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Dependency is fundamental to caring relationships. However, given that dependency implies asymmetry, it also brings moral problems for nursing. In nursing theory and theories of care, dependency tends to be framed as a problem of self‐determination—a tendency that is mirrored in contemporary policy and practice. This paper argues that this problem frame is too narrow. The aim of the paper is to articulate additional theoretical ‘problem frames’ for dependency and to increase our understanding of how dependency can be navigated in practices of long‐term care. It does so by way of an empirical ethical analysis of how care professionals tackle the problem of dependency in group homes for people with intellectual disabilities. The paper refers to these practices of mitigating the problem of dependency as ‘dependency work’, a phrase borrowed from Eva Kittay. The analysis of dependency work suggests that for care professionals, dependency is a threefold problem: one of self‐determination, one of parity and one of self‐worth. These findings suggest that patient autonomy cannot be a full solution to the problem of dependency in long‐term care relations. But they also show that dependency as such is not a problem that can be solved, as attempts to mitigate it only serve to tighten the dependency relationship further. This is the paradox of dependency work.

Building on the work of Mbembe (2019) and Silva (2007), we theorise how the obstetric institution can still be considered fundamentally modern, that is, entangled with colonialism, slavery, bio- and necropolitics and patriarchal subjectivity. We argue that the modern obstetric subject (doctor or midwife) representing the obstetric institution engulfs the (m)other in a typically modern way as othered, racialised, affectable and outer-determined, in order to constitute itself in terms of self-determination and universal reason.While Davis-Floyd (1987) described obstetric training as a rite of passage into a technocratic model of childbirth, we argue that students’ rite of passage is not merely an initiation into a technological model of childbirth. The many instances of obstetric violence and racism in their training make a more fundamental problem visible, namely that students come of age within obstetrics through the violent appropriation of the (m)other.We amplify students’ curricular encounters in two colonially related geopolitical spaces, South Africa and the Netherlands, and in two professions, obstetric medicine and midwifery, to highlight global systemic tendencies that push students to cross ethical, social and political boundaries towards the (m)other they are trained to care for. The embedment of obstetric violence in their rite of passage ensures the reproduction of the modern obstetric subject, the racialised (m)other, and institutionalised violence worldwide.

Background: From a phenomenological perspective, our body is the “from-which” we face the world. Vice versa, our body is affected by occurrences in our surroundings. Embodied resilience is understood as a quality of the dynamic relationships between our affected body and what happens in our surroundings.Objectives: This article explores the following question: How is resilience experienced bodily and how can we strengthen resilience and foster social relations?Research design: The data consists of ten in-depth interviews, personal observations and reflexive dialogues with the research team on the lived experiences of the participants. Interpretative phenomenological analysis is applied, and relevant literature is outlined in the discussion and the findings are presented. Findings: We discovered three intertwined experiential dimensions of embodied resilience: the experience of (1) sensing: becoming aware of what bodily happened; (2) connecting: looking for resources; and (3) responding: moving towards a new equilibrium. Discussion and conclusion: Lived, embodied experiences play an important role in the dynamic process of resilience. The body helps us resonate with the world we live in. We recommend researching further how an affective touch can enhance embodied resilience and foster social relationships in organisations.Keywords: affective touch, body awareness, haptonomy, resonance

Many older adults succeed in finding meaning in life, even in deep old age. There is, however, a minority of older adults, in particular among the oldest old, who feel that life no longer makes sense: they suffer from the consequences of old age, explicated in feelings of loneliness, social isolation and disconnectedness, and fears for (further) decline and dependency. This article seeks to address this darker side of ageing. It discusses probing questions including: what can we learn from the stories of those who severely struggle with the consequences of old age? And how might these stories guide us in finding ways how we – both as fellow human beings and as a society – can face and respond to suffering in old age? To achieve this, this article first briefly outlines the scholarship on suffering and explores the idea of suffering from life in old age. Secondly, drawing on empirical work, it reflects on the phenomenological question: what is it like to suffer from life in old age? What does it mean to live with a deep sense that life is no longer worth living? Then, thirdly, building on these insights, the aim is to work towards developing an ethics of suffering that emphasises the primacy of witnessing. It is argued that in the confrontation with manifestations of meaninglessness and suffering that cannot be solved or remedied, we need bystanders who are willing to name, to narrate, to give voice and connect to these experiences of suffering.

