Title Promoter Affiliations Abstract "Feasibility of patient-centred care approaches at primary health care level in sub-Saharan Africa: the case of Uganda" "Freddie Ssengooba, Marc-Eric Gruénais, Jacqueline Broerse, Bart Criel" "Equity and Health" "Background Primary health care services in sub-Saharan African countries offer the first point of contact for the majority of the population seeking health care, especially in rural areas and for the poor in society. However, they still remain under-resourced and fragmented. This brings out the need to ensure that available resources are allocated more efficiently, to provide services that are of good quality, and in line with the needs and preferences of the users. A changing burden of disease from infectious diseases to non-communicable diseases, combined with new emerging diseases like Ebola, are some of the health issues that health systems in sub-Saharan Africa need to respond to. Patient centred-care (PCC) offers an opportunity for African health systems to build on progress made in primary health care reforms and universal health coverage initiatives, by involving both providers and consumers of services in the identification and implementation of health goals. Considering different social, political, and economic differences in sub-Saharan African countries, patient-centred care strategies and initiatives need to be contextualised for them to be feasible. Objectives The main aim of the study is to explore current initiatives, opportunities and challenges in the delivery of PCC in primary health care services in Uganda. Consequently, an intervention will be designed and implemented to assess the impact of PCC approaches on the quality of versatile health care services provided at both public and private primary care facilities." "A time to care and to be cared for: the wellbeing of childbearing women and the organization of maternity care in a cross-national perspective" "In the post-doc phase of this research two goals are pursued: 1) the impact of the tension between the organisation of formal and informal care and work, for the wellbeing of mothers and fathers will be addressed. 2) The cross-national comparison of Flanders and the Netherlands will be extended with other countries in the preparation for a new data collection. The sociological background for the study of these matters is multi-fold: medicalisation, gender and the welfare state and work-family conflict." "A realist evaluation of the antiretroviral treatment adherence club programme in selected primary health care facilities in the metropolitan area of the Western Cape Province, South Africa" "Brian van Wyk, Bruno Marchal" "Health Policy, Complexity and Health" "Background: Retention in care and treatment adherence are key challenges to national antiretroviral therapy (ART) programmes in Sub-Saharan Africa. Innovative community-based approaches to HIV care and treatment have been proposed and implemented in several Sub- Saharan African countries to improve retention in care and adherence rates of patients on ART. One of such innovations, the „ART adherence club‟ was developed and piloted in the Western Cape Province of South Africa to improve retention in care and adherence among stable ART patients. Results from the pilot intervention showed that the retention in care and adherence to medication rates of these stable patients improved significantly. This resulted in the subsequent roll-out of ART adherence clubs in over 400 primary health care facilities by 2014 in the metro health district of the Western Cape Province. Today, an estimated 20% of all the patients in this region are currently receiving treatment in the adherence club care model. In consultation with programme managers, it was indicated that guidelines for the implementation the adherence care model need to be developed to implement the programme nationwide. Therefore, understanding how the adherence club initiative works within various contexts is crucial to adapting the intervention to new contexts in light of a possible rollout to the rest of South Africa. Aim: The aim of the study is to evaluate the implementation and effects of facility-based antiretroviral adherence clubs in the metro area of the Western Cape Province using the realist evaluation methodology. Methods: In the first phase, an exploratory study, conducted through a document review process and key informant interviews will be used to elicit information to formulate the programme theory. In phase two, a multiple case study design will be used in which qualitative and quantitative data collection and analysis methods will be employed. In this phase, the actual data collection will be carried out on adherence clubs in five contrastive sites. In-depth inverviews will be conducted with purposively selected clinicians and patients for information on the context and mechanisms of the adherence clubs. For the programme‟s primary outcomes (retention in care and adherence), a longitudinal retrospective cohort analysis will be performed using routine patient data obtained from the provincial Department of Health. The data analysis will be conducted in two steps. First, coding the data and classifying the emerging themes using the context-mechanism-outcome (CMO) configuration analytic tools. Second, we will reduce the primitive CMO configurations to conjectured CMO configurations. The final phase, will entail comparing the conjectured context-mechanism-outcome configurations obtained from the second phase with the initial programme theory and refine this accordingly to obtain middle range theories. Significance of study: The study‟s result will inform policymakers and programme managers in the Western Cape province in the scaling up programmes to increase retention in care and adherence to treatment." "Rethinking