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Background: In ageing Western societies, many older persons live with and die from cancer. Despite that present-day healthcare aims to be patient-centered, scientific literature has little knowledge to offer about how cancer and its treatment impact older persons' various outlooks on life and underlying life values. Therefore, the aims of this paper are to: 1) describe outlooks on life and life values of older people (≥ 70) living with incurable cancer; 2) elicit how healthcare professionals react and respond to these. Methods: Semi-structured qualitative interviews with 12 older persons with advanced cancer and two group interviews with healthcare professionals were held and followed by an analysis with a grounded theory approach. Results: Several themes and subthemes emerged from the patient interview study: a) handling incurable cancer (the anticipatory outlook on "a reduced life", hope and, coping with an unpredictable disease) b) being supported by others ("being there", leaving a legacy, and having reliable healthcare professionals) and; c) making end-of-life choices (anticipatory fears, and place of death). The group interviews explained how healthcare professionals respond to the abovementioned themes in palliative care practice. Some barriers for (open) communication were expressed too by the latter, e.g., lack of continuity of care and advance care planning, and patients' humble attitudes. Conclusions: Older adults living with incurable cancer showed particular outlooks on life and life values regarding advanced cancer and the accompanying last phase of life. This paper could support healthcare professionals and patients in jointly exploring and formulating these outlooks and values in the light of treatment plans. [ABSTRACT FROM AUTHOR]

Background: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life. Methods: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. Results: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use. Conclusions: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, 'outside the box' thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines. [ABSTRACT FROM AUTHOR]

Background: Exclusive breastfeeding is widely accepted as a key intervention with proven efficacy for improving newborn survival. Despite international commitments and targets to support and promote breastfeeding, there are still gaps in meeting and maintain coverage in many sub-Saharan African countries. This paper aimed to triangulate the perspectives of health workers, mothers, and their family members with facility assessments to identify gaps to improve breastfeeding support in in Malawi. Methods: The study on breastfeeding barriers and facilitators was conducted in 2019 at one tertiary hospital and three secondary-level hospitals in Malawi. We conducted 61 semi-structured interviews with health workers, postnatal mothers, grandmothers, aunts, and fathers. In 2017, we carried out a neonatal care facility assessment using the World Health Organization (WHO) Integrated Maternal, Neonatal, and Child Quality of Care Assessment and Improvement Tool. Qualitative data were analysed using a thematic analysis approach within the Systems Framework for Health Policy. Results: The district-level hospitals rated high with an average score of 4.8 out of 5 across the three facilities indicating that only minor improvements are needed to meet standards of care for early and exclusive breastfeeding. However, the score fell to an average of 3.5 out of 5 for feeding needs with sick neonates indicating that several improvements are needed in this area. The qualitative data demonstrated that breastfeeding was normalized as part of routine newborn care. However, the focus on routine practice and reliance on breastfeeding knowledge from prenatal counselling highlights inequities and neglect in specialized care and counselling among vulnerable mothers and newborns. Revitalisation of breastfeeding in Malawian facilities will require a systems approach that reinforces policies and guidelines; contextualises knowledge; engagement and empowerment of other relatives to the baby and task-sharing among health workers. Conclusions: Breastfeeding is accepted as a social norm among health workers, mothers, grandmothers, aunts, and fathers in Malawi, yet vulnerable groups are underserved. Neglect in breastfeeding support among vulnerable populations exacerbates health inequities. Health systems strengthening related to breastfeeding requires a concerted effort among health workers, mothers, grandmothers, aunts, and fathers while remaining grounded in contexts to support family-centered hospital care. [ABSTRACT FROM AUTHOR]

Background: Health service providers play a key role in addressing women's need for postpartum pregnancy prevention. Yet, in Nepal, little is known about providers' knowledge, attitudes, and practice (KAP) on providing postpartum family planning (PPFP), particularly the immediate postpartum intrauterine device (PPIUD). This paper assesses providers KAP towards the provision of PPIUDs in Nepal prior to a PPIUD intervention to gain a baseline insight and analyzes whether their KAP changes both 6 and 24 months after the start of the intervention. Methods: Data come from a randomized trial assessing the impact of a PPIUD intervention in Nepal between 2015 and 2017. We interviewed 96 providers working in six study hospitals who completed a baseline interview and follow-up interviews at 6 and 24 months. We used descriptive analysis, McNemar's test and the Wilcoxon signed-rank test to assess KAP of providers over 2 years. Results: The PPIUD KAP scores improved significantly between the baseline and 6-month follow-up. Knowledge scores increased from 2.9 out of 4 to 3.5, attitude scores increased from 4 out of 7 to 5.3, and practice scores increased from 0.9 out of 3 to 2.8. There was a significant increase in positive attitude and practice between 6 and 24 months. Knowledge on a women's chance of getting pregnant while using an IUD was poor. Attitudes on recommending a PPIUD to different women significantly improved, however, attitudes towards recommending a PPIUD to unmarried women and women who have had an ectopic pregnancy improved the least. Practice of PPIUD counseling and insertion improved significantly from baseline to 24 months, from 10.4 and 9.4% to 99% respectively. Conclusions: Although KAP improved significantly among providers during the PPIUD intervention, providers' knowledge on a women's chance of getting pregnant while using an IUD and attitudes towards recommending a PPIUD to unmarried women and women who have had an ectopic pregnancy improved the least. Provider KAP could be improved further through ongoing and more in-depth training to maintain providers' knowledge, reduce provider bias and misconceptions about PPIUD eligibility, and to ensure providers understand the importance of birth spacing. [ABSTRACT FROM AUTHOR]