CONTEXT: Palliative care aims to support patients' spiritual needs with the intention of promoting their spiritual well-being (SWB), an important dimension of quality of life. SWB is one of the less-studied dimensions of QoL, particularly in a secular country such as the Netherlands.OBJECTIVES: In this study we aimed to get a better understanding of SWB in Dutch patients with advanced cancer. We therefore examined its prominence and associated factors.METHODS: We used the baseline data of a cohort study on experienced quality of care and quality of life (eQuiPe study), which included 1,103 patients with advanced cancer. In addition to sociodemographic and religious/spiritual characteristics, study measures comprised the SWB subscales Meaning, Peace, and Faith of the revised FACIT-Sp-12, spiritual problems and needs (PNPCsv), quality of life (EORTC-QLQ-C30) and satisfaction with healthcare professionals' interpersonal skills (INPATSAT-32).RESULTS: On average, patients experienced quite a bit of Meaning (8.9, SD 2.3), a little bit to somewhat Peace (6.8, SD 2.7), and very low levels of Faith (2.9, SD 3.7). Two-thirds (71%) of patients reported one or more spiritual problems, for which the majority (54%) wanted to receive attention. In the final multivariable models, only a few factors were associated with SWB, such as greater spiritual needs with lower levels of Meaning and Peace.CONCLUSION: Dutch patients with advanced cancer experience medium to low levels of Meaning, Peace, and Faith. More attention for their SWB is warranted.

For people living with multiple sclerosis (MS), one’s own body may no longer be taken for granted but may become instead an insistent presence. In this article, we describe how the body experience of people with MS can reflect an ongoing oscillation between four experiential dimensions: bodily uncertainty, having a precious body, being a different body, and the mindful body. People with MS can become engaged in a mode of permanent bodily alertness and may demonstrate adaptive responses to their ill body. In contrast to many studies on health and illness, our study shows that the presence of the body may not necessarily result in alienation or discomfort. By focusing the attention on the body, a sense of well-being can be cultivated and the negative effects of MS only temporarily dominate experience. Rather than aiming at bodily dis-appearance, health care professionals should therefore consider ways to support bodily eu-appearance.

Recent developments in Dutch society and its healthcare system pose new challenges to humanist chaplaincy. Thus far, chaplaincy has been predominantly rooted in institutionalized religion, but it now has to serve a diversity of people who are increasingly secularized with personal ways of worldviewing. Moreover, chaplaincy is increasingly becoming a profession like many others, reducing the focus on its worldviewing competencies. The main question this article addresses is what this implies for the education of chaplains, more specifically for humanist chaplains who are educated on a Master’s level course at the University of Humanistic Studies. Using the concepts of interprofessional learning communities (Stoll & Seashore Louis, 2007) and dialogical professionalism (Jacobs, 2010), two visions are put forward for developing the education of humanist chaplains that might also be relevant for other chaplaincy educational programs.

