This thesis portfolio includes two studies, a qualitative grounded theory of treatment adherence in people who inject drugs (PWID) and a systematic review of staff turnover in substance misuse services. The empirical paper is presented first, the findings of which led to the systematic review. The qualitative interview study arose from observations made within a clinical trial for the treatment of chronic Hepatitis C (HCV). The Chief Investigator of the ERADICATE trial team initially approached the Adult Psychological Therapies Service to investigate what seemed to be an anomaly – patient engagement with HCV treatment had far exceeded expectations. Indeed, positive treatment adherence is not common among PWID. What is more remarkable is participants continued the trial while experiencing the highly aversive side-effects of interferon, a medication known to mimic opioid withdrawal. It is important, if not crucial, to acknowledge the wider socio-cultural context in which this thesis portfolio was produced; the political landscape changed significantly over the course of writing. Divisive judgements about what characteristics make a person worthy and deserving of resources, became more dominant in public discourse and heightened the author’s awareness to these aspects in the data. PWID are among the most marginalised, and stigmatised groups in society. Several of the participants interviewed were homeless and all were at various points on a relapsing trajectory of injecting drug use. Perhaps positive treatment adherence in this population is counter-intuitive because intuition is often based on assumptions derived from implicit biases. Indeed, until 2008, Scottish policy systematically denied HCV treatment to PWID. Due to the assumption that re-infection was inevitable, treatment was seen to be wasteful. Epidemiological studies now show is that public health is significantly improved when PWID are treated, as population prevalence goes down. Completing this thesis led to an examination of fundamental assumptions, not just relating to the participants or the data, but also relating to the question of what Clinical Psychology is. What can we contribute to the science of human behaviour? How does a self-aware mind arise and become autonomous? What leads adults to mentalize and enact their intentionality through particular behaviours, like taking medication? In grappling with these questions, the reader will detect the influence of developmental theorists, Vygotsky, Erikson and Bowlby. Seminal experiments, such as Tronick’s still face (Tronick, 1989)1 and Harlow’s monkeys (Harlow and Zimmerman, 1958)2, alongside newer fields of interpersonal neurobiology and developmental trauma have supplied the soil in which to ground the data gathered in this study. From our earliest days we are designed to absorb stimuli and integrate our perception into a gestalt. When PWID are characterised as “chaotic”, there is a failure to appreciate what this may really reflect: difficulty making sense of internal experience resulting in the absence of order, coherence and meaning. Therefore, the ontological presupposition underlying both the empirical paper and systematic review, is that humans are resilient, relational beings. When the correct conditions and contingencies are in place, our innate propensity to learn and grow can manifest in positive, adaptive behaviour. Narratives are not only ways of seeing the world, but ways of constructing it; we live through and are created by the stories told by others and ourselves (Murray, 2003)3. The public narrative of scepticism that has emerged around scientific endeavour, makes it all the more incumbent upon researchers to carry out their work with personal conviction, integrity and transparency (Rea, 2017, February 22)4. This qualitative analysis was completed with a high level of scientific rigour. Indicators of quality were employed throughout, for example, particular attention was paid to preserving the colloquial expression of participants in transcription and substantiates the authentic representation of their voice. The resultant grounded theory shows that the interpersonal context is a key part of adherence behaviour among PWID. This finding precipitated another question, if good quality relationships are important for patient engagement, how do staff stay engaged in the task of providing consistent, sensitive care on a sustained basis? The current evidence base on supporting and preserving compassion did not substantiate a systematic review, however, the opposite phenomenon, people leaving their jobs has been explored. As Clinical Psychologists we are able to connect with and influence different audiences by skilfully adapting our language. In order to appeal to managers and team leaders, the most pragmatic way of framing staff disengagement, was to examine actual staff turnover as a ‘hard’, concrete outcome. The methodological quality of studies included for review was reasonable in the context of methodological limitations. Findings point to the importance of collective support, good quality relationships and job satisfaction in mitigating against turnover in substance misuse services. This thesis portfolio is a sensitive and pragmatic understanding of engagement in both PWID and staff with the respective systems within which they are embedded. The results are contextualised and oriented toward medical colleagues working in HCV treatment, service leaders and fellow applied psychologists.