Background: Many countries are engaged in primary care reforms to support older adults who are living longer in the community. Health Teams Advancing Patient Experience: Strengthening Quality [Health TAPESTRY] is a primary care intervention aimed at supporting older adults that involves trained volunteers, interprofessional teams, technology, and system navigation. This paper examines implementation of Health TAPESTRY in relation to interprofessional teamwork including volunteers. Methods: This study applied Normalization Process Theory (NPT) and used a descriptive qualitative approach [1] embedded in a mixed-methods, pragmatic randomized controlled trial. It was situated in two primary care practice sites in a large urban setting in Ontario, Canada. Focus groups and interviews were conducted with primary care providers, clinical managers, administrative assistants, volunteers, and a volunteer coordinator. Data was collected at 4 months (June–July 2015) and 12 months (February–March 2016) after intervention start-up. Patients were interviewed at the end of the six-month intervention. Field notes were taken at weekly huddle meetings. Results: Overall, 84 participants were included in 17 focus groups and 13 interviews; 24 field notes were collected. Themes were organized under four NPT constructs of implementation: 1) Coherence- (making sense/understanding of the program's purpose/value) generating comprehensive assessments of older adults; strengthening health promotion, disease prevention, and self-management; enhancing patient-focused care; strengthening interprofessional care delivery; improving coordination of health and community services. 2) Cognitive Participation- (enrolment/buy-in) tackling new ways of working; attaining role clarity. 3) Collective Action- (enactment/operationalizing) changing team processes; reconfiguring resources. 4) Reflective Monitoring- (appraisal) improving teamwork and collaboration; reconfiguring roles and processes. Conclusions: This study contributes key strategies for effective implementation of interventions involving interprofessional primary care teams. Findings indicate that regular communication among all team members, the development of procedures and/or protocols to support team processes, and ongoing review and feedback are critical to implementation of innovations involving primary care teams. Trial registration: ClinicalTrials.gov, no. NCT02283723 November 5, 2014. Prospectively registered. [ABSTRACT FROM AUTHOR]

Background: China's healthcare reform programme continues to receive much attention. Central to these discussions has been how the various financial incentives underpinning reform efforts are negatively impacting on the healthcare workforce. Research continues to document these trends, however, qualitative analysis of how these incentives impact on the motivation of healthcare workers remains underdeveloped. Furthermore, the application of motivational theories to make sense of healthcare worker experiences has yet to be undertaken. Methods: The purpose of our paper is to present a comparative case study account of healthcare worker motivation across urban China. It draws on semi structured interviews (n = 89) with a range of staff and organisations across three provinces. In doing so, the paper analyses how healthcare worker motivation is influenced by a variety of financial incentives; how motivation is influenced by the opportunities for career development; and how motivation is influenced by the day to day pressures of meeting patient expectations. Results: The experience of healthcare workers in China highlights how a reliance on financial incentives has challenged their ability to maintain the values and ethos of public service. Our findings suggest greater attention needs to be paid to the motivating factors of improved income and career development. Further work is also needed to nurture and develop the motivation of healthcare workers through the building of trust between fellow workers, patients, and the public. Conclusions: Through the analysis of healthcare worker motivation, our paper presents a number of ways China can improve its current healthcare reform efforts. It draws on the experience of other countries in calling for policy makers to support alternative approaches to healthcare reform that build on multiple channels of motivation to support healthcare workers. [ABSTRACT FROM AUTHOR]

Background: The importance of men's involvement in facilitating women's access to skilled maternal healthcare in patriarchal societies such as Ghana is increasingly being recognised. However, few studies have been conducted to examine men's involvement in issues of maternal healthcare, the barriers to men's involvement, and how best to actively involve men. The purpose of this paper is to explore the barriers to and opportunities for men's involvement in maternal healthcare in the Upper West Region of Ghana. Methods: Qualitative focus group discussions, in-depth interviews and key informant interviews were conducted with adult men and women aged 20-50 in a total of seven communities in two geographic districts and across urban and rural areas in the Upper West Region of Ghana. Attride-Stirling's thematic network analysis framework was used to analyse and present the qualitative data. Results: Findings suggest that although many men recognise the importance of skilled care during pregnancy and childbirth, and the benefits of their involvement, most did not actively involve themselves in issues of maternal healthcare unless complications set in during pregnancy or labour. Less than a quarter of male participants had ever accompanied their wives for antenatal care or postnatal care in a health facility. Four main barriers to men's involvement were identified: perceptions that pregnancy care is a female role while men are family providers; negative cultural beliefs such as the belief that men who accompany their wives to receive ANC services are being dominated by their wives; health services factors such as unfavourable opening hours of services, poor attitudes of healthcare providers such as maltreatment of women and their spouses and lack of space to accommodate male partners in health facilities; and the high cost associated with accompanying women to seek maternity care. Suggestions for addressing these barriers include community mobilisation programmes to promote greater male involvement, health education, effective leadership, and respectful and patient-centred care training for healthcare providers. Conclusions: The findings in this paper highlight the need to address the barriers to men's involvement, engage men and women on issues of maternal health, and improve the healthcare systems -- both in terms of facilities and attitudes of health staff - so that couples who wish to be together when accessing care can truly do so. [ABSTRACT FROM AUTHOR]