A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. This is difficult to sustain without regular encouragement and support of others. Family-based support may be a sustainable and feasible strategy to practice self-management routines. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We used a quasi-experimental pre/post intervention study design with a mixed methods approach. The study population included persons affected by leprosy, lymphatic filariasis and podoconiosis and their family members. All persons affected had visible impairments due to their condition. We collected physical impairment outcomes, data on activity limitations, stigma and family quality of life using the SALSA scale (range 0–80), the SARI stigma scale (range 0–63) and the Beach Centre Family Quality of Life scale (range 0–125) and conducted in-depth interviews and focus group discussions. Quantitative data were analysed using paired t-tests, unequal variances t-tests, linear regression and binary logistic regression. Qualitative data were coded using open, inductive coding and content analysis. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings over the course of several months. A total of 275 (100%) persons affected attended at least one session with a family member, and 215 (78%) attended at least three sessions. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved at follow-up. In addition, family quality of life significantly improved from 67.4 at baseline to 89.9 at follow-up for family members and from 76.9 to 84.1 for persons affected (p, Author summary A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. Family-based support may be a sustainable and feasible strategy to practice self-management. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We collected data on physical impairments, activity limitations, stigma and family quality of life, and conducted in-depth interviews and focus group discussions. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings. A total of 275 persons affected attended at least one session with a family member. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved. In addition, family quality of life significantly improved, and stigma levels significantly decreased after the intervention. Activity levels improved, but not significantly. This proof of concept study showed that the family-based intervention had a positive effect on impairments and self-management of disabilities, family quality of life and stigma.

In these research notes, we present the results of a roundtable and a subsequent process of reflection on the challenges facing researchers in disability studies using creative methods. The roundtable took place at a conference on disability, “Diversity & Belonging: Celebrating Difference” in Athens in 2018. The aim of the roundtable was to explore with other researchers in disability studies the challenges and joys of academic research using creative research methods. Even though the commitment to inclusive research is common in disability studies, the use of creative research methods still feels like pioneering and unconventional. The purpose of the roundtable was to discuss how we can extend the use of creative research methods so that more people can join in research work. In these research notes, we discuss some reflections on the material that came out of our roundtable and from the reflective session we held after the roundtable. From studying these conversations, we identified four insights on the use of creative methods in disability studies: embodiment, discomfort, connection and plurality of voices. Samenvatting In deze research notes presenteren we de resultaten van een roundtable en het daaropvolgend proces van reflectie over de uitdagingen van het toepassen van creatieve onderzoeksmethoden in disability studies. De roundtable vond plaats op het disability-gerelateerd congres “Diversity & Belonging: Celebrating Difference” in Athene, 2018. Het doel van de roundtable was om samen met andere onderzoekers in disability studies de obstakels en kansen van creatieve onderzoeksmethoden in academisch onderzoek te verkennen. Hoewel onderzoek steeds meer inclusief vormgegeven wordt voelt het gebruik van creatieve methodes nog steeds aan als pionieren, baanbrekend en onconventioneel. Het doel van de roundtable was om met andere onderzoekers samen te exploreren hoe we het gebruik van creatieve onderzoeksmethoden kunnen uitbreiden zodat meer mensen kunnen meedoen in onderzoek. In het artikel gaan we in op de resultaten van de roundtable en ons reflectieproces daarna. Door deze gesprekken te bestuderen, identificeerden we vier inzichten over het gebruik van creatieve methoden in disability studies onderzoek: rond embodiment, ongemak, verbinding en meervoudigheid van stemmen.

This paper examines the prevalence of the ideal of “independence” in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault’s vocabulary of governmentality. Such analyses hold that the goal of “becoming independent” subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of “independence” – the “ethic of autonomy” – actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a “first-person” perspective rather than chiefly from a “third-person” perspective. They then draw on Mattingly to cast the group home as a “moral laboratory” in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of (in)dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the “ethic of autonomy” in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices.

Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings’ role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Conclusions: Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents’ and siblings’ views regarding an expected future burden.

Social inclusion policies often assume that community integration is beneficial for all people with disabilities. Little is known about what actually happens in encounters between people with and without severe intellectual disabilities in the public space. Based on social-constructionist and responsive-phenomenological insights, we performed participant observation, semi-structured interviews and researcher reflexivity to study encounters between Harry (pseudonym), a man with a severe intellectual disability, his neighbours, fellow service-users, support professionals, and the first author. A thinking-with-theory strategy was adopted to interpret and deepen observations and reflections. We argue for more ‘experimental-relational spaces of encounter’ between people with and without severe intellectual disabilities, wherein the latter put down their verbal and cognitive weaponry. This proved to be more appropriate for spending ‘quality time’ with Harry then typical satisfactory neighbourhood interactions–often embedded in verbality, habits, routines and rationalizations that do not reflect the existence of people with severe intellectual disabilities. Points of interest An increasing number of people with severe intellectual disabilities live in homes in a neighbourhood setting. However, in everyday neighbourhood life people with and without severe intellectual disabilities hardly ever encounter each other in a way both of them like. The research shows that this lack of pleasant encounters can be related to powerful rules about how we should interact in the public space in the 21st century. In the neighbourhoods we studied, people without intellectual disabilities are in control of these rules. They prefer verbal and cognitive interactions in the public space. Non-verbal and less cognitive approaches are often seen as inappropriate. The research recommends that people without intellectual disabilities should open up for more fitting ways to communicate with people who cannot speak (for themselves).

