Background: There are many individuals living with chronic illness and therefore follow one or more prescribed drug therapies. It is shown that over 50 percent of these are not adherent to their prescriptions and that low adherence is a growing problem across the world. Earlier research indicates that low adherence leads to decreased health and reduced quality of life. Aim: The aim was to find factors affecting adherence among individuals with chronic illness. Method: A literature study based on empirical qualitative research. The articles were analysed in accordance with Friberg's five step model. Results: Four categories emerged from the analysis of the articles; personal factors, social factors, health care factors and therapy related factors. Individuals' adherences depend on different internal and external factors. Individuals' own ability to follow routines were the most appearing factor for high adherence. Lack of trust in health professionals was the most appearing factor because of low adherence. Other appearing and affecting factors were social support, trust in healthcare and severe side effects. Conclusion: Adherence is a common and complex issue. There are many facilitators and barriers affecting adherence. Increased awareness of different factors can help health professionals to promote high adherence among individuals with chronic illness. / Många personer i världen lever med en eller flera kroniska sjukdomar och behandlas därför med läkemedel. Definitionen av adherence innebär i vilken utsträckning en person är följsam till sin läkemedelsbehandling. Tidigare forskning påvisar att endast 50 procent är följsamma till förskrivna ordinationer. Låg följsamhet är ett växande problem inom Sverige, men även globalt. I resultatet påvisades att en persons motivation, kunskap och förmåga att kunna ta eget ansvar över sin behandling var viktiga faktorer för långvarig och hög följsamhet. Ett socialt stöd från familj och närstående var betydande för hög följsamhet. Religiösa traditioner och stigmatisering i samhället visade sig ofta ha en negativ påverkan på följsamhet. Vårdrelaterade faktorer som påverkade följsamhet var exempelvis information, kommunikation, förtroende för vårdpersonal och behandling samt vårdtillgänglighet. Läkemedelsrelaterade biverkningar var ett bekymmer för upprätthållandet av följsamhet. I analysen som gjordes enligt Fribergs femstegsmodell framkom att faktorer som påverkar följsamhet inte skiljer sig märkbart över världen. Ökad kunskap hos personer och vårdpersonal om hur följsamhet till läkemedelsbehandling påverkas av olika faktorer kan främja följsamhet. Hög följsamhet bidrar till förbättrad hälsa och ökad livskvalitet hos personer med kronisk sjukdom. Det leder även till färre sjukdomsrelaterade komplikationer och färre vårdtillfällen på sjukhus. I resultatdiskussionen framkom att 'förmåga till följsamhet' och 'tillit till vård och behandling' visade sig vara betydelsefulla faktorer som påverkade följsamhet.

