The purpose of this phenomenological study was to describe the experiences of parents who manage the health needs of an adolescent with Autism Spectrum Disorder (ASD). Qualitative interviews were conducted with parents from 10 families of adolescents with ASD residing in Virginia. Data were analyzed using Clark Moustakas’ method of analysis of data in which the phenomenologist asks the following questions: What are the individual’s experiences, and in what context did they experience them? This study maximized credibility by using three strategies: prolonged engagement, peer debriefing, and member checking. “Parents needing help” emerged as the essence of the parents’ experiences. Four themes representing the essential challenging elements of the parents’ experiences included concern with medications, frustrations with healthcare services, recognizing secondary health issues, and the need for resources and services. Findings of the current study revealed key factors to be considered in the development and delivery of help in managing the adolescent with ASD healthcare needs. These included providing guidelines for primary care providers, increasing the healthcare provider’s awareness and understanding of ASD, and increasing the number of resources for parents of adolescents with ASD. The results of the study confirmed that managing the adolescent’s healthcare needs was frustrating and challenging and that parents had a need for help in managing these needs. Nurses can be integral in helping parents to overcome frustrations and challenges by becoming more aware of the ASD spectrum of neurobiological disorders, by creating and planning interventions for parents, by sharing information regarding resources and services, and by collaborating with others in the healthcare field to provide services for adolescents and their families. Additional research, both qualitative and quantitative is needed to understand how both parents and adolescents with ASD experience this transitional period.

Children with autism spectrum disorder (ASD) represent a growing category of children who have special health care needs. Recent Centers for Disease Control and Prevention (CDC) estimates suggest that 1 in 88 children in the United States have an ASD (CDC, 2012). Due to difficulty with communication, social skills, and restricted and/or repetitive behaviors that comprise current diagnostic criteria (APA, 2013), children with ASD require significant medical, mental health, and therapeutic supports that contribute to greater heath care utilization costs than persons without ASD (e.g., Shimabukuro, Grosse, & Rice, 2008). Therapies such as occupational, physical, and speech therapy are among recommended services provided to remediate functional or behavioral needs (Johnson & Myer, 2007). Studies investigating access to healthcare services such as diagnostic and genetic screening or primary care are frequently published in the literature; however, few studies examine access to needed therapy services. The purpose of this study was to examine population-based trends in therapy service access in children with ASD compared to children with attention deficit hyperactivity disorder (ADHD) and cerebral palsy (CP) using two waves of the National Survey for Children with Special Health Care Needs (NS-CSHCN). Additionally, this study aimed to identify predisposing, enabling, and need characteristics that predicted lack of access to therapy across the two cross-sectional points in time. Parent-reported contextual characteristics that potentially limited access to needed therapy services were compared between survey time periods (2005-06 and 2009-10). Results of this study suggest that children with ASD are significantly more likely to not receive needed therapy services than children with attention-deficit hyperactivity disorder (ADHD), but are similar in their unmet need for therapy compared to children with cerebral palsy (CP). Significant predictors of an unmet need for therapy were having a current ASD diagnosis, age, uninsured status, greater functional limitation, and having a reported behavior problem. The only access problem that differentiated children from ASD from ADHD and CP was “difficulty finding a provider accepting insurance”. Implications of these results are discussed in the context of Andersen’s Behavioral Model of Health Service Use and recommendations for future research are presented.

Telehealth has great potential for providing timely and comprehensive care to community-dwelling older adults while reducing their barriers to healthcare access. The purpose of this study is to understand how older adults with chronic diseases access healthcare services in their community and evaluate the impact of telehealth on access to care from a self-reported survey conducted in British Columbia. About a quarter of older adult participants reported barriers to healthcare access in their community. Participants frequently reported financial barriers to healthcare access regardless of telehealth use. In addition, telehealth users more frequently reported a lack of necessary healthcare services in their community and physical barriers to access to care. Although the findings did not demonstrate a significant difference in access to care between telehealth users and nonusers, telehealth was identified as a meaningful care delivery tool for older adults with barriers to healthcare access. Further efforts are needed to implement a valid tool for ongoing evaluation and optimization of telehealth and integrate telehealth into clinical and community programs to reduce physical and financial barriers to healthcare access for community-dwelling older adults with chronic illnesses. / Graduate