Diversity is a current buzzword in politics, but in the EU, people with disabilities are not achieving the gains made by women and ethnic minorities. This research examined barriers and facilitating factors through a literature review and interviews with politicians and political activists in five European countries. Six categories of barriers and facilitating factors were found: networks, recruitment and mentoring, resources (money, time and energy), the “hierarchy of impairments,” accessibility of political spaces and activities, and laws and policies. Key recommendations include removing access barriers to political participation, from voting to holding office, including physical and procedural barriers in political spaces; ensuring that equalities legislation covers politicians; eliminating barriers imposed by benefits systems; promoting direct support for political activists, candidates and office-holders with disabilities, including access to necessary services and supports; encouraging parties to recruit and mentor disabled people with leadership potential; and considering quotas and job-sharing. Points of interest Not many disabled people are active in politics. In the EU, about 15% of people have an impairment, but only around 1% of politicians do. Inclusion at school and in social groups makes it easier to get into political jobs or to try to get elected. Some disabled political activists, volunteers, candidates and office-holders don’t get the support they need. Political parties can help by finding disabled people, supporting them, and helping them get involved in politics. Our article provides several ideas about how to make it easier for disabled people to run for office and work in politics.

Context. Providing palliative care can lead to work-related stress and ultimately to burnout. The need for palliative care will further increase due to population aging and people living longer with life-threatening diseases. Therefore, a healthy palliative care workforce is vital. Objectives. This study aims to get insight into the experienced work-related stress among healthcare professionals providing palliative care in the Netherlands and their strategies and needs in relation to maintaining a healthy work-life balance. Methods. A cross-sectional online survey among members of the Dutch Association for Palliative Care Professionals was conducted between February and March 2020. Burnout was assessed by the validated Burnout Assessment Tool. Self-constructed questions assessed strategies and needs of healthcare professionals providing palliative care regarding workrelated stress. Results. In total 179 eligible respondents responded (response rate 54%). Respondents were mostly female (79%) and older than 50 years (66%). Most respondents were nurses (47%) and physicians (39%). Two-thirds of respondents (69%) experienced a median level of burnout and 2% a (very) high level. Furthermore, 7% had been on sick leave due to burnout. Although healthcare professionals engage on average in 3.7 coping activities, a quarter (23%) felt that these activities were not sufficient to maintain balanced. Respondents feel a need for activities aimed at the team and organisation level such as feeling emotionally safe within their team. Conclusion. Symptoms of burnout are quite prevalent among healthcare professionals providing palliative care in the Netherlands. Healthcare professionals have a need for team and organisation approaches to maintain a healthy work-life balance. J Pain Symptom Manage 2021;62:e38-e45. (c) 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Accessible summary The research was conducted by a team of researchers. Some of the researchers have experience of living with a disability. The researchers created training for other research teams that include experts by experience. The training has six parts. To decide what happened in the training, the researchers read articles and asked the research teams they trained about what problems they had and what they wanted to know about. The article tells why and how the training was made. It also says what training is needed for researchers with and without disabilities to learn and work together in a way that feels safe and useful. In developing and providing the training, it was very crucial to search for a safe and welcome space for all people involved (Figure 8). As we don't know what is "safe" for the other, this means we have to search together, in respect and with enough time to get to know each other. Background Researchers collected questions and needs for training from 10 inclusive research projects in the Netherlands. Based on literature research and the information collected, six training modules were developed. Researchers sought to learn how to develop and provide training and coaching to inclusive teams on organising collaboration in the different stages of their research projects. Method An iterative training development process to support inclusive research projects was initiated by a research duo backed by a transdisciplinary team including researchers, trainers and designers. Some members of the team have experiential knowledge based on living with a disability. Results Literature research resulted in four guiding theories, including Universal Design for Learning, Derrida's concept of Hospitality, post-materialist theory looking at agency as an assemblage, and Romiszowski's model situated within Instructional Design theory. Insights gained during development of the training modules are documented with text, figures and vignettes. A core finding was the need to add "Level Zero" to Romiszowski's model: a collective term created for all the interacting issues trainers had to consider because of research group diversity. Conclusions Hospitality formed the heart of "Level Zero." Creating a failure-free space for learning is an important pre-condition for the development and organisation of training. Training can inspire exploration and reflection on collaboration and can illuminate how to conduct research within transdisciplinary teams. Essential practices included working with nonverbal research methods, as these are (more) fit for purpose when including the knowledge of experts by experience and incorporating practice- and stakeholder-based knowledge.