IPF care: charting the course to person-centred integrated care for idiopathic pulmonary fibrosis together with patients and healthcare professionals" "Wim Wuyts" "Laboratory of Respiratory Diseases and Thoracic Surgery (BREATHE), Academic Centre for Nursing and Midwifery" "Idiopathic pulmonary fibrosis (IPF) is a rare lung disease that has a crude impact on a person's ability to breathe freely due to the progressive accumulation of scar tissue which destructs lung tissue. As a result, patients face debilitating symptoms such as breathlessness and fatigue, and are given a poor prognosis of two to five years after diagnosis if left untreated. Fortunately, there are two anti-fibrotic drugs available that positively impact the survival rate by slowing down disease progression. Nevertheless, the disease is still fatal and despite the positive effects of the medication on disease progression, patients continue to suffer from disease symptoms and experience a reduced quality of life. In addition, the medication needs to be taken long-term and often causes deleterious side effects such as gastrointestinal problems or phototoxicity which need to be managed adequately. On top of that, patients need to manage their psychological wellbeing, preserve a high social integration, and adapt their lifestyle or implement new behaviours such as staying physically active, applying sun protection, and limiting their alcohol use. Since IPF is a chronic illness, patients with IPF and their caregivers need a care system which addresses their individual multidimensional needs, including behavioural needs, values, and preferences (i.e., person-centred) and which subsequently organizes, and coordinates tailored care services by integrating various specialists across settings (i.e., integrated). At this moment, however, the IPF care systems mainly address medical and pharmacological care needs, while less attention is paid to other unique care needs of patients. Moreover, adequate coordination of care whereby multidisciplinary care teams across settings join hands in the patient’s care is rather the exception, than the rule. Given the various challenges faced by patients, healthcare professionals and care systems in dealing with IPF disease, and the fact that we all want the highest quality care for the patients, the question arises as to whether the current care processes need to be rethought and redesigned to provide the person-centred integrated care that patients and informal caregivers need. This is the central question we have investigated in this doctoral work. We particularly focused on the IPF care model at the University Hospitals Leuven as this is one of the three Belgian centres of expertise for IPF diagnosis and management. Also, we used the Chronic Care Model (CCM) as theoretical framework to underpin the inquiry as this model helps researchers and healthcare professionals to reassess and organize the care delivery for chronically ill persons. In a first phase, we thoroughly assessed the current care and the needs of patients with IPF, their informal caregivers and the healthcare professionals involved in the care using a mixed methods approach. More specifically, we conducted a systematic literature review to identify care models/components that have been developed to address the multidimensional care needs of IPF patients (chapter 2). We performed one-on-one in-depth interviews with patients, caregiver and healthcare professionals involved in IPF care to gather their experiences and needs regarding IPF care (chapter 3). We also conducted an observational prospective study to gather insights on patients’ psychological and behavioural needs, including medication adherence (chapter 4 and 5). Our results show that there are challenges related to health literacy, adherence to sun protection recommendations (to manage the phototoxic side effect of pirfenidone), psychological well-being, alcohol consumption, physical activity, and weight management. We also observed that patients face issues with taking their medication as prescribed, as measured by electronic monitoring, and our findings underscore the negative impact medication nonadherence might have on lung function outcomes. Moreover, several suggestions were mentioned during the interviews to provide pro-active care to act upon individual patients’ needs and to expand the team-based multidisciplinary care with an extended role for the nurse. However, a lack of resources was also reported which hampers the involvement of other disciplines such as psychologists and dieticians. Hence, there are opportunities to build bridges and create formal collaborations with community services or healthcare professionals across settings and care levels. Furthermore, we observed a need for a structured care strategy for advance care planning, adherence support, self-management service and behavioural support, among others. In conclusion, despite the limited evidence available in the IPF literature, we noted opportunities to redesign the physician-centred acute care model to person-centred integrated care.  Subsequently, in a second phase, we worked together with stakeholders, including patient representatives to prioritize the opportunities for change (chapter 6), to gather ideas on how to improve the care based on the priorities and to rank order the proposed ideas (chapter 7). As a result, we propose care components that should be integrated in the current IPF care to set the course for person-centred integrated care. These include the screening and assessment of patients’ needs and wish for support, the use of individual care plans developed with the patient and caregiver, and the implementation and follow-up of the action points from the care plan. The important role of advanced practice nurses is emphasised as well as the establishment of networks of expertise (chapter 8).  