Les orientations en matière de lutte contre le VIH/Sida s’accordent sur la nécessité de mettre en œuvre une offre de prévention plus diversifiée pour limiter les nouvelles infections auprès des populations les plus touchées par l’épidémie. En Afrique de l’Ouest, les hommes ayant des relations sexuelles avec les hommes (HSH) sont particulièrement vulnérables à l’infection par le VIH. Dans ce contexte, la réponse des programmes VIH repose principalement sur les services de santé offerts par les associations communautaires. Cependant, peu de données sont disponibles sur les HSH séronégatifs bénéficiant d’une offre diversifiée de prévention en Afrique de l’Ouest, aussi bien sur leurs motivations à être suivi dans des services communautaires que sur leurs comportements sexuels à risque. Ce travail s’appuie sur les données recueillies dans une cohorte interventionnelle (CohMSM) offrant aux HSH séronégatifs un suivi trimestriel préventif mise en œuvre par des associations communautaires (Mali, Côte d’Ivoire, Burkina Faso, Togo). Les résultats montrent que les besoins de ces participants sont en faveur d’une offre de santé sexuelle globale. L’accès à la PrEP est également considéré par les HSH comme un besoin prioritaire au regard de leurs comportements sexuels à risque. Cette thèse a également permis de mieux identifier les HSH présentant un risque élevé d’exposition à l’infection par le VIH. Le suivi préventif offert semble aussi réduire les pratiques sexuelles à risque des HSH les plus exposés au risque d’infection. Ces résultats contribuent ainsi à mieux appréhender la mise en place d’une offre diversifiée de prévention auprès des HSH dans un cadre communautaire. / The new HIV/AIDS guidelines recommend a combined package consisting of multiple preventive strategies to limit new infections among the most affected populations. In West Africa, men who have sex with men (MSM) are especially vulnerable to HIV infection. In this context, the response of HIV programs primarily relies on healthcare services provided by community-based organizations. However, there is limited data regarding HIV-negative MSM accessing a combined preventive package in West Africa as well as on their motivations for being followed-up in community-based services and on their risky sexual behaviors. This work used the data collected from an interventional cohort (CohMSM) offering a quarterly preventive follow-up to HIV-negative MSM in community-based settings in four West African countries (Mali, Côte d'Ivoire, Burkina Faso, Togo). The results demonstrate that the needs of the participants are in favor of a comprehensive sexual health offer. Access to PrEP is also considered by MSM as a priority need in view of their high-risk sexual behaviors. This also helps to better identify MSM who are at high-risk of exposure to HIV infection. Furthermore, the quarterly preventive follow-up also appears to reduce risky sexual practices in MSM most at risk. Thus, these results contribute to a better understanding of the implementation of a combined prevention package for MSM in a community setting.

Background: The COVID-19 pandemic disrupted access to healthcare services in Canada, but little is known about the magnitude of unmet healthcare needs and characteristics associated with increased risk of unmet needs in the adult population. Objectives: First, to describe unmet healthcare needs, including COVID-19 testing access, and to evaluate the association of the social determinants of health (SDOH) and chronic conditions with unmet healthcare needs. Secondly, to evaluate the association between symptoms of depression and anxiety with unmet healthcare needs, and test if the interaction was modified by sex. Methods: The data of 23,972 adults who completed the Canadian Longitudinal Study on Aging COVID-19 Questionnaire Study exit survey (Sept.–Dec. 2020) was analyzed. Three outcomes were evaluated: 1) challenges accessing healthcare, 2) not going to a hospital or seeing a doctor when needed, 3) experiencing barriers to COVID-19 testing. For objective 1, a prospective cohort study was conducted. For objective 2, a cross-sectional study was conducted. RESULTS: Overall, 25% of adults in Canada reported challenges accessing healthcare, 8% did not go to a hospital or see a doctor when needed, and 4% experienced barriers to COVID-19 testing. Several SDOH, including sex, immigrant status, racial background, education and income, were associated with unmet needs. The odds of reporting all three outcomes declined with age. Pre-pandemic unmet needs were strongly associated with higher odds of all three outcomes, while the presence of chronic conditions was associated with higher odds of the first two outcomes. Symptoms of depression and anxiety were strongly associated with all three outcomes. Interaction with sex was found for the first outcome, with stronger associations in females. Conclusions: This thesis identified groups that experienced difficulties accessing healthcare services during the pandemic. Future research may assess consequences of unmet needs, evaluate mechanisms that cause unmet needs and determine ideal interventions. / Thesis / Master of Public Health (MPH) / The COVID-19 pandemic in Canada affected how individuals were able to access healthcare services. To understand which groups experienced a greater level of difficulties, we examined the experience of unmet healthcare needs during the first year of the pandemic using a sample of 23,972 adults that had completed the Canadian Longitudinal Study on Aging (CLSA) COVID-19 Questionnaire Study (Sept. – Dec. 2020). We found evidence that the experience of unmet healthcare needs varied by several sociodemographic characteristics, such as sex, immigrant status, racial background, education and income. Younger adults were more likely to report unmet needs. Individuals with chronic conditions and those had reported unmet healthcare needs prior to the pandemic were also more likely to report unmet needs during the pandemic. Individuals with symptoms of depression and anxiety were also more likely to report unmet healthcare needs. These results can be used to inform interventions that improve access to healthcare services for vulnerable groups.

