sensory disabilities, while participants with intellectual/developmental disabilities most commonly reported concerns about lack of adequate care and fear of judgement, discrimination, and intrusive surveillance. Findings indicate that postpartum care often fails people with disabilities. This could contribute to negative health consequences for them and their newborns. Birthing people with disabilities need multidisciplinary, proactive, and strengths-based postpartum care to mitigate risk for health complications. Further, disability-related training and guidelines for health and social service providers is required. Consolidated criteria for reporting qualitative research (COREQ). Our research team included two peer researchers with physical disabilities who served as co-interviewers and participated in data analysis, contributing their lived experience of disability and interactions with the health care system. All stages of the study were also informed by feedback from the study's Advisory Committee, which comprised women with disabilities (many of whom are parents), disability organization staff, clinicians, and policy representatives.

Health Experiences of Sexual and Gender Minority People Living With Dementia and Their Care Partners: Protocol for a Scoping Review.

People living with dementia and their care partners who identify as a sexual and gender minority (SGM) often experience specific health inequities and disparities due to discrimination related to age, cognitive impairment, and being SGM. The purpose of this scoping review is to identify, explore, and synthesize the state of the science regarding the health and health care experiences of SGM people living with dementia and their care partners. This review also aims to identify gaps in research and set forth key recommendations to improve the health and health care experiences of SGM people living with dementia and their care partners by advancing health equity through research, policy, and practice. The protocol follows the guidelines set forth by Joanna Briggs Institute protocol for scoping reviews. Steps of this framework that will be followed include (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results; and (6) consultation. This scoping review will explore several electronic databases, including MEDLINE, Embase, CINAHL, AgeLine, PsychINFO, and Scopus. Health librarians will conduct the initial search for articles that are in English, include people living with dementia who identify as SGM, SGM people living with dementia and their care partners, or SGM care partners caring for people with dementia. Studies must be peer reviewed and focus on the phenomenon of interest, which is the health and health care experiences of participants. Covidence will be used to review abstracts and full-text articles and to screen articles. After the search has been completed, 2 independent reviewers will screen article titles and abstracts to identify eligibility. Discrepancies will be discussed and decided upon by the 2 reviewers. Relevant studies will be collected, and data will be extracted and charted to summarize key findings. Key findings will be presented to a community stakeholder group of SGM care partners and people living with dementia, and a listening session will be convened. This scoping review will identify the state of the science of health and health care experiences of people living with dementia and their care partners who identify as SGM. We will identify gaps and provide recommendations to inform future research, policy, and practice to improve health and health care experiences of SGM people living with dementia and their care partners. Little is known about people living with dementia and their care partners who identify as SGM. This scoping review will be one of the first to identify the health and health care experiences of people living with dementia and their care partners who identify as SGM. The results of this review will be used to guide future interventions and to inform future policy and practice to improve health care and reduce health disparities in this population. PRR1-10.2196/44918.

Achieving Calm: A Study on the Health Care Experiences of People With Lived Experience of Homelessness in Central Texas.

The experiences of care of people with lived experience of homelessness are rarely embraced to change care delivery. We conducted qualitative group and one-on-one interviews utilizing experience group methodology with 27 people with lived experience of homelessness currently housed in one permanent housing community in central Texas. We analyzed data using an inductive thematic approach to identify shared obstacles and barriers to receiving health care. We then analyzed findings with the capability, comfort, and calm value framework to identify health outcomes that matter most to study participants. Poor access to care, discontinuities in care, distrust in providers, and confusing terminology were identified as the biggest barriers to health. The overwhelming majority of experiences reflected poor health outcomes of calm, the outcome of a health care experience that adds ease to one's life rather than logistical and administrative chaos. We propose three practical approaches to achieve calm for this population as follows: systems-level embracement of compassionate care, integration of relationship-based care navigation into all levels of care, and building efficient transportation into care design. We conclude that designing health care that works in the lives of people with lived experience of homelessness is critical to address the gaps in care that fuel the health disparity these individuals face compared to people without this lived experience.