Background and Objectives Meaning in life is an important aspect of positive psychological functioning for older adults. Limited work suggests the relevance of the experience of meaning for people with dementia, but research into this experience from their personal perspective is lacking. The current study provides an in-depth investigation of the lived experience of meaning in life for older adults with Alzheimer’s disease. Research Design and Methods The study was conducted following the phenomenological reflective lifeworld approach. In-depth interviews were conducted with 16 older adults (+65) with Alzheimer’s disease living either at home or in a nursing home in Belgium. Data analysis was an iterative process aimed at illuminating the constituents and essence of the phenomenon. Results The essence of the experience of meaning in life for participants was understood as “continuing to participate in the dance of life as oneself.” This experience was further clarified in four closely intertwined constituents: (a) feeling connected and involved, (b) continuing everyday life as oneself, (c) calmly surrendering and letting go, and (d) desiring freedom, growth, and invigoration. Discussion and Implications Our findings contribute to a deeper understanding of meaning in life as experienced by older adults with Alzheimer’s disease themselves. They emphasize the relevance of the concept for psychological dementia research and offer original insight for the inclusion of meaning in life as an important aspect of holistic dementia care.

Background Leprosy, podoconiosis and lymphatic filariasis (LF) may adversely affect the social, economic and psychological well-being of persons affected and their families. The objectives of this study were to assess and compare family quality of life of persons affected and their family members, explore the relationship between family quality of life and perceived stigma and activity limitations and explore what factors influence family quality of life. Methods A cross-sectional quantitative study was conducted in the Awi zone in Ethiopia. Persons affected and their family members were selected using purposive sampling. Three questionnaires were used: the Beach Center Family Quality of Life (FQOL) scale (range 25–125, with higher scores denoting higher family quality of life), the SARI Stigma Scale (range 0–63, with higher scores denoting higher levels of stigma) and the Screening of Activity Limitation and Safety Awareness (SALSA) scale (range 0–80, with higher scores denoting more activity limitations). Data analysis consisted of simple descriptive analysis and regression analysis. Results A total of 95 persons affected and 117 family members were included. The overall mean of the family quality of life score was 71.7. Persons affected had significantly higher mean family quality of life scores than family members on all domains. Female gender, a smaller family size and occupation were associated with lower family quality of life. We found a mean SARI Stigma score of 22.3 and a mean SALSA score of 37.6. There was no association between the FQOL and SARI scores or between the FQOL and SALSA scores. Conclusions Family quality of life is an important area to address because neglected tropical diseases often affect the whole family. It is therefore important in order to provide appropriate support for persons affected and their family members. Efforts to improve the quality of life of families in which a family member is affected by leprosy, podoconiosis or LF should give priority to women and families with a smaller family size.