Background: Recruitment of participants is particularly challenging in primary care, with less than a third of randomised controlled trials (RCT) achieving their target within the original time frame. Participant identification, consent, randomisation and data collection can all be time-consuming. Trials recruiting an incident, as opposed to a prevalent, population may be particularly affected. This paper describes the impact of a deferred recruitment model in a RCT of antibiotics for children with infected eczema in primary care, which required the recruitment of cases presenting acutely.Methods: Eligible children were identified by participating general practitioners (GPs) and referred to a study research nurse, who then visited them at home. This allowed the consent and recruitment processes to take place outside the general practice setting. Information was recorded about patients who were referred and recruited, or if not, the reasons for non-recruitment. Data on recruitment challenges were collected through semi-structured interviews and questionnaires with a sample of participating GPs. Data were thematically analysed to identify key themes.Results: Of the children referred to the study 34% (58/171) were not recruited - 48% (28/58) because of difficulties arranging a baseline visit within the defined time frame, 31% (18/58) did not meet the study inclusion criteria at the time of nurse assessment, and 21% (12/58) declined participation. GPs had positive views about the recruitment process, reporting that parents valued and benefitted from additional contact with a nurse. GPs felt that the deferred recruitment model did not negatively impact on the study.Conclusions: GPs and parents recognised the benefits of deferred recruitment, but these did not translate into enhanced recruitment of participants. The model resulted in the loss of a third of children who were identified by the GP as eligible, but not subsequently recruited to the study. If the potential for improving outcomes in primary care through complex studies is to be realised, new approaches to recruitment into primary care trials need to be developed and evaluated.Trial Registration: International Standard Randomised Controlled Trials, ISRCTN96705420 . Registered on 27 June 2012. [ABSTRACT FROM AUTHOR]

Background: In November 2016, the ICH published a requirement for sponsors to develop a systematic, prioritised, risk-based approach to monitoring clinical trials. This approach is more commonly known as risk-based monitoring (RBM). However, recent evidence suggests that a 'gold standard', validated approach to RBM does not exist and it is unclear how sponsors will introduce RBM into their organisations. A first step needed to inform the implementation of RBM is to explore academic trialists' readiness and ability to perform RBM. The aim of this paper is to identify the attitudes and perceived barriers and facilitators to the implementation of RBM in academic-led clinical trials in Ireland.Methods: This is a mixed-methods, explanatory sequential design, with quantitative survey followed by semistructured interviews. Academic clinical researchers (N = 132) working in Ireland were surveyed to examine their use and perceptions of RBM. A purposive sample of survey participants (n = 22) were then interviewed to gain greater insight into the quantitative findings. The survey and interview data were merged to generate a list of perceived barriers and facilitators to RBM implementation, with suggestions for, and solutions to, these issues.Results: Survey response rate was 49% (132/273). Thirteen percent (n = 18) of responders were not familiar with the term risk-based monitoring and less than a quarter of respondents (21%, n = 28) had performed RBM in a clinical trial. Barriers to RBM implementation included lack of RBM knowledge/training, increased costs caused by greater IT demands, increased workload for trial staff and lack of evidence to support RBM as an effective monitoring approach. Facilitators included participants' legal obligation to perform RBM under the new ICH-GCP guidelines, availability of RBM guidance and perception of cost savings by performing RBM in future trials.Conclusion: The results of this study demonstrate a need for training and regulatory-endorsed guidelines to support the implementation of RBM in academic-led clinical trials. The study provides valuable insights to inform interventions and strategies by policy-makers and clinical trial regulators to improve RBM uptake. [ABSTRACT FROM AUTHOR]