The healthcare experiences of people with mild stroke in Australia

ABSTRACT There is minimal understanding of how people with mild stroke experience health services. With recent acknowledgement of the difficulties this population faces, it is imperative that their views are sought on services required to meet their needs. This study aimed to answer the question: ‘How do people with mild stroke perceive their experience of stroke-related healthcare services?’. Qualitative investigation using an interpretative phenomenological analysis. Five participants were interviewed at 1-, 3-, and 6- months post discharge. Three themes were identified that reflected the ‘essence’ of healthcare service experiences: 1) The difficult diagnosis, 2) Standard care: good but not good enough, and 3) A journey better not done alone. It was clear that people with mild stroke and health professionals experienced difficulty linking symptoms to stroke. Following hospital discharge, issues relating to service coordination, information provision, and secondary prevention were identified. A formal support person appeared to increase participants’ feelings of support.

Translation into Arabic and validation of the Patient Assessment of Care for Chronic Conditions questionnaire for diabetes.

The Patient Assessment of Care for Chronic Conditions (PACIC-5As) is a questionnaire developed in English and designed to evaluate the health care experiences of people living with chronic conditions such as diabetes. This study aimed to translate, culturally adapt and validate the PACIC-5As instrument for the Arab context in a sample of Saudi Arabian people with diabetes. The PACIC-5As was translated into Arabic using a forward and backward translation process. The Arabic version was then validated with a sample of 557 Saudi Arabians with diabetes who were recruited from tertiary level diabetes centres in Riyadh between January and March 2018. In order to evaluate the psychometric properties of the Arabic version, Cronbach alphas and item correlations were determined and exploratory factor analysis was performed. The translated PACIC-5As had good psychometric quality. Cronbach alpha was > 0.9 and the inter-item correlation ranged between 0.36 and 0.56. Exploratory factor analysis showed a single-factor structure. An Arabic version of the PACIC-5As questionnaire is now available to assess the experience of patients with diabetes. The results of this study can be used to improve the quality of the delivery of health care in Arabic-speaking countries.

A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance.

Extensive research documents the health inequalities LGBTI people experience, however far less is known for people with intersex variation. This paper presents a review of intersex health and healthcare inequalities by evaluating research published from 2012 to 2019. In total 9181 citations were identified with 74 records screened of which 16 were included. A synthesis of results spans nine quantitative, five qualitative and two narrative reviews. Literature was searched in Medline, Web of Science, Cochrane, PsycInfo and CINAHL. People with intersex variance experience a higher incidence of anxiety, depression and psychological distress compared to the general population linked to stigma and discrimination. Progressive healthcare treatment, including support to question normative binaries of sex and gender, aids understand of somatic intersex variance and non-binary gender identity, especially when invasive treatment options are avoided or delayed until individuals are able to self-identify or provide consent to treatment. Findings support rethinking sex and gender to reflect greater diversity within a more nuanced sex-gender spectrum, although gaps in research remain around the general health profile and the healthcare experiences of people with intersex variance. More large-scale research is needed, co-produced with peers who have lived experience of intersex variation to ensure policy, education and healthcare advances with greater inclusivity and ethical accountability.

Health Disparities Among Sexual and Gender Minorities with Autism Spectrum Disorder.

We explored the health and health care experiences of people with autism spectrum disorder (ASD) who identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ+) using data from a national, internet-based survey of adults with disabilities supplemented by focused interviews. LGBTQ+ respondents had significantly higher rates of mental illness, poor physical health days per month, and smoking compared to straight, cisgender respondents with ASD. LGBTQ+ respondents also reported much higher rates of unmet health care need, inadequate insurance provider networks, and rates of being refused services by a medical provider. Examining the intersection of LGBTQ+ identity and ASD reveals compounded health disparities that insurers and medical providers are not adequately addressing, particularly as individuals transition to the adult medical system.

What do the healthcare experiences of people with long-term conditions tell us about person-centred care? A systematic review.