IntroductionLeprosy, podoconiosis and lymphatic filariasis (LF) are three skin-related neglected tropical diseases. All three conditions can lead to temporary and permanent impairments. These impairments progressively worsen and are major determinants of stigma, discrimination and participation restrictions. Self-care is essential to prevent disabilities and chronic disease complications. Many persons with leprosy-related, LF-related and podoconiosis-related disabilities need to practice self-management routines their entire life. This is difficult without support and encouragement of others. The objective of this study was to assess the effectiveness of a family-based intervention in terms of physical outcomes related to prevention and self-management of disabilities due to leprosy, podoconiosis and LF and family quality of life and well-being compared with usual practice and care.Methods and analysisThe study will use a cluster-randomised controlled trial design with two study arms. The project will be carried out in endemic districts in East and West Gojjam zones in the Amhara region in Ethiopia. Clusters consist of kebeles (lower administrative structures in the district) that have been merged, based on their geographical proximity and the number of cases in each kebele. A total of 630 participants will be included in the study. The intervention group will consist of 105 persons affected by leprosy, 105 persons affected by LF or podoconiosis, and 210 family members. The control group will consist of 105 persons affected by leprosy and 105 persons affected by LF or podoconiosis. The family-based intervention comprises an essential care package that consists of the following three main components: (1) self-management of disabilities, (2) economic empowerment and (3) psychosocial support. Participants in the control areas will receive usual practice and care. Data analysis includes, but is not limited to, calculating the percentage of change and corresponding 95% CI of physical impairment outcomes in each group, before and after the intervention is implemented, effect sizes, intention to treat and difference in difference analysis.Ethics and disseminationEthical approval has been obtained from the Debre Markos University Health Sciences Institutional Research Ethics Review Committee. Results will be disseminated through peer-reviewed publications, conference presentations and workshops.Trial registration numberPACTR202108907851342.

Background: In recent years there has been increasing attention for the prevalence and prevention of burnout among healthcare professionals. There is unclarity about prevalence of burnout in healthcare professionals providing palliative care and little is known about effective interventions in this area. Aim: To investigate the prevalence of (symptoms of) burnout in healthcare professionals providing palliative care and what interventions may reduce symptoms of burnout in this population. Design: A systematic literature review based on criteria of the PRISMA statement was performed on prevalence of burnout in healthcare professionals providing palliative care and interventions aimed at preventing burnout. Data sources: PubMed, PsycInfo and Cinahl were searched for studies published from 2008 to 2020. Quality of the studies was assessed using the method of Hawkers for systematically reviewing research. Results: In total 59 studies were included. Burnout among healthcare professionals providing palliative care ranged from 3% to 66%. No major differences in prevalence were found between nurses and physicians. Healthcare professionals providing palliative care in general settings experience more symptoms of burnout than those in specialised palliative care settings. Ten studies reported on the effects of interventions aimed at preventing burnout. Reduction of one or more symptoms of burnout after the intervention was reported in six studies which were aimed at learning meditation, improving communication skills, peer-coaching and art-therapy based supervision. Conclusion: The range of burnout among healthcare professionals providing palliative care varies widely. Interventions based on meditation, communication training, peer-coaching and art-therapy based supervision have positive effects but long-term outcomes are not known yet.

According to the International Federation of Social Workers, social work has always been a human rights profession. However, the legalistic language of human rights is often found to be of limited use in the everyday practice of social workers. This article offers a practical and relatable translation of human rights language by operationalising the central human rights value ‘human dignity’. In the city of Utrecht, The Netherlands, empirical qualitative research was conducted in order to investigate what dignity might entail for social workers and service-users. The study reveals four different ways in which service-users experience their dignity to be violated: being seen or treated as an object, an empty space, a child or a monster. Conversely, social workers and service-users also try to maintain dignity in four ways: by treating people as a unique person, a participant, an adult or a (professional) friend. Together, these modes of dignity violation and dignity promotion form a typology termed ‘the dignity circle’. The dignity circle enables practitioners and policymakers to promote dignity in social work whilst helping them to consider the dilemmas and complexities involved. In this way, the dignity circle provides a practical tool for social work as a human rights profession.

