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Community housing services adopt care models such as rehabilitation, recovery-oriented care and person-centered planning to improve the quality of life of service users with an intellectual or psychiatric disability. However, the way these care models are implemented and practiced can negatively impact service users' experience with the service as their complex needs go unmet. In this paper, we conceptualize these experiences through developing the counternarrative of burdens of support. For this we draw on burden of treatment theory. We conducted ethnographic fieldwork in a community service organization in the Netherlands. This included participant observation (84 h), interviews with service users (n = 20), experts-by-experience (n = 8), family members (n = 10) and photovoice workshops. Our analysis identifies four burdens of support: burden of self-determination; re-identification; responsibilisation and re-placement. The results show that burden of support is very much a relational concept: through their support, professionals can aggravate or alleviate burden.

Points of interestPeople with intellectual or psychiatric disabilities often receive support with living in the community. Good support fits people's needs (e.g. person-centered planning), builds on people's strengths and contributes to recovery and community participation.Even when support is practiced or organized with such aims, service users can have negative experiences. In this research we call this: 'burden of support'.Examples of burden of support identified include:Clients' needs and wishes are sometimes not sufficiently attended too when working with a personal care plan.Too much responsibility is sometimes shifted to clients, which results in feelings of failing or abandonment.The focus on strengths and recovery sometimes leaves too little room for clients to voice support needs.Having to move to a different home or neighborhood as part of becoming more independent can result in many difficulties including loneliness.The research recommended that those who improve services should also alleviate these burdens.

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It is important to evaluate how residents, their significant others, and professional caregivers experience life in a nursing home to improve quality of care based on their needs and wishes. Narratives are a promising method to assess this experienced quality of care as they enable a rich understanding, reflection, and learning. In the Netherlands, narratives are becoming a more substantial element within the quality improvement cycle of nursing homes. The added value of using narrative methods is that they provide space to share experiences, identify dilemmas in care provision, and provide rich information for quality improvements. The use of narratives in practice, however, can also be challenging as this requires effective guidance on how to learn from this data, incorporation of the narrative method in the organizational structure, and national recognition that narrative data can also be used for accountability. In this article, 5 Dutch research institutes reflect on the importance, value, and challenges of using narratives in nursing homes.

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Holmström and co-authors argue for the value of integrating system dynamics into action research to deal with increasing complexity in healthcare. We argue that despite merits, the authors overlook the key aspect of normative complexity, which refers to the existence of multiple, often conflicting values that actors in healthcare systems have to pragmatically develop responses to in their daily practices. We argue that a better theoretical and empirical understanding of the multiplicity of values and how actors deal with value conflicts in daily practices can enrich discussions about complexity in healthcare. We introduce the alternative methodology of 'value exnovation' for action researchers to broaden the scope of system-based thinking and action research in healthcare.

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INTRODUCTION: Experience-based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long-term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. METHODS: Through a participatory research approach, EBCD was adjusted to long-term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. RESULTS: The participatory research resulted in the development of 'Ask us!'-a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long-term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo-voice and involving experts-by-experiences as co-ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo-elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts-by-experience as proxies to share experiences of clients for whom participation in the 'Ask us' method remains inaccessible. CONCLUSION: The result of a robust participatory process, 'Ask us!' is a promising method for participatory quality improvement in long-term care. The research furthermore generated lessons for involving vulnerable populations in participatory research and codesign. PATIENT OR PUBLIC CONTRIBUTION: Clients were involved as informants, sharing their experiences with the care relationship in interviews, photovoice and observations. They were also involved as consultants, helping to analyse input for the film scripts during data validation sessions.

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Mental health professionals are expected to stimulate the participation of service users with serious mental illness. This not only changes what is expected from service users and professionals, it also changes the values underlying their relationship. The value of autonomy becomes more important as a result. This raises potential ethical dilemmas. This paper reports the findings of a thematic synthesis of 28 papers on the views of service users, professionals and family members on the care relationship in inpatient, outpatient and community services for people with serious mental illness. It puts forward various perspectives on participation of service users, foregrounding differing values, which in turn can lead to ethical dilemmas for professionals. The key implications for mental health professionals and future research are discussed.