Altogether, based on our work and in line with principles of person-centred integrated care, we propose elements and goals to be further pursued in research and in routine IPF care, which should be underpinned by stakeholder involvement. These elements refer to placing patients with IPF and their informal caregivers at the centre of the care system, whereby care services are organized according to their individual needs, preferences, and values. In the newly designed integrated care model, a trained and coordinated IPF multidisciplinary team provides the care with the (advanced practice) nurse playing a pivotal role in care coordination activities, nurse-led care, and as the contact point for patients. Moreover, in the new model of care, there are streamlined referral systems and services with community resources and health professionals from other disciplines and across settings, where all actors are adequately informed about IPF and have the core competencies to care for patients with IPF and their informal caregivers. The interaction between the care teams and the IPF patient/informal caregiver is based on person-centred communication and relationships of trust are built. High-quality long-term accessible care, including self-management support is provided. The care is aligned to patients’ needs, values, preferences and health literacy level as well as coordinated and integrated with these community services and healthcare professionals from other disciplines and across settings. Importantly, there is a clinical information system adapted for IPF care which supports the delivery of care (e.g., by integrated evidence-based guidelines) and facilitates the measurement of outcomes that matter to patients. Lastly, the importance of patient advocacy groups and peer support groups is emphasised, with initiatives being sought to better involve these groups in supporting patients and carers." "The effect of advance care planning on family carers’ experiences with and evaluation of end-of-life care: the results of a European multicenter cluster randomized controlled trial" "Aline De Vleminck" "Family Medicine and Chronic Care" "Many patients with advanced cancer receive inappropriate or futile care at the end of life (EOL), which mostly results from a mismatch between patients’ preferences and the norms of current practice. An important prerequisite for care that adequately addresses patients’ preferences is timely and efficient communication. Advance Care Planning (ACP) is a formalized process of communication between patients, their family carers and professional caregivers about patients’ care preferences at the EOL. ACP has shown to enhance care that is consistent with patients’ goals, and improve patients’ quality of life and the quality of care delivered at the EOL. This is the first study to assess the effect of ACP on the experiences with and evaluation of end-of-life care, from the bereaved family carer’s perspective. Family carers can provide valuable information regarding patients' care during the terminal phase of their illness; when patients are often unable to provide the information themselves. We will analyze data on the quality of EOL care from bereaved carers’ perspective that was collected as part of a European multicenter clinical trial to assess the effect of ACP on the quality of life for patients with advanced cancer. To get a more in-depth understanding of these family carers’ experiences with and evaluation of end-of-life care, we will also collect entirely new qualitative data to explore how, from family carers’ perspectives, ACP influenced the achieved EOL care outcomes." "The effectiveness of a blended care program for the discontinuation of benzodiazepines use for sleeping problems in primary care: a clustered randomized trial." "Sibyl Anthierens" "Katholieke Universiteit Leuven, Primary and interdisciplinary care Antwerp (ELIZA)" "Introduction Problematic benzodiazepine use is a global health issue. Although the adverse side effects of longterm use of benzodiazepines are well known, it remains difficult to implement interventions for discontinuation in primary care. Considering the success of blended care for the treatment of sleeping disorders and the support of substance use disorders, evidence suggests that a blended care approach, combining face-to-face consultations with the general practitioner with web-based self-learning by the patient, is beneficial for the discontinuation of chronic benzodiazepine use for primary insomnia in general practice. Therefore, the aim of this study is to evaluate the effectiveness of such an approach for the discontinuation of benzodiazepine and zdrugs ((z-)BZD) use in the long term and evaluate the implementation process. Methods and analysis This study is a multicenter, pragmatic, cluster randomized controlled trial with 1200 patients, included by 120 general practitioners. Allocation to usual or blended care happens at the level of the general practice in a 1:1 ratio using a block randomization system stratified per language. The study population consists of adult primary care patients who have been using (z-)BZD for primary insomnia on a daily basis for at least six months. Primary outcome measure is the proportion of patients that discontinued (z-)BZD at 12 months assessed by toxicological screening for (z-)BZD in urine. Secondary outcomes include discontinuation of (z-)BZD at 6 months, quality of life, and the number of defined daily doses of (z-)BZD prescribed. Data will be collected using a study-specific online platform and analyzed using the intention-to-treat approach. The process of implementing blended care will be evaluated in a nested study." "Culturally competent and sensitive care: study on perceptions, needs and