Background: This paper explores the perspectives of health care providers regarding the use of 7.1% Chlorhexidine Digluconate (CHX) gel that releases 4% chlorhexidine for newborn umbilical cord care under a managed access program (MAP) implemented in Bungoma County of Kenya. Understanding the perspectives of providers regarding CHX is important since they play a key role in the health system and the fact that their views could be influenced by prior beliefs and inconsistent practices regarding umbilical cord care.Methods: Data are from in-depth interviews conducted between April and June 2016 with 39 service providers from 21 facilities that participated in the program. The data were transcribed, typed in Word and analyzed for content. Analysis entailed identifying recurring themes based on the interview guides.Results: Use of CHX gel for cord care in neonates was acceptable to the health care providers, with all of them supporting scaling up its use throughout the country. Their views were largely influenced by positive outcomes of the medication including fast healing of the cord as reported by mothers, minimal side effects, reduced newborn infections based on what their records showed and mothers' reports, ease of use that made it simple for them to counsel mothers on how to apply it, positive feedback from mothers which demonstrated satisfaction with the medication, and general acceptance of the medication by the community. They further noted that successful scale-up of the medication required community sensitization, adequate follow-up mechanisms to ensure mothers use the medication correctly, addressing issues of staffing levels and staff training, developing guidelines and protocols for provision of the medication, adopting appropriate service delivery approaches to ensure all groups of mothers are reached, and ensuring constant supply of the medication.Conclusion: Use of CHX gel for cord care in neonates is likely to be acceptable to health care workers in settings with high prevalence of neonatal morbidity and mortality arising from cord infections. In scaling up the use of the medication in such settings, some of the health systems requirements for successful roll-out can be addressed by programs while others are likely to be a persistent challenge. [ABSTRACT FROM AUTHOR]

Background: Evidence is accumulating on the impact of the recent economic crisis on health and health systems across Europe. However, little is known about the effect this is having on physicians - a crucial resource for the delivery of healthcare services. This paper explores the adaptation to the crisis of public sector physicians and their ability to keep performing their functions, with the objective of gaining a better understanding of health workers' resilience under deteriorating conditions.Methods: We conducted a survey among 484 public primary care and hospital physicians in Portugal's capital city area and explored their perceptions of the crisis, adaptation and coping strategies. We used ordinal and logistic regression models to link changes in hours worked and intentions to migrate with physicians' characteristics and specific answers.Results: We found little evidence of physicians changing their overall allocation of working time before and after the crisis, with their age, types of specialisation, valuation of job flexibility and independence significantly associated with changes in public sector hours between 2010 and 2015. Being divorced, not Portuguese, of younger age, and working a high number of hours per week, were found to increase the probability of physicians considering migration, the same as having a poor opinion of recent government health policies. On the other hand, enjoying their current working environment, not wanting to disrupt provision of service, and leisure time were found to protect against scaling down public sector hours or considering migration.Conclusions: Our work on Portuguese physicians contributes to the debate on health workers' resilience, showing the value of understanding the influence of personal characteristics and opinions on their adaptation to changing circumstances, before designing policies to improve their working conditions and retention. [ABSTRACT FROM AUTHOR]

Background: Community-based programmes, particularly community health workers (CHWs), have been portrayed as a cost-effective alternative to the shortage of health workers in low-income countries. Usually, literature emphasises how easily CHWs link and connect communities to formal health care services. There is little evidence in Uganda to support or dispute such claims. Drawing from linking social capital framework, this paper examines the claim that village health teams (VHTs), as an example of CHWs, link and connect communities with formal health care services.Methods: Data were collected through ethnographic fieldwork undertaken as part of a larger research program in Luwero District, Uganda, between 2012 and 2014. The main methods of data collection were participant observation in events organised by VHTs. In addition, a total of 91 in-depth interviews and 42 focus group discussions (FGD) were conducted with adult community members as part of the larger project. After preliminary analysis of the data, we conducted an additional six in-depth interviews and three FGD with VHTs and four FGD with community members on the role of VHTs. Key informant interviews were conducted with local government staff, health workers, local leaders, and NGO staff with health programs in Luwero. Thematic analysis was used during data analysis.Results: The ability of VHTs to link communities with formal health care was affected by the stakeholders' perception of their roles. Community members perceive VHTs as working for and under instructions of "others", which makes them powerless in the formal health care system. One of the challenges associated with VHTs' linking roles is support from the government and formal health care providers. Formal health care providers perceived VHTs as interested in special recognition for their services yet they are not "experts". For some health workers, the introduction of VHTs is seen as a ploy by the government to control people and hide its inability to provide health services. Having received training and initial support from an NGO, VHTs suffered transition failure from NGO to the formal public health care structure. As a result, VHTs are entangled in power relations that affect their role of linking community members with formal health care services. We also found that factors such as lack of money for treatment, poor transport networks, the attitudes of health workers and the existence of multiple health care systems, all factors that hinder access to formal health care, cannot be addressed by the VHTs.Conclusions: As linking social capital framework shows, for VHTs to effectively act as links between the community and formal health care and harness the resources that exist in institutions beyond the community, it is important to take into account the power relationships embedded in vertical relationships and forge a partnership between public health providers and the communities they serve. This will ensure strengthened partnerships and the improved capacity of local people to leverage resources embedded in vertical power networks. [ABSTRACT FROM AUTHOR]