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OBJECTIVES: Many older adults have significant depressive symptoms but few people access care for these. This study explores which personal, clinical and need factors facilitate or hinder acceptance of a new outreaching preference-led intervention programme. METHODS: From a sample of 9661 community-dwelling 65+ year olds, 244 persons with depressive symptoms according to the Patient Health Questionnaire-9 were included. Data on programme effectiveness in terms of care utilisation were collected. Associations between programme acceptance and personal, clinical and need factors were studied using quantitative (logistic regression analyses) and qualitative methods (semi-structured interviews with 26 subjects, who accepted (n = 20) or declined (n = 6) the programme). RESULTS: Fifty-six per cent (n = 137) took part in the interventions. Quantitative logistic regression analyses showed that participants were more often female, suffered from more severe depressive symptoms and perceived more loneliness. Qualitative analyses revealed that people accepting the intervention programme felt that medical terms as having a depressed mood were applicable to their situation, more often perceived their symptoms as hindering, felt lonely and more often perceived a need for care. They were more often advised by their general practitioner to participate than individuals who refused the interventions. Many participating individuals did not see a match between the intervention programme and their needs, especially with respect to meeting new people. CONCLUSION: Many older persons with depressive symptoms did not feel the need to take part in the programme. Providing support in alleviating loneliness and further adaptation to older adults' illness representations and perceptions when discussing depressive symptoms might enhance care utilisation.

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BACKGROUND: Depressive symptoms are highly prevalent in old age, but they remain mostly untreated. Several clinical trials have shown promising results in preventing or reducing depressive symptoms. However, it is not clear how robust these effects are in the real world of day-to-day care. Therefore, we have implemented the 'Lust for Life' programme, which significantly reduced depressive symptoms in community-dwelling older adults in the first three months after implementation. This mixed-methods study was conducted alongside the trial to develop a contextualised understanding of factors affecting the implementation. METHODS: A total of 263 persons of 65 years and older with depressive symptoms were recruited from 18 general practices and home care organizations in the Netherlands. We used qualitative data (in-depth interviews and focus group discussions with participants with depressive symptoms and healthcare professionals) as well as quantitative data (longitudinal data on the severity of depressive symptoms) to explore hindering and facilitating factors to the implementation of the 'Lust for Life' programme. RESULTS: The uptake of the routine screening was poor and imposed significant burdens on participants and healthcare professionals, and drop-out rates were high. Participants' perceived mental problems and need for care played a key role in their decision to participate in the programme and to step up to consequent interventions. Older people preferred interventions that focused on interpersonal contact. The programme was only effective when delivered by mental healthcare nurses, compared to home care nurses with limited experience in providing mental healthcare. CONCLUSIONS: The intervention programme was effective in reducing depressive symptoms, and valuable lessons can be learned from this implementation trial. Given the low uptake and high investment, we advise against routine screening for depressive symptoms in general healthcare. Further, agreement between the participant and healthcare professional on perceived need for care and intervention is vital. Rather than providing a stepped care intervention programme, we showed that offering only one single preference-led intervention is effective. Lastly, since the provision of the interventions seems to ask for specific skills and experiences, it might require mental healthcare nurses to offer the programme. TRIAL REGISTRATION: Dutch trial register NTR2241.

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ABSTRACT Background: The consequences of co-occurring persistent loneliness and late life depression are yet unknown. The aim of this study was to get a deeper insight into the mental health consequences of loneliness in older persons with depressive symptoms and their perspectives of emotional distress by using a mixed-methods study design. Methods: Two hundred and forty nine community-dwelling older persons with depressive symptoms according to the Patient Health Questionnaire-9 (≥6) were included. A validated cut-off score on the Loneliness Scale was used to distinguish lonely elders from elders who were not lonely. Quantitative and qualitative data were used to examine differences in mental health and perspectives on emotional distress between lonely and not lonely older persons with depressive symptoms. Results: Loneliness was highly prevalent among older persons with depressive symptoms (87.8%). Lonely people suffered from worse mental ill-health (e.g., more severe depressive symptoms, more often a depressive disorder and a lower quality of life) compared to not lonely individuals. Depressive symptoms were regarded as a logical consequence of loneliness. Lonely people perceived little command over their situation: causes of loneliness were attributed externally to perceived deficits in their social networks and they mainly expressed the need to be listened to. Conclusion: Our findings underline the importance of paying considerable attention to (severe) loneliness in older adults with depressive symptoms given its high prevalence and serious mental health consequences. Future studies should look into whether addressing loneliness when discussing depressive symptoms in clinical practice may provide an opportunity to better adjust to older persons' depression perceptions and might therefore improve care utilization.

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How do people describe their health? How do their descriptions relate to public definitions? This article focuses on adult attention deficit hyperactivity disorder (ADHD). We look at Dutch adults who adopt the ADHD label and ask: which discourses structure their descriptions of ADHD? How do these relate to the dominant public discourse on ADHD? Do people use, for example, neurobiological explanations of ADHD? The research makes use of Q-methodology, which combines a discursive relational approach with factor analysis. We examine five different personal discourses that partly differ from the public discourse. People borrow neurobiological, psychological, sociological and even holistic arguments from public discourse to come up with a distinct set of discourses. Neurobiology resonates among adults with ADHD but does not dominate their thinking. Contrary to our expectation, this supports reflexivity instead of discipline theory.

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