abstract: The treatment of individuals with multiple chronic conditions represents the single largest driver of Medicare costs. The use of prescription drugs is a major component in the treatment/management of chronic disease in the United States. Medication nonadherence, however, is a common problem among older adults and leads to significant morbidity and mortality. Whereas, the problem of medication nonadherence has been a primary focus of research for the last thirty years, much is still unknown about which older adults are most at risk for medication nonadherence, as well as what are effective theory-based interventions to improve a person's medication self-management. The purpose of this descriptive explanatory study was to better understand the self-management behavior, medication adherence, in a sample of frail urban older adults. The study used a combination of quantitative and qualitative methods to analyze data from a larger twelve-month study of a nurse care coordination intervention. Ryan and Sawin's (2009) Individual and Family Self-Management Theory served as the study's conceptual framework for identifying the context and processes involved in the older adults' medication self-management. Quantitative results found several individual- as well as family-level predictors for medication nonadherence. Qualitative analyses identified three overarching themes to describe the participants' struggles along the multistep process of medication adherence. Additionally, a cultural domain described the need for more information from participants to understand their nonadherence. Integration of the results further increased our understanding of medication-self management in these frail older adults, and offers direction for clinical practice and future research. / Dissertation/Thesis / Doctoral Dissertation Nursing and Healthcare Innovation 2014

Orientador: Renata Cruz Soares de Azevedo / Dissertação (mestrado) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-16T15:14:10Z (GMT). No. of bitstreams: 1 Fernandes_RejaneFirmino_M.pdf: 1327923 bytes, checksum: c5f699eac7d84c884a1d893ed1ed3933 (MD5) Previous issue date: 2010 / Resumo: Introdução: O tabagismo é a principal causa de morte evitável em todo o mundo. Dados epidemiológicos revelam uma elevada prevalência de tabagismo na população brasileira, ocasionando graves conseqüências à saúde pública em função das patologias tabaco relacionadas. Paralelamente, existe uma demanda crescente por tratamento de tabagismo, todavia, as ofertas de intervenções para auxílio à cessação do uso do tabaco ainda não estão integradas às rotinas dos serviços de saúde no Brasil. Objetivos: Investigar as características sócio-demográficas e clínicas, além de motivos de busca e fatores relacionados à adesão e ao sucesso na cessação tabágica em fumantes que procuraram atendimento. Métodos: Estudo quantitativo, descritivo e prospectivo, avaliou 100 tabagistas que procuraram atendimento pela primeira vez em um ambulatório especializado no tratamento de tabagismo em uma instituição pública universitária. Foram avaliados em seu primeiro comparecimento ao serviço e reavaliados após 4, 8, 12 e 24 semanas. Foram investigadas variáveis sócio-demográficas, clínicas e o questionário de dependência de Fagerström, o Teste URICA, a Escala Hospitalar de Ansiedade e Depressão, o Teste AUDIT e o Questionário CAGE foram aplicados. Foram levantadas razões para busca de tratamento através do questionário sobre fatores motivacionais para cessação, que foram analisados sob perspectiva qualitativa. Resultados: A população do estudo foi composta em sua maioria por mulheres (75%); entre 40 e 59 anos de idade (67%); escolaridade fundamental incompleto (60%); em atividade profissional (53%); com companheiro (54%); com atividades de lazer (57%); portador de doença tabaco relacionada (53%); com tentativas prévias de parar de fumar (70%); que recebeu encaminhamento médico (51%); com dependência elevada (78%) e que recebeu incentivo de alguém para a cessação (66%). O estágio motivacional mais freqüente (43%) foi Contemplação/Ação. A taxa de ansiedade foi de 64% e de depressão 39%. Os tabagistas que aderiram ao tratamento eram principalmente mulheres, sem companheiro, com prática religiosa, em estágio de Contemplação/Ação e aqueles que receberam incentivo de alguém para a cessação. A taxa de cessação entre os que aderiram foi de 3%, 47% e 66% em 4, 12 e 24 semanas e dos que não aderiram 15%, 14% e 18%, respectivamente. O sucesso na cessação se relacionou à presença de lazer, menor escolaridade e presença de doença tabaco relacionada. A análise multivariada para não adesão apontou: sexo masculino (OR 2,83, p= 0,04, IC-1,04-7,66), ter companheiro (OR 3,38, p=0,007, IC-1,39-8,17), não ter recebido incentivo para cessação (OR 3,36, p= 0,01, IC-1,33-8,51), sem prática religiosa (OR 3,02, p=0,02, IC-1,16-7,90) e estágio motivacional Contemplação (OR 3,11, p=0,05, IC-0,98-9,86). O insucesso se relacionou às variáveis receber incentivo familiar (OR 5,91, p=0,004, IC-1,79-19,44 e OR 2,60, p=0,08, IC-0,87-8,26 para 12 e 24 semanas respectivamente), sem incentivo (OR 3,38, p=0,03, IC-1,13-12,90), ausência de doença tabaco relacionada (OR 2,70 , p=0,04, IC-1,01-7,25), ausência de atividades de lazer (OR 3,91, p=0,01, IC-1,39-11,01) e escolaridade médio/superior (OR 4,51, p=0,02, IC-1,22-6,58). Conclusão: A adesão relacionou-se ao gênero feminino, sem companheiro, com prática religiosa, mais motivado a parar de fumar e que recebeu incentivo de alguém para cessação e a cessação tabágica relacionou-se a ter atividade de lazer, ter doença tabaco relacionada, receber incentivo de pessoas que não os familiares e maior motivação / Abstract: Introduction: Smoking is the leading cause of preventable death worldwide. Epidemiological data show high prevalence of smoking in our population, causing serious consequences to public health in light of tobacco related diseases. In parallel, there is an increasing demand for treatment of smoking, however, the offers of interventions to aid cessation of tobacco use are not yet integrated into routine health services in Brazil. Objectives: To investigate the socio-demographic and clinical reasons beyond search and factors related to compliance and success in smoking cessation in smokers who sought treatment. Methods: A quantitative, descriptive, prospective study evaluated 100 smokers who sought treatment for the first time in a clinic specializing in treatment of smoking in a public university. Were evaluated on their first attendance at the service and re-evaluated after 4, 8, 12 and 24 weeks. Were investigated socio-demographic, clinical variables and dependency Fagerström questionnaire, the Test URICA, the Hospital Anxiety and Depression, the Test AUDIT and the CAGE questionnaire were applied. Were raised reasons for seeking treatment through the questionnaire on motivational factors to cessation, which were analyzed from a qualitative perspective. Results: The study population was composed mostly of women (75%) between 40 59 years old (67%), incomplete primary education (60%) and in professional activity 53%), with a partner (54%), with leisure activities (57%) suffering from tobacco related disease (53%), with previous attempts to quit smoking (70%) who received medical referral 51%) with high dependence (78%) and received encouragement from someone forcessation (66%). The more often motivational stage (43%) was Contemplation / Action. The rate of anxiety was 64% and 39% for depression. Smokers who joined to treatment were primarily women, single, with religious practice, in the stage of Contemplation / Action and those who received encouragement from someone for the cessation. The cessation rate among those who joined was 3%, 47% and 66% at 4, 12 and 24 weeks and those who did not join 15%, 14% and 18% respectively. The successful in cessation was related to the presence of leisure, lower education and presence of tobacco related disease. Multivariate analysis for non-compliance noted: male (OR 2,83, p = 0,04, IC 1,04-7,66), having a partner (OR 3,38, p = 0,007, IC-1,39 -8,17) not receiving incentive for cessation (OR 3,36, p = 0,01, IC-1,33-8,51), without religious practice (OR 3,02, p = 0,02, IC-1,16-7,90) and motivational Contemplation stage (OR 3,11, p = 0,05, CI 0,98-9,86). The failure was related to variables receive family encouragement (OR 5,.91, p = 0,004, CI-1,79-19,44 and OR 2,60, p = 0,08, CI 0,87-8,26 for 12 and 24 weeks respectively), with no incentive (OR 3,38, p = 0,03, CI-1,13-12,90), absence of tobacco related disease (OR 2,70, p = 0,04, CI - 1,01- 7,25), no leisure activities (OR 3,91, P=0,01, CI 1,39-11,01) and middle school/high (OR 4,51, p=0,02, CI 1,22-6,58). Conclusion: The compliance related to the female gender, unmarried, with religious practice, more motivated to quit smoking and received encouragement from someone for cessation and tobacco cessation was related to having leisure activity, have tobacco-related disease, receive encouragement of persons other than relatives and more motivated / Mestrado / Ciencias Biomedicas / Mestre em Ciências Médicas

Introduction: The fight against HIV is addressed in both the Sustainable Development Goals and in the 90-90-90-goals set by the United Nations.Emerging evidence is suggesting a “neglected interface” between alcohol consumption and HIV. Earlier studies has sought out to quantify this relationship, but there are still uncertainties regarding the generalizability of the results and if this also applies to different types of drinking intensities. Methods: This study applied a systematic search for articles published between 1990-2017 in Pubmed/Medline. 46 studies was included in the final analysis. Results: Alcohol was found to have a significant detrimental effect on treatment adherence on all drinking intensities. All but one analysis showed a significant amount of heterogeneity. Conclusion: The findings of this study goes in line with previous research but adds insight on the harm of moderate drinking. The result of this and earlier findings give a clear point of direction of alcohol consumption guidelines in people living with HIV. If global targets of viral suppression should be achieved, a more holistic approach where the prevention of non-communicable diseases and infectious diseases go hand in hand might actually be the only way forward.