Background: The "health workforce" crisis has led to an increased interest in health professional education, including MPH programs. Recently, it was questioned whether training of mid- to higher level cadres in public health prepared graduates with competencies to strengthen health systems in low- and middle-income countries. Measuring educational impact has been notoriously difficult; therefore, innovative methods for measuring the outcome and impact of MPH programs were sought. Impact was conceptualized as "impact on workplace" and "impact on society," which entailed studying how these competencies were enacted and to what effect within the context of the graduates' workplaces, as well as on societal health.Methods: This is part of a larger six-country mixed method study; in this paper, the focus is on the qualitative findings of two English language programs, one a distance MPH program offered from South Africa, the other a residential program in the Netherlands. Both offer MPH training to students from a diversity of countries. In-depth interviews were conducted with 10 graduates (per program), working in low- and middle-income health systems, their peers, and their supervisors.Results: Impact on the workplace was reported as considerable by graduates and peers as well as supervisors and included changes in management and leadership: promotion to a leadership position as well as expanded or revitalized management roles were reported by many participants. The development of leadership capacity was highly valued amongst many graduates, and this capacity was cited by a number of supervisors and peers. Wider impact in the workplace took the form of introducing workplace innovations such as setting up an AIDS and addiction research center and research involvement; teaching and training, advocacy, and community engagement were other ways in which graduates' influence reached a wider target grouping. Beyond the workplace, an intersectoral approach, national reach through policy advisory roles to Ministries of Health, policy development, and capacity building, was reported. Work conditions and context influenced conduciveness for innovation and the extent to which graduates were able to have effect. Self-selection of graduates and their role in selecting peers and supervisors may have resulted in some bias, some graduates could not be traced, and social acceptability bias may have influenced findings.Conclusions: There was considerable impact at many levels; graduates were perceived to be able to contribute significantly to their workplaces and often had influence at the national level. Much of the impact described was in line with public health educational aims. The qualitative method study revealed more in-depth understanding of graduates' impact as well as their career pathways. [ABSTRACT FROM AUTHOR]

Background: Integration of sexual and reproductive health (SRH), HIV/AIDS and maternal health (MH) services is a critical strategy to confront the HIV/AIDS epidemic, high maternal mortality and the unmet need for contraception. In 2011 the AIDS Information Centre (AIC) in partnership with the Ministry of Health implemented SRH, HIV/AIDS and MH integration services in the districts of Katakwi and Mubende in Uganda. This paper documents challenges encountered in providing these integrated services in the two districts. Methods: This was a cross-sectional qualitative study conducted in Mubende and Katakwi districts in Uganda. Data were collected using 10 focus group discussions with 89 women attending ANC and postnatal care and 21 key informant interviews with district managers and health workers who were involved in the integrated service delivery. Content thematic approach was used for data analysis. Results: The study findings indicate that various challenges were encountered in integrating HIV, ANC and PNC services. Major challenges included inadequate staff, gaps in knowledge of service providers especially with regard to provision of long-term family planning, limited space, shortage of critical supplies such as HIV test kits, drugs and gloves. Conclusion: These findings indicate that the delivery of integrated HIV, SRH and MH services is hampered greatly by health system challenges and depict the need for additional staffing in health facilities, capacity building of health workers and health managers as well as ensuring sufficient supplies to health facilities for smooth implementation of integrated SRH, HIV and MH services. [ABSTRACT FROM AUTHOR]

Background: The 'Let Me Decide' Advance Care Planning (LMD-ACP) programme offers a structured approach to End-of-Life (EoL) care planning in long-term care for residents with and without capacity to complete an advance care directive/plan. The programme was implemented in three homes in the South of Ireland, with a view to improving quality of care at end of life. This paper will present an evaluation of the systematic implementation of the LMD-ACP programme in the homes. Methods: Focus groups were conducted with 15 Clinical Nurse Managers and two Directors of Nursing where the programme had been implemented. A semi-structured topic guide was used to direct questions that addressed implementation process, challenges implementing advance care planning, advantages/disadvantages and recommendations for the future. Data was analysed using manifest content analysis. Results: Five key categories emerged, with 16 corresponding subcategories. These subcategories emerged as a result of 37 codes. Key benefits of the programme included enhancing communication, changing the care culture, promoting preference-based care and avoiding crisis decision making. Establishing capacity among residents and indecision were among the main challenges reported by staff. Discussion: A number of recommendations were proposed by participants and included multi-disciplinary team involvement, and a blended approach to education on the topic. According to participants relationships with residents deepened, there was a more open and honest environment with family, end of life care focused more on symptom management, comfort and addressing spiritual care needs as opposed to crisis decision making and family conflict. Conclusion: The introduction of the LMD-ACP programme enhanced the delivery of care in the long-term care sites and led to a more open and positive care environment. [ABSTRACT FROM AUTHOR]