In sub-Saharan Africa, women are disproportionately affected by HIV. Sustained adherence to lifelong antiretroviral therapy (ART) is needed to ensure their own health and prevent transmission of HIV to their partners and their children. However, non-adherence to ART remains a substantial challenge with many associated risk factors. Travel is often reported in the qualitative literature as a barrier to ART adherence among women living with HIV, but few quantitative studies have explored this association. This research aimed to describe travel in the past year among mothers living with HIV in the Long-term Adherence and Care Engagement (LACE) study, to explore factors associated with travel, and to investigate the associations between travel and i) self-reported adherence, and ii) HIV viral load. Part A of this dissertation is the study protocol that introduces the need for this research and presents how the research will be carried out. Part B is a narrative literature review. The review summarises and synthesises existing research relating to HIV treatment and travel in sub-Saharan Africa, giving context to the dissertation. Part C is the journal “ready” manuscript. This section presents an analysis of data from the LACE study, a cross-sectional survey of women living with HIV approximately four years after they had started ART during pregnancy in Gugulethu, Cape Town. At the LACE study visit, data on short-term travel patterns (stayed away from home for 3 or more nights) in the past year and self-reported adherence in the past 30 days (using a validated three-item scale) were collected through structured questionnaires, and a blood specimen was tested for HIV viral load. Poisson regression models with robust standard errors were used to explore factors associated with travel (any versus none), self-reported adherence (100% versus <100%), and viral suppression (≤50 copies/mL). Results were reported as crude risk ratios (RR) and adjusted risk ratios (aRR) with 95% confidence intervals (CI). The results showed that among 353 women enrolled in the LACE study (mean age 32.6 years, 48% employed, 38% married/cohabiting, median 44 months postpartum) 23% (n=81) reported travelling in the past year. Of the women who travelled, most went to the Eastern Cape (90%) and travelled 1-2 times during the year (93%). Women who travelled were more likely to be married/cohabiting than women who had not travelled (aRR = 1.45; 95% Cl: 0.97 - 2.16). Only 9% of women who travelled (7 of 81) reported difficulty with ART adherence due to travel. Overall, 59% of women reported 100% adherence in the past 30 days: 52% of women who had travelled in the past year versus 61% of those who had not travelled (aRR = 0.83; 95% Cl: 0.66-1.04). Only 56% of the cohort were virally suppressed: 60% and 55% of those who had and had not travelled in the past year, respectively (aRR = 1.10; 95% Cl: 0.89-1.36). Travel in the past year was not significantly associated with self-reported adherence or viral suppression in crude or adjusted analyses. These results highlight that poor adherence and viremia were very common in this cohort of women, four years after starting ART in pregnancy. Almost a quarter of women reported travel in the past year but only a v few reported difficulties with adherence related to travel and we found no association between travel in the past year, self-reported adherence in the past 30 days or viremia. Further research is needed to understand adherence patterns during periods of travel and interventions are clearly needed to support women's long-term adherence to ART.

Objectives: The aim of this study was to explore the experiences and perceptions of counsellors and patients towards a new counselling model for HIV-positive pregnant women on Option B+ at an antenatal clinic in South Africa and to describe the cohort of HIV-positive pregnant women who experienced the new counselling model. Methods: A mixed methods study design was employed. The quantitative data collection involved using retrospective cohort quantitative data of women that were initiated on Option B+ during the period of 1 October 2013 to 30 June 2014. The variables of interest included: age, gravidity, antiretroviral therapy initiation date, viral load result and number of counselling sessions completed. These were obtained from patient folders and from the Department of Health patient electronic health record. The data was analysed using STATA 12. The qualitative data involved semi-structured interviews of patients and counsellors who had experienced the counselling model. Results: The number of women who completed a total of 1, 2, 3 or 4 counselling sessions was 25%, 26%, 48% and 1% respectively. The percentage of women that were retained in care for more than 8 weeks postnatal was 53%. Of the women with VL results, 92% were virally suppressed. The Fisher's exact test showed a P-value of 0.05 at a level of significance of P ≤ 0.05. Therefore there is sufficient evidence to show that there is a positive association between the number of counselling sessions completed and number of postnatal days in care. The study also found that from the counselling, the women gained social support, knowledge about: antiretroviral therapy, HIV, drug side effects and infant feeding. Conclusion: The poor uptake of the counselling intervention includes poor communication, service delivery challenges and social factors. The main motivation for initiating ART and maintaining adherence to treatment was to protect the baby and as a result, some women maintained adherence despite not completing the counselling. Women valued the education that they received during the counselling sessions and this influenced their adherence. Psychosocial support from the counsellors and peers was found to be vital to the women and this highlighted the need to incorporate a support group for the pregnant women, as part of the intervention. The findings also suggest that when offering counselling interventions to pregnant women, a balance between psychosocial support, practical support and patient education needs to be struck. Finally, education of the community on the importance of counselling is important in order to improve the uptake of the counselling because interventions aimed at mothers do not always take into account the influence of the social environment on the uptake of the intervention.