Introduction Interest in the use of psychedelic substances for the treatment of mental disorders is increasing. Processes that may affect therapeutic change are not yet fully understood. Qualitative research methods are increasingly used to examine patient accounts; however, currently, no systematic review exists that synthesizes these findings in relation to the use of psychedelics for the treatment of mental disorders. Objective To provide an overview of salient themes in patient experiences of psychedelic treatments for mental disorders, presenting both common and diverging elements in patients' accounts, and elucidating how these affect the treatment process. Methods We systematically searched the PubMed, MEDLINE, PsycINFO, and Embase databases for English-language qualitative literature without time limitations. Inclusion criteria were qualitative research design; peer-reviewed studies; based on verbalized patient utterances; and a level of abstraction or analysis of the results. Thematic synthesis was used to analyze and synthesize results across studies. A critical appraisal of study quality and methodological rigor was conducted using the Critical Appraisal Skills Programme (CASP). Results Fifteen research articles, comprising 178 patient experiences, were included. Studies exhibited a broad heterogeneity in terms of substance, mental disorder, treatment context, and qualitative methodology. Substances included psilocybin, lysergic acid diethylamide (LSD), ibogaine, ayahuasca, ketamine and 3,4-methylenedioxymethamphetamine (MDMA). Disorders included anxiety, depression, eating disorders, post-traumatic stress disorder, and substance use disorders. While the included compounds were heterogeneous in pharmacology and treatment contexts, patients reported largely comparable experiences across disorders, which included phenomenological analogous effects, perspectives on the intervention, therapeutic processes and treatment outcomes. Comparable therapeutic processes included insights, altered self-perception, increased connectedness, transcendental experiences, and an expanded emotional spectrum, which patients reported contributed to clinically and personally relevant responses. Conclusions This review demonstrates how qualitative research of psychedelic treatments can contribute to distinguishing specific features of specific substances, and carry otherwise undiscovered implications for the treatment of specific psychiatric disorders.

Background Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looks at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life. Methodology The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted. Participants, persons affected and their family members, were selected by purposive sampling. Data were collected between August and November 2017 in Awi zone, Northwest Ethiopia and analysed by three independent researchers using open, inductive coding and content analysis. Results A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. We found that participation restrictions, reduced productivity and marginalisation were common. In addition, discrimination in the communities occurred often, often extending to family members of persons affected. Divorce and difficulties in finding a spouse were common for persons affected and their family members. Many persons affected reported mental health problems. While most people got social and physical support from their families, there were a few exceptions. In particular, persons with younger children seemed to lack social support. Having to provide for their affected family member sometimes caused stress, school dropouts and an additional workload. Financial problems and loss of livelihood were reported by almost all participants. Conclusion This study revealed that leprosy, lymphatic filariasis and podoconiosis have an effect on several dimensions of family quality of life. Many problems reported related to stigma and poverty., Author summary Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looked at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life in Northwest Ethiopia. The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted with persons affected and their family members. A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. This study revealed that leprosy, lymphatic filariasis and podoconiosis have an effect on family quality of life, resulting in: participation restrictions, reduced productivity, marginalisation, discrimination, divorce, difficulties finding a spouse, school dropouts, mental health problems and poverty. Both persons affected and their family members were impacted. Many problems reported related to impairments, stigma and poverty. The results of this study can be used to inform leprosy, lymphatic filariasis and podoconiosis treatment and after care programmes.

Geestelijk verzorgers werken al geruime tijdin institutionele contexten, maar daarbuiten(bijvoorbeeld in de thuissituatie) is het nietvanzelfsprekend dat geestelijke verzorgingbeschikbaar is. Met de nieuwe aanpak voorondersteuning van geestelijk verzorgers in dethuissituatie is hier verandering in gekomenvoor mensen in de palliatieve fase (patiëntenen naasten) en voor vijftigplussers. De vraagis echter of de bekostigingsstructuur voordeze zorg past bij de feitelijke contacten.