Magister Public Health - MPH / Background: South Africa has one of the most severe HIV epidemics globally, with an estimated 737,000 AIDS related deaths annually and over a million children rendered orphans due to AIDS in 2006. However in 2007, the South African government made a giant commitment to dealing effectively with the AIDS epidemic by implementing a National Strategic Plan (NSP), which had as one of its principal objectives the provision of antiretroviral medications to 80% of all people in need of the treatment by 2011. By the end of June 2011, the rollout of antiretroviral therapy continued to be successful with 1.4 million persons started on antiretroviral therapy and treatment initiation rates reaching 30, 000 per month. Patients have to subject to an uncompromising adherence of taking at least 95% of antiretroviral medication as prescribed, because poor adherence to ART leads to treatment failure, viral mutations and the development of drug resistance. Of major concern to ART programmes are the current obstacles that patients’ face in lieu of treatment. Aim: The aim of this study was to explore the barriers to adherence to antiretroviral treatment among patients in a public ART programme in Vredenburg, Western Cape. Methodology: An explorative qualitative study was conducted where data was collected through interviews with 18 patients receiving treatment from the Vredenburg hospital. Data was audio-tape recorded, transcribed in full and thematic content analysis done. Results: The study identified awareness of HIV status, disclosure, unemployment, lack of transport,insufficient feeding, disability grants, alcohol and alternative forms of therapy as well as stigma as major barriers to adherence. Whereas inadequate follow ups, recklessness in the way patients’ HIV results were handled, long waiting times and the fear of picking up other types of infections from other patients in the OPD also came under major criticisms from patients. Finally, the sharing of experiences at clinic visits, good healthcare provider’s patient relationships, believing in the treatment, good treatment literacy, being a parent and having children to take care of, the use of pill boxes, social and spiritual support from family members and friends were identified as factors that positively influenced adherence. Conclusion: HIV/AIDS has been a stigmatized illness since its onset in the early 1980s and, these results highlight that such stigma has yet to dissipate in Vredenburg. Therefore, stigma and disclosure must remain at the forefront of the ART programme implementation in Vredenburg; while long term projects that can support ART users economically should be created through partnerships with non-governmental organizations and the government of South Africa to optimize adherence in the community.