Introduction: Use of highly effective antiretroviral drugs to eliminate new paediatric HIV infections is the keystone of all prevention of mother-to-child transmission (PMTCT) programmes. Time on antiretroviral treatment (ART) before delivery reduces maternal viral load and decreases the risk of transmission in utero, during labour and whilst breastfeeding. Currently, many PMTCT programmes across Africa initiate HIV-infected pregnant women on lifelong antiretroviral therapy (ART) on the first day of antenatal care ("same-day" initiation). However concerns have been raised regarding patient readiness and whether same-day initiation in pregnancy may contribute to subsequent ART non-adherence. Methods: As part of a larger study of ART in pregnancy, consecutive ART-eligible pregnant women making their first antenatal care (ANC) visit at a primary care facility in Cape Town, South Africa were enrolled into a prospective cohort between March 2013 and June 2014. Before July 2013, eligibility was based on CD4 cell count ≤350 cells/μL ("Option A"), with a 1-2 week delay from the first ANC visit to ART initiation; thereafter all women were eligible regardless of CD4 cell count ("Option B+") and typically offered ART on the same day as first ANC visit. All women received standardized counselling before starting a fixed-dose regimen. Study interviews were conducted separately from the ART service through one week postpartum with self-reported adherence from 30- day recall. Results: Among 625 consecutive ART-eligible women (median age, 28 years; median gestation, 21 weeks; 55% newly diagnosed with HIV), 72% of women started ART same-day; this proportion was higher under "Option B+" versus "Option A" (p< 0.001). Of those with adherence assessments data available (n=618), 29% reported at least one missed ART dose during pregnancy. Missed doses were reported more frequently among women with previous use of PMTCT (p=0.014), of younger age (p=0.029) and starting ART under Option B+ (p=0.019). In women initiating ART same-day, 31% reported a missed dose compared to 23% among women who delayed ART start following first ANC visit (odds ratio, 1.07; 95% CI: 0.61 – 1.88). This finding did not vary after adjustment for demographic and clinical measures, and was consistent when restricted to women with CD4 cell counts ≤350 cells/μL. Conclusions: These results suggest same-day ART initiation in pregnant women is not associated with increased non-adherence during the antenatal period. While these results are reassuring for ART programmes implementing "Option B+", further research is required to examine adherence over time, particularly postpartum.

The purpose of this mixed methods research study was to examine the role of adherence barriers to healthcare and the impact that such barriers have on highly active antiretroviral therapy (HAART) compliance for African Americans living with HIV/AIDS. HAART helps reduce HIV/AIDS morbidity and mortality. Of the 49% of study participants who had been out of medical care for more than 12 months, financial concerns were listed as the most common barrier (22.8%). Not having the support from family and friends (17.5%), being tired of going to doctor appointments (15.8%), health challenges (12.3%), lack of transportation (12.3%), and incarceration (12.3%) were also barriers in medical care that had a direct influence on noncompliance. The overall model of the linear regression analysis was significant, R2 = .469, adjusted R2 = .458, F(1, 49) = 43.24, p < .001. Being in medical care on a regular basis accounted for 46.9% of the total variance in attending primary care visits. The outcome of this analysis confirms the hypotheses (HA1) that attending 2 primary care visits within 6 months of being linked to care increased the rate of compliance for African Americans on HAART living with HIV/AIDS. The overall model of the linear regression analysis was significant, R2 = .469, adjusted R2 = .458, F(1, 49) = 7.206, p < .001. Being in medical care on a regular basis accounted for 46.9% of the total variance in attending primary care visits. The outcome of this analysis empasizes the importance of HAART compliance. These findings can lead to positive social changes by improving quality of life and health, which impacts gainful employment, sustains positive relationships, improves finances, and increases self-sufficiency