barriers of healthcare professionals and informal carers to improve quality of care for patients with a migration background" "Liesbeth De Donder" "Participation and Learning in Detention, Educational Science, Faculty of Psychology and Educational Sciences, Society and Ageing Research Lab" "Western regions encounter large numbers of different nationalities, which translates into an increasing number of patients from diverse ethnic, religious and linguistic background. Scientific research highlights that patients from minority groups receive lower quality of care, and inequities and disparities towards these groups can be found in healthcare. Culturally competent and sensitive care is often cited as a solution to meet these inequities and to provide appropriate care, regardless of the patients background. However, in the field of cultural competent care, 3 research gaps can be detected, which translate into the following research questions. It remains unclear: 1) how healthcare professionals define, perceive and (try to) deliver culturally competent and sensitive care for patients with a migration background; 2) how informal carers of patients with a migration background perceive the cultural competency and sensitiveness of the care they receive; 3) how we can train future healthcare professionals in becoming more culturally competent and sensitive. The goal of the current project is to gain more knowledge about the perspective of the healthcare professional and the informal carer by means of interviews and focus groups. Based on these insights a training will be developed and tested. In doing so, my research project will thus generate innovative knowledge and training development that enables a better understanding of culturally competent and sensitive care." "Connected Care: Reconfiguration of care for the elderly in Indian transnational families" "Jeannette Pols, Koen Peeters" "Socio-ecological Health Research" "In India, family structures are changing dramatically due to the recent phenomenon of female labor migration. The social and economic realities of ageing and elder care are no longer national issues, as families, governments, and a number of public and private institutions organize care in transnational spaces. The study focuses on the care for Indian elderly whose daughters’ migrated to Oman as trained nurses. The research will explore how care is re-organized in transnational social space as children who are no longer providing care for their elderly parents “on site” are increasingly doing so from a distance by making use of new information and communication technologies (ICT). Moreover, it will examine physical, mental and social risks for the elderly in these families, particularly addressing the syndemics between depression, suicide, eating disorders and chronic illness among the elderly in relation to their social abandonment in the Indian culture where kin relations and co-habitation are crucial to individual’s health and wellbeing. The study will be relevant to current governmental, national and international bodies’ interests to understand the emerging practices of care for the elderly in the context of global migration. It will also offer a significant insight that will be useful in design and development of support interventions, including the use of ICT, for de facto childless elderly in local communities and the transnational social space." "Using compassionate communities to improve palliative care initiatives in low-income urban settings in Cape Town, South Africa" "Peter Decat" "Department of Public Health and Primary Care" "This project addresses the need to enhance palliative care (PC) in South Africa by establishing Compassionate Communities of Care (CCCs), focusing on community-led support for advanced illness patients. It leverages partnerships and lessons from global initiatives. The project aims to establish CCCs, improve PC interactions, and integrate the CCC framework into research and capacity-building efforts. Key outcomes include community ownership, heightened awareness, and sustainable collaboration." "Households in mental health care: an experimental study on the role of the household in the care for people with a severe mental illness in South Africa." "Edwin Wouters" "University of KwaZulu-Natal, Centre for Population, Family and Health" "South Africa has a high burden of severe mental illness – such as schizophrenia, bipolar disorder and major depressive disorder. In step with global movements and budgetary limitations, the country promotes deinstitutionalisation – from hospitals to local communities – to care for these people living with severe mental illness (PSMI). This push towards deinstitutionalisation, however, has not been fit with an according health care model in these communities. PSMI are discharged into a household context without any support – often resulting in treatment non-adherence and a cyclical pattern of short readmissions to the hospitals that they have been discharged from, following relapses in treatment gains. In the context of limited resources for deinstitutionalized mental health care, research into the potential of the household in the care for discharged PSMI is a clear priority. We hypothesize that improving the mental health knowledge and communication skills of households will enable ownership of the problem and increase social support to the PSMI. This will eventually positively impact treatment adherence and lower re-admission rates of PSMI. Aim of this project is to develop and test an intervention stimulating this mental-health competence of households – in a cluster randomized-controlled trial using a longitudinal process evaluation. As such, this project responds to the urgent need in many low- and middle income settings to optimize the deinstitutionalisation of PSMI."