Tuberculosis (TB) is an infectious disease and nonadherence to medication can lead to new cases, multi-drug resistant TB, or potential death. Additionally, healthcare professionals and individuals with TB’s knowledge of the disease and medication adherence are crucial for successful completion of medication therapy. Patient education is one of the most important aspects of care provided in healthcare settings (CDC, 1994). TB tends to disproportionally affect minority and economically disadvantaged patient populations. The purpose of this mixed method study was to explore the relationship between spirituality, knowledge, and TB medication adherence among African Americans and Haitians. The primary research question was: What is the relationship between spirituality, knowledge and TB medication adherence among African Americans and Haitians? Quantitative data were gathered from 33 questionnaires and analyzed by two ANOVAs and four chi square analyses. The null hypothesis was not rejected; there was not a statistically significant relationship between spirituality and TB medication adherence (p =.208) among the study’s African Americans and Haitians. Qualitative data concerning participants’ knowledge of TB, gathered from 16 individual interviews further informed this analysis. Secondary research questions examined the role of spirituality, knowledge of TB and medication adherence among African Americans and Haitians. Four common themes emerged across both groups to answer the secondary research questions. Interviews revealed the themes: (a) God is in control, (b) stigmatization of TB, (c) lack of knowledge, and (d) fear of death. The theme lack of knowledge about TB was found to contribute to stigmatization of TB patients. However, in this study stigma and lack of knowledge were related to initial denial of symptoms and delayed diagnosis, but not found to be related to TB medication adherence. This study could help adult educators and health educators enhance their educational interventions, develop a better understanding of adult learning, resulting in early diagnosis and treatment ultimately decreasing transmission of TB, drug resistance, and potential death. Educators should be aware that TB patients’ spirituality may be an important part of how they cope with having TB. A larger scale study, conducted at multiple locations should be conducted to extend the findings of this small scale exploratory study. Further studies should be done to better determine what patient, healthcare provider and health care system factors might mediate relationships that may exist between lack of knowledge of TB, stigma and TB medication adherence.

The objective of this study was to explore the link between school climate and bullying behaviour through a case study of two high schools. Grade 10 students received the two day Cross-Cultural Conflict Resolution (XCCR) Module initiated by YOUCAN. Phase I of this study involved the development of an XCCR Logic Model, which aimed to clarify the objectives and key elements of the XCCR Module. Phase II involved the in depth analysis of the XCCR Module through an 84-item survey and qualitative semi-structured interviews with school and program staff. Data from this study did not indicate any changes in bullying behaviour or school climate between pre-and post-implementation. This study highlights a need to incorporate measures for program adherence and program fidelity in future studies. The results of this study provided two practical contributions, an XCCR Logic Model and information about bullying and school climate for the participating schools.

Class of 2009 Abstract / Objectives: This study utilized a prescription claims database to retrospectively assess the relationship between adherence rates with a mood stabilizer in bipolar type I patients for: gender, age, psychiatric hospitalization rates, cost of services, and concomitant psychotropic medications. Methods: Adult patients with bipolar type I disorder (N=149; F=92 and M=57) who received at least two prescriptions of a mood stabilizer (i.e., carbamazepine, lamotrigine, lithium, oxcarbazepine, and valproic acid) during a 3-month intake period were included. Adherence to the mood stabilizer was retrospectively analyzed using high: >75% (> 274 days) vs. low: < 75% (< 274 days) supply of a mood stabilizer during 12-months. Results: Only 35.6% of the patients (N=53) met the criteria for > 75% adherence and 11.4% (N=17) met the criteria for > 90% adherence. There was a trend toward women having more days supply of a mood stabilizer compared to men (p=0.08) and older patients having a higher adherence rate with a mood stabilizer (p=0.06). The high adherence group had greater prescription costs (p<0.001) and total cost per year (R2=0.34, p=0.064) and more concomitant medications (p=0.04) than the low adherence group. Overall, there were no significant differences between the high and low adherence groups for mean hospital days, inpatient costs, and total cost of care. Among those patients that were hospitalized there was a negative correlation between adherence and inpatient cost (R2=0.49, p=0.024). Conclusions: Our findings suggest that patients with bipolar type I disorder demonstrate poor medication adherence with a mood stabilizer and that adherence rates based on a prescription claims database using two adherence categories may not be a predictive factor for psychiatric hospitalizations or cost of care.