Adherence to ARV medicines is essential to halt HIV progression, increase CD4 counts, decrease virologic impact, and improve quality of life for the infected people. However, sustaining good adherence among adolescents and young adults (AYA) has been a challenge caused by various problems such as distance to clinic, improved CD4 count which lead to complacency in adherence, and the nature of the environment. This was a quantitative, retrospective, correlational, cross-sectional study anchored by the transtheoretical model, which was used to understand how adherence rate among the study population was impacted by the predictive factors. Secondary data was collected from patient's medical records at the Federal Medical Center, Makurdi in Benue State, Nigeria. Univariate analysis was conducted using descriptive statistics. The study sample size of 656 patients was drawn from AYA ages 15-24 years. Independent t tests showed a statistically significant difference in adherence rates between rural (94%) and urban (89%) AYA, t (424) = -3.280, .001, p -?¤ .05. There was also a statistically significant difference in adherence rates of ART for patients who lived within 50 kilometers of the hospital and those who lived more than 50 kilometers away from the hospital, t (509) = -2.37, .018, p -?¤ .05. Also, there was a statistically significant correlation between adherence rate to ART and CD4 of less than 500 cells/mm3, R = .214, NS = .003, p -?¤ .05. This study provides findings for HIV implementing partners (IPs) and relevant health professionals in Nigeria useful for designing strategies that would improve adherence rate to antiretroviral therapy among AYA in Nigeria.

In this study, exercise adherence levels were examined from archival data collected from 2004 to 2006 to determine if an association existed with the levels of depression among individuals over 49 in 3 rural community centers. Abundant research has shown that exercise is effective in alleviating depression but has not shown how levels of exercise adherence may impact the efficacy of exercise in the treatment of depression. The focus of the study was to determine if an increase in exercise adherence may be associated with a decrease in the symptoms of depression. An ANCOVA was used to determine if differences in levels of depression were significantly associated between low and high exercise adherence. The results did not provide evidence that a high level of exercise adherence is associated with lower symptoms of depression. An independent samples t test was used to determine if gender makes any difference in exercise adherence. The results did not provide evidence that gender made any difference in exercise adherence. An ANOVA was used to determine if the type of exercise was associated with exercise adherence. The results provided significant evidence that select exercises were adhered to more than others. A new study comparing varying levels of exercise adherence, not merely low exercise adherence and high exercise adherence, would allow for a more precise measurement of the association between exercise adherence and depression. It is hoped that providing further insight into an adjunct treatment of depression will result in an increased efficacy of treatment and a positive social change for society.

Indiana University-Purdue University Indianapolis (IUPUI) / Intellectual disability (ID) is considered a high-incidence disability affecting approximately 1.2 million adults in America (Brault, 2012). Diagnosed before the age of 18, ID is characterized by poor intellectual functioning, difficulty with adaptive behaviors, and problems with activities of daily living. Adaptive behaviors include practical, social and conceptual skills. Individuals with ID may lack the ability to personally care for themselves, self-direct and display naïve decision-making capabilities. Activities of daily living, such as maintaining one’s health, are influenced by poor adaptive behaviors. Between the years of 1997 and 2008, the prevalence of developmental disabilities, including ID, has increased 2.2% and while there is research dedicated to determining the risk factors causing ID, there is a continued need to research adaptive behavior management (Boyle et al., 2011). Current research in adaptive behavior focuses on determining best practices in order to help adults with ID thrive in schools, the workplace, home, and in the community. Adaptive behaviors related to healthcare, self-direction, and personal care still continue to be an area of adversity for the population and research on prevalence of healthcare-related problems are growing (Ervin & Merrick, 2014). Health concerns increase with the severity of the ID as well as age (Moss et al., 1993; Schrojenstein et al., 1997). Over 40% of adults with ID will develop four or more chronic diseases with an increase in age (Hsieh, Rimmer, & Heller, 2012). In the typical population, there is a plethora of evidence demonstrating that regular physical activity (PA) reduces the risk for chronic diseases, specifically all-cause mortality, colon and breast cancer, hypertension, cardiovascular disease, obesity, and depression (American College of Sports Medicine, 2013). However, the number of adults with ID participating in regular PA is considerably lower than the typical population. This lack of participation increases individual risk for secondary health conditions. With diminished capabilities in adaptive behaviors, there are significant issues that affect this population’s ability for self-care and independence in health-related care. Additionally, there are limited opportunities for individuals to take steps to improve his or her ability for self-care. Improving the availability of quality instruction for PA and adherence may increase overall PA and reduce incidence and prevalence of chronic disease in adults with ID.

Indiana University-Purdue University Indianapolis (IUPUI) / Medication non-adherence is a major healthcare problem that negatively impacts the health and productivity of individuals and society as a whole. Reasons for medication non-adherence are multi-faced, with no clear-cut solution. Adherence to medication remains a difficult area to study, due to inconsistencies in representing medicationadherence behavior data that poses a challenge to humans and today’s computer technology related to interpreting and synthesizing such complex information. Developing a consistent conceptual framework to medication adherence is needed to facilitate domain understanding, sharing, and communicating, as well as enabling researchers to formally compare the findings of studies in systematic reviews. The goal of this research is to create a common language that bridges human and computer technology by developing a controlled structured vocabulary of medication adherence behavior—“Medication Adherence Behavior Ontology” (MAB-Ontology) using breast cancer as a case study to inform and evaluate the proposed ontology and demonstrating its application to real-world situation. The intention is for MAB-Ontology to be developed against the background of a philosophical analysis of terms, such as belief, and desire to be human, computer-understandable, and interoperable with other systems that support scientific research. The design process for MAB-Ontology carried out using the METHONTOLOGY method incorporated with the Basic Formal Ontology (BFO) principles of best practice. This approach introduces a novel knowledge acquisition step that guides capturing medication-adherence-related data from different knowledge sources, including adherence assessment, adherence determinants, adherence theories, adherence taxonomies, and tacit knowledge source types. These sources were analyzed using a systematic approach that involved some questions applied to all source types to guide data extraction and inform domain conceptualization. A set of intermediate representations involving tables and graphs was used to allow for domain evaluation before implementation. The resulting ontology included 629 classes, 529 individuals, 51 object property, and 2 data property. The intermediate representation was formalized into OWL using Protégé. The MAB-Ontology was evaluated through competency questions, use-case scenario, face validity and was found to satisfy the requirement specification. This study provides a unified method for developing a computerized-based adherence model that can be applied among various disease groups and different drug categories.

Indiana University-Purdue University Indianapolis (IUPUI) / Medication non-adherence and non-compliance left unaddressed can compound into severe medical problems for patients. Identifying patients that are likely to become non-adherent can help reduce these problems. Despite these benefits, monitoring adherence at scale is cost-prohibitive. Social forums offer an easily accessible, affordable, and timely alternative to the traditional methods based on claims data. This study investigates the potential of medication adherence prediction based on social forum data for diabetes and fibromyalgia therapies by using transfer learning from the Medical Expenditure Panel Survey (MEPS). Predictive adherence models are developed by using both survey and social forums data and different random forest (RF) techniques. The first of these implementations uses binned inputs from k-means clustering. The second technique is based on ternary trees instead of the widely used binary decision trees. These techniques are able to handle missing data, a prevalent characteristic of social forums data. The results of this study show that transfer learning between survey models and social forum models is possible. Using MEPS survey data and the techniques listed above to derive RF models, less than 5% difference in accuracy was observed between the MEPS test dataset and the social forum test dataset. Along with these RF techniques, another RF implementation with imputed means for the missing values was developed and shown to predict adherence for social forum patients with an accuracy >70%. This thesis shows that a model trained with verified survey data can be used to complement traditional medical adherence models by predicting adherence from unverified, self-reported data in a dynamic and timely manner. Furthermore, this model provides a method for discovering objective insights from subjective social reports. Additional investigation is needed to improve the prediction accuracy of the proposed model and to assess biases that may be inherent to self-reported adherence measures in social health networks.