Background: Despite the promising benefits of adaptive designs (ADs), their routine use, especially in confirmatory trials, is lagging behind the prominence given to them in the statistical literature. Much of the previous research to understand barriers and potential facilitators to the use of ADs has been driven from a pharmaceutical drug development perspective, with little focus on trials in the public sector. In this paper, we explore key stakeholders' experiences, perceptions and views on barriers and facilitators to the use of ADs in publicly funded confirmatory trials.Methods: Semi-structured, in-depth interviews of key stakeholders in clinical trials research (CTU directors, funding board and panel members, statisticians, regulators, chief investigators, data monitoring committee members and health economists) were conducted through telephone or face-to-face sessions, predominantly in the UK. We purposively selected participants sequentially to optimise maximum variation in views and experiences. We employed the framework approach to analyse the qualitative data.Results: We interviewed 27 participants. We found some of the perceived barriers to be: lack of knowledge and experience coupled with paucity of case studies, lack of applied training, degree of reluctance to use ADs, lack of bridge funding and time to support design work, lack of statistical expertise, some anxiety about the impact of early trial stopping on researchers' employment contracts, lack of understanding of acceptable scope of ADs and when ADs are appropriate, and statistical and practical complexities. Reluctance to use ADs seemed to be influenced by: therapeutic area, unfamiliarity, concerns about their robustness in decision-making and acceptability of findings to change practice, perceived complexities and proposed type of AD, among others.Conclusions: There are still considerable multifaceted, individual and organisational obstacles to be addressed to improve uptake, and successful implementation of ADs when appropriate. Nevertheless, inferred positive change in attitudes and receptiveness towards the appropriate use of ADs by public funders are supportive and are a stepping stone for the future utilisation of ADs by researchers. [ABSTRACT FROM AUTHOR]

Background: Pragmatic randomised controlled trials (PRCTs) aim to assess intervention effectiveness by accounting for 'real life' implementation challenges in routine practice. The methodological challenges of PRCT implementation, particularly in primary care, are not well understood. The Kanyini Guidelines Adherence to Polypill study (Kanyini GAP) was a recent primary care PRCT involving multiple private general practices, Indigenous community controlled health services and private community pharmacies. Through the experiences of Kanyini GAP participants, and using data from study materials, this paper identifies the critical enablers and barriers to implementing a PRCT across diverse practice settings and makes recommendations for future PRCT implementation.Methods: Qualitative data from 94 semi-structured interviews (47 healthcare providers (pharmacists, general practitioners, Aboriginal health workers; 47 patients) conducted for the process evaluation of Kanyini GAP was used. Data coded to 'trial impact', 'research motivation' and 'real world' were explored and triangulated with data extracted from study materials (e.g. Emails, memoranda of understanding and financial statements).Results: PRCT implementation was facilitated by an extensive process of relationship building at the trial outset including building on existing relationships between core investigators and service providers. Health providers' and participants' altruism, increased professional satisfaction, collaboration, research capacity and opportunities for improved patient care enabled implementation. Inadequate research infrastructure, excessive administrative demands, insufficient numbers of adequately trained staff and the potential financial impact on private practice were considered implementation barriers. These were largely related to this being the first experience of trial involvement for many sites. The significant costs of addressing these barriers drew study resources from the task of achieving recruitment targets.Conclusions: Conducting PRCTs is crucial to generating credible evidence of intervention effectiveness in routine practice. PRCT implementation needs to account for the particular challenges of implementing collaborative research across diverse stakeholder organisations. Reliance on goodwill to participate is crucial at the outset. However, participation costs, particularly for organisations with little or no research experience, can be substantial and should be factored into PRCT funding models. Investment in a pool to fund infrastructure in the form of primary health research networks will offset some of these costs, enabling future studies to be implemented more cost-effectively.Trial Registration: ACTRN126080005833347. [ABSTRACT FROM AUTHOR]

Background: Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts. Methods: A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis. Results: Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between ‘two families': relatives and care staff. Six relational values were behind these shifts: ‘being there’ for the person with ID, ‘being responsive’ to the person's needs, ‘reflection' on their own emotions and caring relationships, ‘attentiveness' to the ID person's wishes and expressions of distress, ‘responsibility' for taking joint decisions in the best interests of the person, and ‘openness to cooperation and sharing' the care with others. Conclusions: End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals. [ABSTRACT FROM AUTHOR]

Background and objectives: Women living with HIV/AIDS, in particular, have been positioned as a latent source of infection, and have captivated culpability and blame leading to a highly stigmatised and discriminated life. Despite the situation, women and their particular concerns have largely been ignored in HIV/AIDS research literature. This review aims to examine and analyze the feelings, experiences and perceptions of Women living with HIV/AIDS (WLHA) and will also access the role of support group as a coping strategy on the basis of 7 primary researches conducted in or on different parts of the world. Methodology: A systematic literature search was carried out on major data bases ASSIA, CINAHL, Science Direct, Web of Knowledge, Wiley Inter Science, AMED, Pub Med/Bio Med Central, MEDLINE and Cochrane Library. The articles included for review purpose were gauged against the pre-defined inclusion/exclusion criteria and quality assessment checklist resulting in a final 7 papers. Findings/results: The findings were compiled into five thematic areas: (1) Disclosure as a sensitive issue; (2) Stigma and Discrimination associated with HIV/AIDS and the multidimensional effects on women's health and wellbeing; (3) Internalised Stigma; (4) Women living with HIV/AIDS experiences of being rejected, shunned and treated differently by physicians, family and close friends; (5) Support Group as among the best available interventions for stigma and discrimination. Conclusion: Support groups should be offered as a fundamental part of HIV/AIDS services and should be advocated as an effective and useful intervention. Further research is needed to examine the effect of support groups for women living with HIV/AIDS. A community based randomised controlled trial with support group as an intervention and a control group could provide further evidence of the value of support groups. [ABSTRACT FROM AUTHOR]

Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4–User testing: interviews with caregivers testing the prototype website. Results: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. Conclusions: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia. [ABSTRACT FROM AUTHOR]

Background: Studies show that sexual and gender minorities have unique health care needs and encounter complicated problems to access health services. Drawing on the intersectionality approach, this paper examines the intersecting factors that determine health care seeking behaviour and utilization of health care services among Lesbians, Gays and Bisexuals (LGB) in Ethiopia including the diversity in experiences of these determinants and differences in the coping mechanisms to navigate these challenges within the LGB group. Despite the importance, there remains a paucity of evidence on the topic in Ethiopia. Methods: A concurrent mixed method design was used including survey of 100 LGB, and in-depth interviews and an FGD with 10 and 8 participants, each respectively. The quantitative data was analysed using descriptive statistics. Qualitative data was analysed thematically and triangulated with quantitative data. Results: The results show that heteronormativity intersects with LGB's social position (sexual identity, social network and class) to influence health care need, health seeking behaviour or access to health services. Sexual health and mental health problems are main concerns of LGB, who reported to live under acute anxiety and fear of being exposed, or bringing shame and humiliation to themselves or their families. One of the main emerging themes from the research is the link between mental health and risky sexual practices. Risk perception to HIV was high among LGB, with two-thirds reporting high risk. Only 37.5% (33/88) stated being always motivated to seek care when sick and the rest cited the following barriers that stifled their health seeking behaviour and utilization of health care services: Stigma and discrimination (83%), shame and embarrassment (83%), fear of being discovered (78%), lack of LGB friendly services (45%), affordability (18%), distance (17%), and health care professional refusal (10%). Conclusion: Homophobia and criminalization of homosexuality, and heteronormativity of health care services intersect with LGB's social position resulting in heterogeneity of risk, diversity of sexual and mental health needs, and difference in coping mechanisms (disadvantages and privilege). The main implication of the study is the need to recognize the existence of LGB and their diverse sexual and mental health needs, and link them to appropriate health care and pyscho-social services including HIV/AIDS prevention and treatment. [ABSTRACT FROM AUTHOR]

Background: In Kenya, indirectly caused maternal deaths form a significant portion of all maternal deaths within the health system. Many of these deaths are avoidable and occur during delivery and labor. Poor quality health service has been a recurring concern among women in Kenya, with women reporting interactions with healthcare workers that are often demeaning and abusive. This paper explores the experiences and perceptions of both female patients and healthcare workers regarding mistreatment during childbirth. This study aims to provide recommendations on how dignified care can be made the norm, specifically focusing on a peri-urban setting in Kenya. Methods: The research was accomplished using qualitative research methods with focus group discussions and in depth interviews with women and healthcare workers. The aim was to gain a deeper understanding of the manifestations of mistreatment within the context of a peri-urban setting in Kenya. Results: Female patients reported different forms of mistreatment, such as verbal abuse, physical abuse, neglect, discrimination, abandonment, poor rapport and failure of the health system to uphold professional standards. The healthcare workers described a health system that was weak and fragmented with poor policy support particularly for the new free maternity services policy leading to the mistreatment of women. Conclusion: Newly formed County Governments need to provide resources for a functioning health system to ensure an enabling environment for the provision of high quality maternal health services. This process can include feedback loops with maternity clients to ensure woman-centered services. Policy makers need to strengthen oversight for the implementation of the free maternity services Community health volunteers can be trained to provide this information. Professional associations that govern the standards of quality care for healthcare workers need to address the mistreatment through retraining and norms transformation. [ABSTRACT FROM AUTHOR]

Background: Small private providers in low- and middle-income countries (LMICs) are well positioned to fill gaps in services to low-income populations using Social Health Insurance (SHI) schemes. However, we know little about the practical challenges both private providers and patients face in the context of SHI that may ultimately limit access to quality services for low-income populations. In this paper, we pull together data collected from private providers, patients, and SHI officials in Kenya and Ghana to answer the question: does participation in an SHI scheme affect private providers' ability to serve poorer patient populations with quality health services? Methods: In-depth interviews were held with 204 providers over three rounds of data collection (2013, 2015, 2017) in Kenya and Ghana. We also conducted client exit interviews in 2013 and 2017 for a total of 106 patient interviews. Ten focus group discussions (FGDs) were conducted in Kenya and Ghana respectively in 2013 for a total of 171 FGD participants. A total of 13 in-depth interviews also were conducted with officials from the Ghana National Health Insurance Agency (NHIA) and the Kenya National Hospital Insurance Fund (NHIF) across four rounds of data collection (2013, 2014, 2016, 2017). Provider interviews covered reasons for (non) enrollment in the health insurance system, experiences with the accreditation process, and benefits and challenges with the system. Client exit interviews covered provider choice, clinic experience, and SHI experience. FGDs covered the local healthcare landscape. Interviews with SHI officials covered officials' experiences working with private providers, and the opportunities and challenges they faced both accrediting providers and enrolling members. Transcripts were coded in Atlas.ti using an open coding approach and analyzed thematically. Results: Private providers and patients agreed that SHI schemes are beneficial for reducing out-of-pocket costs to patients and many providers felt they had to become SHI-accredited in order to keep their facilities open. The SHI officials in both countries corroborated these sentiments. However, due to misunderstanding of the system providers tended to charge clients for services they felt were above and beyond reimbursable expenses. Services were sometimes limited as well. Significant delays in SHI reimbursement in Ghana exacerbated these problems and compromised providers' abilities to cover basic expenses without charging patients. While patients recognized the potential benefits of SHI coverage and many sought it out, a number of patients reported allowing their enrollment to lapse for cost reasons or because they felt the coverage was useless when they were still asked to pay for services out-of-pocket at the health facility. Conclusions: Our data point to several major barriers to SHI access and effectiveness for low-income populations in Ghana and in Kenya, in addition to opportunities to better engage private providers to serve these populations. We recommend using fee-for-service payments based on Diagnosis Related Group rather than a capitation payment system, as well as building more monitoring and accountability mechanisms into the SHI systems in order to reduce requests for informal out-of-pocket payments from patients while also ensuring quality of care. However, particularly in Ghana, these reforms should be accompanied by financial reform within the SHI system so that small private providers can be adequately funded through government financing. [ABSTRACT FROM AUTHOR]

Background: Abortion stigma is experienced by women seeking abortion services and by abortion providers in a range of legal contexts, including Uruguay, where abortion was decriminalized up to 12 weeks gestation in 2012. This paper analyzes opinions and attitudes of both abortion clients and health professionals approximately two years following decriminalization and assesses how abortion stigma manifests among these individuals and in institutions that provide care. Methods: In 2014, we conducted twenty in-depth, semi-structured interviews with abortion clients (n = 10) and health care professionals (n = 10) in public and private facilities across Uruguay’s health system. Interviews were recorded, transcribed, and then coded for thematic analysis. Results: We find that both clients and health professionals express widespread satisfaction with the implementation of the new law. However, there exist critical points in the service where stigmatizing ideas and attitudes continue to be reproduced, such as the required five-day waiting period and in interactions with hospital staff who do not support access to the service. We also document the prevalence of stigmatizing ideas around abortion that continue to circulate outside the clinical setting. Conclusion: Despite the benefits of decriminalization, abortion clients and health professionals still experience abortion stigma. [ABSTRACT FROM AUTHOR]

Background: The specific palliative care needs and problems of patients with a substance use disorder and multiple problems, and those of their proxies, are under recognized Besides, the organization of palliative care, including the division of health care professionals' responsibilities, is often unclear. Perspectives of patients and proxies are hardly known. We describe the outline of a study designed to explore how palliative care for patients with a substance use disorder is organized in the Netherlands and to explore problems and needs, as well as possible improvements from the healthcare professionals', patients' and proxies' perspective. The aim of this protocol paper is to provide insights in ways to conduct research with vulnerable research participants and to offer a detailed description of the study design. The broader study aims to gain insight in and formulate recommendations on how to improve palliative care for patients with a substance use disorder. Methods: A qualitative study with patients, proxies and healthcare professionals. Semi - structured interviews will be held with 10 – 15 patients who suffer from a severe substance use disorder. They are in a palliative care trajectory and either diagnosed with a chronic or life-threatening disease or, as a result of addictive behavior, a physical deterioration without the prospect of cure. Semi - structured interviews will also be held with 5 – 10 proxies. Healthcare professionals, volunteers and/or 'experts - by - experience' ( n = 24 – 40) will be participating in semi - structured group interviews. All (group) interviews will be thematically analyzed. Additionally, a strengths, weaknesses, opportunities and threats (SWOT) analysis will be applied to the group interview data with the aim to summarize and concretize the findings. Discussion: Everyone has a right to an optimal end-of-life phase of life and a dignified dying process. This study will provide valuable knowledge about palliative care for patients with a substance use disorder and explicitly bring to light the needs and problems of the patients and their proxies and healthcare professionals in a palliative care phase. [ABSTRACT FROM AUTHOR]

Background: In this paper, we report the results of risk attitudes elicitation of a French general practitioners national representative sample (N=1568).Methods: Willingness to take risks in four different domains (daily life, financial matters, own health and patient health) was collected through a large-scale telephone interview of GPs using self-reported 11-point Likert scale questions.Results: We uncover some specificities of the GPs population regarding their attitudes towards risk. In particular, we detect an important positive gap between their willingness to take risks in the domain of their own health and in the domain of the heath of their patients. This "patient-regarding" risk aversion is discussed with respect to its important consequences regarding medical behavior bias.Conclusions: We confirm the self-other discrepancy found in the medical literature on physicians' behaviors and emphasize the utility of the study and measures of personality traits such as "risk attitudes" for the medical professions and for the population they address. [ABSTRACT FROM AUTHOR]