Yes / Objectives Congenital anomaly (CA) are a leading cause of disease, death and disability for children throughout the world. Many have complex and varying healthcare needs which are not well understood. Our aim was to analyse the healthcare needs of children with CA and examine how that healthcare is delivered. Design Secondary analysis of observational data from the Born in Bradford study, a large prospective birth cohort, linked to primary care data and hospital episode statistics. Negative binomial regression with 95% CIs was performed to predict healthcare use. The authors conducted a subanalysis on referrals to specialists using paper medical records for a sample of 400 children. Setting Primary, secondary and tertiary healthcare services in a large city in the north of England. Participants All children recruited to the birth cohort between March 2007 and December 2011. A total of 706 children with CA and 10 768 without CA were included in the analyses. Primary and secondary outcome measures Healthcare use for children with and without CA aged 0 to <5 years was the primary outcome measure after adjustment for confounders. Results Primary care consultations, use of hospital services and referrals to specialists were higher for children with CA than those without. Children in economically deprived neighbourhoods were more likely to be admitted to hospital than consult primary care. Children with CA had a higher use of hospital services (β 1.48, 95% CI 1.36 to 1.59) than primary care consultations (β 0.24, 95% CI 1.18 to 0.30). Children with higher educated mothers were less likely to consult primary care and hospital services. Conclusions Hospital services are most in demand for children with CA, but also for children who were economically deprived whether they had a CA or not. The complex nature of CA in children requires multidisciplinary management and strengthened coordination between primary and secondary care. / research by a PhD candidate supported by a Bradford University studentship, in conjunction with the White Rose Consortium, and the National Institute for Health Research (NIHR), Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Yorkshire and Humber programme 'Healthy Children Healthy Families Theme', IS-CLA-0113-10020.

Background: The impact children with complex healthcare needs have on the healthcare system is significant and requires a multidisciplinary response. Congenital anomaly (CA) is a group of conditions requiring complex and variable input from primary and secondary healthcare. This thesis explores the literature on health system preparedness for children with complex healthcare needs and quantitatively describes healthcare use for a population of children with CA, an exemplar for children with complex healthcare needs. Methods: Routine health data from primary care was explored to identify children with CA and linked to secondary care data, outpatient records, and questionnaire data from a multi-ethnic prospective birth cohort over a five-year period. Rates of CA were calculated and healthcare use for children with and without CA was analysed. Results: Out of a birth cohort of 13,857 children, 860 had a CA. Using primary care data for children aged 0 to 5 years, the number of children with CA was found to be 620.6 per 10,000 live births, above the national rate of 226.5 per 10,000 live births. Healthcare use was higher for children with CA than those without CA. Demand for use of hospital services for children with CA was higher (Incident rate ratio (IRR) 4.38, 95% confidence interval (CI) 3.90 to 4.92) than demand for primary care services (IRR, 1.27, 95% CI 1.20 to 1.35). Conclusion: These results suggest that using primary care data as a source of CA case ascertainment reveals more children with CA than previously thought. These results have significant implications for commissioning healthcare services for children with complex healthcare needs.

Despite the passage of the Patient Protection and Affordable Care Act (PPACA) in 2010, the Centers for Disease Control and Prevention identified persistent disparities in health care resources as the primary causes of mortality among minority populations. An underexplored resource for affected African American populations is the church, which is not a recognized stakeholder in the implementation of current health care policy. The purpose of this phenomenological case study was to gather perspectives from African American parishioners who lacked sufficient health care insurance on the roles the church could play. Qualitative data management software was used to organize the data (transcripts of interviews) for coding. The purposeful sample of 12 church attendees came from urban, suburban, and rural African American churches. The Andersen behavioral model and Hochbaum's health belief model were used as the conceptual framework for thematic analysis of health care disparities. Kingdon's multiple-stream framework provided theoretical grounds for policy development and revision. Key findings revealed several interrelated health care disparity themes: the significance of insurance coverages, premium costs, financial barriers, family and personal issues, empowerment strategies, religious beliefs, and roles the church could play in promoting quality community health. The study has implications for positive social change: The results include guidance for the development of a bipartisan health care policy that includes the church as a stakeholder. A- partnership between the church and the legislators of health care reform could be a catalyst for improved metrics, trust, accountability, transparency, and opportunities to create tailored health care interventions and thus help alleviate societal health crises.

This study addresses the healthcare needs of employees and their families living in the Kruger National Park (KNP). A quantitative, explorative, descriptive research design was used to interview respondents who comprised of 75 male and female employees with children of various ages. The findings revealed that physical, psychological, environmental, socio-cultural, and behavioural needs of the employees and their families living in the KNP is probably unattainable as healthcare services are poorly distributed throughout the KNP, being mostly concentrated in the main camp of Skukuza. A number of respondents indicated that they required consultations about psychological and socio-cultural stresses in their lives. These services are not available in the KNP. / Health Studies / M.A. (Health Studies)

This study addresses the healthcare needs of employees and their families living in the Kruger National Park (KNP). A quantitative, explorative, descriptive research design was used to interview respondents who comprised of 75 male and female employees with children of various ages. The findings revealed that physical, psychological, environmental, socio-cultural, and behavioural needs of the employees and their families living in the KNP is probably unattainable as healthcare services are poorly distributed throughout the KNP, being mostly concentrated in the main camp of Skukuza. A number of respondents indicated that they required consultations about psychological and socio-cultural stresses in their lives. These services are not available in the KNP. / Health Studies / M.A. (Health Studies)