Introduction: Growing numbers of people now live with long-term conditions. For each person, the challenges are multiple and unique to that individual. In recognition of this, health policy places greater emphasis on the delivery of person-centred care (PCC). However, patients report declining levels of such care. One reason for this may be a mismatch between patient and professional/policy understanding of PCC. Aim: To understand PCC from the perspectives of people with long-term conditions. Methods: A systematic review of qualitative literature was conducted. Databases searched included ASSIA, BNI, CINAHL, the Cochrane Library, Embase, Medline, PsycINFO, PubMed, Scopus, Web of Science, and grey literature databases. Two reviewers independently screened and selected the studies, assessed their quality and extracted data. Fifty-four records were analysed through meta-ethnography. Results: Four themes emerged: the healthcare system as a battlefield, the healthcare system as a maze, patients’ accounts of personhood and the importance of patient enablement. A person-centred healthcare system is described by this review as one that values personhood and enables patients to build knowledge with their clinician in order to manage their illness in a safe, caring and accessible environment. Conclusion: PCC does not depend on the efforts of the clinician alone, but results from a collaboration with the patient and needs to be enabled by the wider organisational and educational systems. Efforts directed at the implementation of PCC might be bound to fail if the healthcare policy agenda does not address the role of the patient’s personhood in clinical practice and its integration in educational settings.

Reproductive Health Care Experiences of People with Physical Disabilities in Vietnam

This qualitative research explored the reproductive health care experiences of people with physical disabilities in Vietnam. Data from 20 participants (10 males and 10 females) was collected from in-depth interviews with the use of drawing and photo elicitation methods. The findings revealed that people with physical disabilities in Vietnam experienced difficulties with their reproductive health care that included: physically inaccessible hospitals; negative attitudes from health care providers; discouraging experiences with reproductive healthcare including assistance with fertility control; and limitations with public health insurance. Almost all the participants only saw a doctor if they became ill, but often bought over-the-counter medication from pharmacies. Some participants chose private rather than public hospitals where environments were inaccessibility, and health care providers were perceived as insensitive. In terms of contraception, study participants mostly used condoms, although some did not use any contraceptive methods resulting in unplanned pregnancies or abortion. People with disabilities in Vietnam have access to public health insurance but its limitations can affect the experiences of people with physical disabilities attempting to access reproductive health care. In Vietnam, people with physical disabilities work hard to overcome discrimination to achieve full and satisfying lives.

That Look That Makes You Not Really Want to be There: How Neoliberalism and the War on Drugs Compromise Nursing Care of People Who Use Substances

Abstract Research conducted in 2016 explored the health care experiences of people who use illicit opioids in small Ontario urban and rural communities. Perspectives of participants who used opioids and of nurse participants were interpreted using Friere’s critical social theory framework to explore sociopolitical, economic and ideological influences. Findings describe pervasive experiences of stigma, discrimination and inappropriate care. Exploration of why such negative experiences with nursing care might be so pervasive led to a consideration of the context of health care systems and in particular of the influences of neoliberalism and the impact of the global War on Drugs. Mitigation strategies to support contextualized nursing practice are outlined. Nurses are called upon to actively resist the pressures of these political forces by advocating for policy change including decriminalization.

Oral health care experiences of people living with HIV in Kwazulu-Natal and Western Cape, South Africa