Class of 2006 Abstract / Background: Patients with a medication adherence rate of 80-90 % have the highest incidence of developing drug resistance Human Immunodeficiency Virus (HIV). The optimal adherence rate of 95% is believed to be necessary to prevent resistance to medication therapy in HIV infected patients. This level of adherence can be difficult to achieve because of the complications and complexity of medication regimens currently available for HIV treatment. Objectives: To determine if therapeutic goals set by the patient by having interventional meetings with a pharmacist improved their medication compliance rate and laboratory monitoring. Study Design: A retrospective chart review. Setting: One HIV clinic with two sites. Patients: The estimated population of the clinic was 150 patients. Only data from 14 patients met the criteria of the study and was available for collection. Intervention: Patients met initially with a pharmacist and made medication therapy goals. The patients then returned to the pharmacist at least once in a six-month period to evaluate if the goals were achieved. Measurements: CD4+ counts and viral loads from 6 months before the start of the intervention, at the beginning of intervention, and at least 6 months after the intervention were collected for analysis. Self-reports of achieving goals and self reported compliance were also collected. Results: The results showed there was no significant change in the CD+4 count in either the pre vs. baseline (p=0.0.967) or baseline vs. post- (p=0.551). There was also no significant change in the viral load in either the pre vs. baseline (p=0.388) or baseline vs. post (p=0.344). The mean (± SD) number of pharmacist visits was 2.93 (± 1.77). There was no significant improvement in viral loads (p=0.359) and CD4+ counts (p=0.268) between patient who reported missing medications and those who reported not missing doses. The same was true for patients who reported they met self-goals and those who reported they did not meet their goals (viral load p= 0.421 and CD4+ p=0.411). Conclusions: This study found no significant association between patients who set their own therapeutic goals and visited with a pharmacist and those who did not. However, an important limitation is that only 14 patients met the inclusion criteria for the study and had the required data available. Additional research is needed to more fully evaluate this intervention.

Introduction. The high cost and concern of adverse events, particularly infections, limit the use of biologic disease-modifying anti-rheumatic (bDMARD) therapies. We undertook this retrospective study to document their use for immune-mediated diseases (IMDs) and explore the efficacy, safety, adherence and screening practices prior to initiating bDMARDs in a tertiary referral hospital. Methods. A folder review of all adult and paediatric patients treated for IMDs with bDMARDs at Groote Schuur and Red Cross Hospitals between January 2013 and December 2019. Clinico-demographic particulars, details of bDMARD therapy, and adverse events were collated. Changes in disease activity were measured by diseasespecific tools at 6, 12, 24-months and at the last available visit, and patient adherence to bDMARDs was explored by folder and pharmacy record review. Results. We studied 151 folders, with 182 bDMARDs uses (29 patients used more than 1 bDMARD). Patients were from rheumatology (n= 38: 13 rheumatoid arthritis; 10 spondyloarthritis, 5 Systemic Lupus Erythematosus (SLE) , 5 inflammatory myositis and 5 other conditions); gastroenterology (n=31; 26 Crohn`s and 5 Ulcerative Colitis), dermatology (n=9; psoriasis), neurology (n=4, ophthalmology (n= 25; 6 scleritis, 18 uveitis, 1 optic neuritis), and paediatrics (n= 45, 26 juvenile idiopathic arthritis , 12 SLE, 7 other conditions). The bDMARDs used were TNF inhibitors (112), rituximab (55), tocilizumab (10), anakinra (3), abatacept (1), and tofacitinib (1). The vast majority of patients had an excellent response and were in low disease activity or remission at their last available visit. Adverse events included severe infection (4), tuberculosis (TB) (2), mild infection (4), severe allergic reaction (3), mild skin reaction (14), elevated liver enzymes (2), and worsening interstitial lung disease ILD (1). bDMARD Therapy was discontinued in 18 patients, most commonly due to adverse reaction (9), lack of response (3), poor adherence (2), or remission (1). bDMARD Therapy was changed to alternative therapy in 29 patients, most commonly because of poor response (14), or adverse effects (9) or poor adherence (3). Poor adherence or patients lost to follow-up was noted in 18/182 (9.9%). Complete latent TB infection screening with chest x-ray and TB skin test was performed in only 55 (36.4 %) but INH prophylaxis was given to 51/88 (57.9%) of patients prescribed TNFi therapy. Hepatitis B screening performed in 93 (61.6 %) patients, but most patients (72.2 %) were not tested for Hepatitis B core ab. Hepatitis C screening was performed in 81 (53.6 %) patients. Only 88 (58.3%) patients had a recent HIV test. The majority (17.2%) received the influenza vaccine, but only 24 (15.8 %) received pneumococcal vaccination. Discussion and Conclusion. bDMARD therapy was an effective treatment, and the most common adverse effect was infection (7.2%), with 2 TB infections. Vaccination and screening for TB, viral hepatitis and HIV was suboptimal. Of concern, poor adherence to bDMARDs was frequently encountered.