Purpose – The purpose of this paper is to ascertain the oral health experiences of people living with HIV/AIDS in the provinces of Kwazulu-Natal (KZN) and Western Cape (WC) in South Africa. Many studies have reported that people living with HIV have unmet needs for dental care and this study considered the various factors that affect the accessibility and utilisation of dental services as these factors are even more pertinent for the people living with HIV who have increased need for dental care. Design/methodology/approach – The participants were selected among HIV-positive people attending selected Community Health Centre and regional hospital HIV clinics in KZN and WC provinces. The sample consisted of people living with HIV that were 18 years or older and who had given written, informed consent. The sample (n=435) comprised mainly of black females in the age group 20-29 years. In total, 347 participants (79.8 per cent) had an oral health problem of which 83 per cent (n=288) received care. Findings – Of those that received care, 56.6 per cent (n=163) of the participants stated that the staff were aware of their HIV status. Almost a third of the participants who received care reported a negative experience at the clinic. If the participant lived in a metropolitan area, the participant was 3.647 times more likely to receive care than if the participant lived in a non-metropolitan area (p < 0.01) If the participant earned R5,000 or less, the participant was 0.106 times less likely to receive care (p=0.048). If the participant lived 1-5 km from the clinic, the participant was 3.371 times more likely to receive care (p=0.015). Research limitations/implications – The results are specific to KZN and WC and cannot be extrapolated with caution to the rest of South Africa. However, to the best of the author’s knowledge, there is no other study that has compared differences in the use of oral health care services by people with HIV in South Africa and these results serve as an indication of some the important issues in this regard. Additionally, this study did not have a control group of HIV-negative people which would have enabled one to determine whether certain barriers were unique to people living with HIV. Practical implications – The study highlighted the barriers to care existing within the current public health system relative to the provision of oral health services for people living with HIV in KZN and WC. It was anticipated that by ascertaining the nature and extent of unmet needs and barriers to dental care for people living with HIV, measures can be put in place to remove or at least reduce the barriers to care and improve the quality of life for people living with HIV/AIDS in South African communities. Social implications – The high prevalence of oral health problems in people living with HIV makes it imperative for the DOH to make every attempt to remove barriers to oral health care and thereby secure equitable, affordable and accessible oral health care which is acceptable for people living with HIV and accountable to the greater society. Originality/value – This study emphasises the importance of embracing people that are being discriminated and marginalised by society such as people living with HIV to ensure that they feel a franchised member of society who can take the initiative to be in control of their own health and, with the necessary aid from public resources and societal support, join forces to reduce the public health burden and its impact on the socio-economic milieu.

Stigma and disclosure as barriers to regular dental care for people living with HIV/AIDS in Kwazulu-Natal and Western Cape, South Africa

Purpose – The purpose of this paper is to determine the oral health care experiences of people living with HIV in Kwazulu-Natal (KZN) and the Western Cape (WC) and also to identify the role of stigma and discrimination in the oral health care experiences for people living with HIV in KZN and the WC. Design/methodology/approach – This study was a survey among HIV-positive people attending selected Community Health Centres and regional hospitals, HIV clinics in KZN and WC provinces in South Africa. The sample consisted of people living with HIV that were 18 years or older and who had given written, informed consent. A cross-sectional study structure has been employed using a standardized format using a semi-structured interview and an administered questionnaire to collect data. The study classified participants as living in metropolitan or non-metropolitan areas. Findings – Apprehension of loss of confidentiality, stigma and discrimination were the barriers that deterred participants from seeking care. Respondents stated that they feared what the dentist and staff would think of them being HIV positive and feared being discriminated against by the dentist and staff. In some instances there appears to be a difference between policy and practice regarding the oral health care needs of and services rendered to people living with HIV in public health facilities as there are still patients who do not obtain care and for whom the attitudes of the health care provider constitutes the major barrier to accessing that care. Research limitations/implications – The results are specific to KZN and WC and have to be extrapolated with caution to the rest of South Africa. Additionally, this study did not have a control group of HIV-negative people which would have enabled one to determine whether certain barriers were unique to people living with HIV. Practical implications – To make recommendations with respect to addressing the issue of stigma and discrimination in the oral health care experiences for people living with HIV in KZN and the WC as there is a definite need for the government to address the resource needs of rural areas and less developed areas of South Africa. Health care is a much-needed resource in these high prevalence areas and governments must ensure that all their HIV/AIDS projects and policies should have a rural component built into them. Social implications – This study emphasizes the importance of embracing people that are being discriminated and marginalized by society such as people living with HIV to ensure that they feel a franchised member of society who can take the initiative to be in control of their own health and, with the necessary aid from public resources and societal support, join forces to reduce the public health burden and its impact on the socio-economic milieu. Originality/value – To the best of the author's knowledge, there is no other study that has compared differences in the use of oral health care services by people with HIV in South Africa and these results serve as an indication of some the important issues in this regard.

Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies.

Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population. We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. In total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change. The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers.