Healthcare and housing provision for a UK homeless community: a qualitative service evaluation.

OBJECTIVES: Homelessness is both a significant determinant and consequence of health and social inequalities. To better meet healthcare needs, dedicated mental health and general nurses were implemented to deliver outreach healthcare to people experiencing homelessness in one United Kingdom (UK) county. During COVID-19, the UK Government also instructed local authorities to accommodate individuals sleeping rough and have a national target to end rough sleeping. This qualitative study explored experiences of this nurse-let outreach service and housing journeys during and beyond COVID-19 among people experiencing homelessness. STUDY DESIGN: Face-to-face, narrative storytelling interviews were conducted via opportunistic sampling in community settings. Individuals with recent or current experiences of homelessness were eligible. METHODS: Participants were informed about the study via known professionals and introduced to the researcher. Eighteen narrative interviews were conducted, transcribed, and analysed using reflective thematic analysis. RESULTS: Individuals described complex journeys in becoming and being homeless. The nurse-led outreach service provided integral support, with reported benefits to person-centred and accessible care and improved outcomes in health and well-being. After being housed, individuals valued housing necessities and described new responsibilities. However, some participants did not accept or stay in housing provisions where they perceived risks. CONCLUSIONS: Interviewed participants perceived that the dedicated nurse-led outreach service improved their access to care and health outcomes. In the absence of dedicated provisions, mainstream healthcare should ensure flexible processes and collaborative professional working. Local authorities must also be afforded increased resources for housing, as well as integrated support, to reduce social and health inequalities.

"It was too much for me": mental load, mothers, and working from home during the COVID-19 pandemic.

This study analyses the experiences of working from home (WfH) during the COVID-19 pandemic and the impact it has on working mothers through the lens of "mental load." Remote study, often lauded as a way to reduce work/life conflicts, can bring new multifaceted challenges for working mothers and, as this study shows, suddenly shifting to remote work led to the boundaries among work, care, and domestic labour becoming blurred. The data used here are from narrative interviews collected as part of the RESpondIng to outbreakS through co-creaTIve inclusive equality stRatEgies (RESISTIRÉ) Horizon 2020 project, which analyses the impact of COVID-19 policies on gendered inequalities across the EU27 and Türkiye, Serbia, UK, and Iceland. We draw on 12 narratives from working mothers in Austria, Bulgaria, Czechia, Denmark, Ireland, Estonia, Greece, Portugal, Netherlands, the United Kingdom, and Slovakia. Employing thematic analysis, the analysis of these narratives, illuminates the challenges and opportunities of WfH and highlights its impact on mental load. While adding to the research on WfH and working mothers, the analysis also illustrates the lessons to be taken forward as well as underscoring the importance of mental load both theoretically and empirically.

Listening to Caregivers: Narratives of Health Seeking for Children Under Five with Pneumonia and Diarrhea: Insights from the NIGRAAN Trial in Pakistan.

Background: Understanding health-seeking behaviors of caregivers is important to reduce child mortality. Several factors influence decision-making related to childhood illnesses. Objective: The objective of this study was to gather caretaker narratives to develop a comprehensive understanding of the context and process of caregiving at household level during all stages of an episode of diarrhea and pneumonia in children <5. Methods: Using a narrative interview approach, stories from caregivers of children <5 were collected from a rural district in Sindh Pakistan. Eleven households with children <5 were randomly selected and purposive sampling was done to interview 20 caregivers. All data collection was conducted privately in participants' homes and informed consent taken. Manual content analysis was carried out by three independent researchers and emerging themes drawn. Results: The role of joint family system is integral in making decisions and the child's paternal grandmother, is an important and trusted source of information regarding child sickness in the household. They often promote home remedies with considerable authority prior to formal consultation with the health care system. Caregivers were generally dissatisfied with doctors in the public sector who were perceived to be providing free consultation with a poor quality of care and long waiting time as compared to private doctors. Financial considerations and child support were favorably addressed in households with a joint family system. Conclusion: The joint family system provides a strong support system, but also tends to reduce parental autonomy in decision-making and delay first contact with formal health providers. Prevalent home remedies, and authority of elders in the family influence management practices. Interventions for reducing improving child mortality should be cognizant of the context of decision-making and social influences at the household level.

Application and Extension of the Alcohol Recovery Narratives Conceptual Framework.

Recovery narratives are personal stories of health problems and recovery. A systematic review proposed a conceptual framework characterising alcohol misuse recovery narratives, consisting of eight principal dimensions, each with types and subtypes. The current study aims to apply and extend this preliminary conceptual framework. Semi-structured interviews were conducted to collect alcohol misuse recovery narratives from adult participants. A two-stage inductive and deductive thematic analysis approach was used to assess the relevance of the dimensions and types included in the preliminary conceptual framework and identify new components. The sample consisted of 11 participants from diverse socioeconomic backgrounds who had previously displayed varying degrees of alcohol misuse. All conceptual framework dimensions (genre, identity, recovery setting, drinking trajectories, drinking behaviours and traits, stages, spirituality and religion, and recovery experience) were present in the collected narratives. Three dimensions were extended by adding types and subtypes. Whilst the existing conceptual framework fitted the collected narratives, a new dimension describing the alcohol environment was required to fully characterise narratives. Types included in the alcohol environment dimension were policy and practice and social dynamics. The extended framework could guide the production of resources enabling clinicians to engage with narratives shared by their clients.

'Pretty cathartic actually': Reflections on the attempt to reduce re-traumatization of researchers and nurses taking part in a longitudinal interview study.

AIM: To critically evaluate the concepts of harm and re-traumatization in the research process and to explore the ethical implications of conducting research on distressing topics using our research on the experiences of nurses working during the COVID-19 pandemic as an exemplar. DESIGN: Longitudinal qualitative interview study. METHODS: Using qualitative narrative interviews, we explored the impacts of the COVID-19 pandemic on nurses' psychological well-being in the UK. RESULTS: To reduce the potential for harm to both research participants and researchers, the members of the research team were keen to establish ways to reduce the power differential between the researcher and participants. We found that our collaborative and team-based approach, with participant autonomy and researcher reflexivity embedded into the research framework, enabled the sensitive generation of data. CONCLUSION: Reduction of potential harm for both participants and researchers in the generation of at times highly distressing data with a traumatized population was achieved through a respectful, honest and empathetic approach within a team that met frequently for reflection. IMPACT: The research participants were not harmed by our research, instead they expressed gratitude at being given space and time to tell their stories in a supportive environment. Our work advances nursing knowledge through accentuating the value of giving autonomy to research participants to control their stories whilst working within a supportive research team with emphasis placed on reflexivity and debriefing. PATIENT AND PUBLIC CONTRIBUTION: Nurses working clinically during COVID-19 were involved in the development of this study. Nurse participants were given autonomy over how and when they participated in the research process.

Attitudes toward and patterns of medication use among people with serious mental illness: There's more than meets the eye.

Background and aim: There are growing concerns about the long-term effects of psychiatric medication after a major psychiatric crisis. Recent evidence shows a diverse impact of long-term use on various outcome domains, which may help explain why non-adherence is so common. In the current study we explored the subjective perceptions of factors that impact both attitudes toward and patterns of use of medication among individuals with serious mental illness (SMI). Method: Sixteen individuals with an SMI and a recognized psychiatric disability who had used psychiatric medication for at least 1 year were recruited for the study via mental health clinics and social media. Participants were interviewed using a semi-structured interview based on the narrative approach, focusing on attitudes toward and patterns of use of psychiatric medication. All interviews were transcribed and analyzed using thematic analysis. Results: Three discrete sequential phases emerged, each characterized by different themes referring to attitudes toward medication and patterns of use: (1) "loss of self" and a high level of medication use; (2) accumulating experiences of using/reducing/stopping medication; and (3) forming more stable attitudes toward medication and developing one's own pattern of use. The transition between phases was dynamic in nature and represents a non-linear process. Complex interactions were generated at different phases between the related themes, which shaped attitudes toward medication and patterns of use. Conclusions and implications: The current study reveals the complex ongoing process of forming attitudes toward medication and patterns of use. Recognizing and identifying them via a joint reflective dialog with mental health professionals can enhance alliance, shared decision-making, and person-centered recovery-oriented care.

Deeply lonely in the borderland between childhood and adulthood - Experiences of existential loneliness as narrated by adolescents.

BACKGROUND: Adolescence is associated with different feelings and experiences that can negatively affect adolescents' health and well-being. In the transition between childhood and adulthood, experiences of loneliness are common. A deep form of loneliness is described as existential loneliness. Studies among adults have shown that existential loneliness often arises in connection with transitions and is related to suffering, but may lead to positive experiences when acknowledged and addressed. Therefore, the aim of this study was to explore adolescents' experiences of existential loneliness. METHODS: This was an exploratory-descriptive qualitative study based on narrative interviews with 16 adolescents (median age 17.5). The data were analysed inductively using qualitative content analysis. FINDINGS: Existential loneliness among adolescents was related to experiences of social exclusion and "in-betweenness". To alleviate their suffering, the adolescents tried to avoid burdensome feelings and thoughts, and they chose between sharing or not sharing their inner lives with someone else. CONCLUSIONS: It is important to support adolescents' sense of belonging, and they may need assistance in dealing with existential loneliness, as well as with finding constructive and healthy ways of recuperating from the suffering. Professionals need knowledge of existential loneliness to promote adolescents' existential health and well-being.

Being affiliated to a cystic fibrosis centre is important for parents' everyday life.

AIM: Newborn screening represents a paradigm shift in the treatment of children with cystic fibrosis. This study aimed to explore parents' everyday life experiences from the time of diagnosis and in the following months. METHODS: Narrative interviews were conducted at Aarhus University Hospital, Denmark, with parents (mothers = 15 and fathers =14) of 15 term-born children with a mean age of 2 weeks (range 1-3.5 weeks). Participant observation and field notes were used to complement interview data. The analysis was inspired by Kvale and Brinkmann. RESULTS: Three themes were identified. First, on diagnosis, a profound difference in parents' experience was observed depending on whether the diagnosis was communicated by a medical doctor from the cystic fibrosis team or by a paediatrician from another hospital. Second, during the initial meetings and subsequent relationships with the cystic fibrosis team, the knowledge and calmness exhibited by the doctors and nurses were very valuable. Third, regarding everyday life after the diagnosis, most parents described experiencing anxiety and concern for their child's future. CONCLUSION: The parents' experiences highlighted essential elements that should be implemented to optimise the patient care pathway as they are fundamental to parents' ability to cope with the new living conditions.

Co-designing an Integrated Care Network With People Living With Parkinson's Disease: From Patients' Narratives to Trajectory Analysis.

An integrated care model for people living with Parkinson's disease (PD) offers the promise of meeting complex care needs in a person-centered way that addresses fragmentation and improves quality of life. The purpose of our research was to co-design a care delivery model that supports both social and medical care from the perspective of patients and care partners. In the first step of our co-design approach, participants from five countries were invited to share their experiences of living with PD during a narrative interview. A qualitative analysis of these narrative interviews based on the Corbin and Strauss model was done to map out patients' trajectories. Three typical trajectories were identified: (a) the "unpredictable" trajectory, (b) the "situated" trajectory, and (c) the "demanding" trajectory. Based on the analysis of these trajectories, we were able to integrate various patient experiences into the design of an integrated care network.

Meanings of participation in care for older people after hip fracture surgery and nurses working in an orthopaedic ward.

PURPOSE: The aim of this study was to elucidate meanings of participation in care for older people after hip fracture surgery and nurses working in an orthopaedic ward. METHODS: A qualitative phenomenological hermeneutical design was used. We conducted personal interviews with a narrative approach with 11 older people recovering from hip fracture surgery and 12 nurses working in an orthopaedic ward. RESULTS: The results show that for older people, participation meant being a co-creator in their own care, founded on being met with sensitivity and support, being told what is going to happen, taking responsibility and asking questions and being able to influence care. For nurses, patient participation meant meeting the patients' needs and requests by being open and allowing them to influence care while at the same time recognizing that the patients' possibility to influence care was limited. CONCLUSION: The study shows that for older people and nurses, the phenomenon of participation has similar meanings but also differences. When older people participate in their care, they become a co-creator in care and confirmed as a person. This highlights the importance of a nurse-patient relationship built on trust, connectedness and communication based on a shared understanding.

Health Professionals' Experiences Regarding Alcohol Consumption and Its Relation to Older Care Recipient's Health and Well-Being.

BACKGROUND: Alcohol consumption among older people is expected to increase in the years ahead. Health professionals' experiences of, and reflections on, alcohol consumption and its relation to well-being are thus important to the provision of adequate and high-quality treatment and care. AIM: To investigate health professionals' experiences and reflections about alcohol consumption among older people and how it is related to their health and well-being. METHODS: A case study design approach was adopted, incorporating three qualitative studies involving Norwegian health professionals. The health professionals interviewed included workers in nursing homes, home care professionals and general practitioners. RESULTS: The study revealed a diversity of views and reflections on alcohol consumption, its facilitation, and the impact on the health and well-being of older patients and care recipients. Six themes were revealed by the three studies: (i) the facilitation of alcohol consumption to promote and normalize life in nursing homes, (ii) the restriction of unhealthy alcohol consumption, (iii) attempts to discuss alcohol consumption with care recipients, (iv) the initiation of collaboration with informal caregivers in restricting alcohol consumption, (v) minimalizing the dialogue regarding alcohol consumption to guard patient privacy and (vi) a desire for joint action and a national political strategy. CONCLUSION: Health professionals working in NHs, in-home and GPs find it difficult to discuss the use and elevated use of alcohol with older people for whom they have care and treatment responsibilities. In general, they are concerned that such conversations infringe on the principles governing an individual's autonomy. However, because they are aware that elevated alcohol intake may have a negative impact on health and well-being, they also express a need for guidelines how they in a better and open minded way can discuss the use and elevated use of alcohol with the patients they care for.

Resisting ageism through lifelong learning. Mature students' counter-narratives to the construction of aging as decline.

This study aims to investigate the narratives of some "mature" students who are challenging the widely-shared view that studying, and learning new things, is a prerogative of young people. Twenty-five narrative interviews were conducted with older people enrolled at the University of Padua, Italy, to shed light on the motives, values, self-image, and personal solutions that supported their decision to resume and successfully pursue a path of studies at a "non-canonical" age. Starting from perspectives that emphasize the social dimension of meaning-making activity, we explore the counter-narratives functional to the deconstruction of "age prejudice". The results that emerge from a thematic and structural narrative analysis show some common themes and three different counter-narratives through which respondents try to challenge the idea that they are too old to study. The paper ends with some considerations on the degree of efficacy with which these counter-narratives can resist age prejudice, identifying cases in which they favor change on a personal, social, or cultural level.

The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study.

Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person's understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective-incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women's perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals' understandings of health and illness, and emphasizing the role of critical HL.

"An Active, Productive Life": Narratives of, and Through, Participation in Public and Patient Involvement in Health Research.

Public and patient involvement (PPI)-engaging the public in designing and delivering research-is increasingly expected in health research, reflecting recognition of the value of "lay" knowledge of illness and/or caring for informing research. Despite increased understanding of PPI experiences within the research process, little attention has been paid to the meaning of PPI in other areas of contributors' lives, and its value as a broader social practice. We conducted repeated narrative interviews with five experienced PPI contributors from the United Kingdom to explore how meaning is constructed through narratives of PPI in relation to their broader "life-worlds." Narratives were extremely varied, constructing identities and meanings around PPI in relation to family and social life, career and employment, financial status, and wider social agendas, as well as health. This emphasizes the importance of recognizing PPI as a social practice with diverse meaning and value beyond health research.

Silent voices: Transition experiences of family members caring for relatives with dementia.

Worldwide 46.8 million persons are living with dementia and many are requiring assistance with performing daily living or instrumental functions. It is often the task of family members to provide care for their relatives with dementia. However, they are often the silent, unseen and unacknowledged figures in the lives of people living with dementia. In 2015, we used a phenomenological design utilising visual participatory methods in the form of collages and interviews to explore and describe the transition experiences of eight family members (seven females and one male) living in a South African city regarding how they became caregivers of their relatives with dementia. They often entered their caregiving roles unexpectedly, often not having much choice regarding whether or not to take on the caregiving role. Family members caring for relatives with dementia have unique support needs as they transition into the caregiving role.

Negotiating the Practical Meaning of Recovery in a Process of Implementation : An Empirical Investigation of How a Participatory-Inspired Research Approach to Implementation Might Facilitate a More Recovery-Oriented Practice: The Case of RENEW-DK.

As implementation of recovery-oriented practices has proven difficult, this study investigates whether a participatory-inspired approach to implementing and adjusting a recovery-oriented model, RENEW-DK, might facilitate a more recovery-oriented practice among the professionals in public sector services. Ten narrative interviews with professionals was analyzed from a Science and Technology Studies perspective, and special attention was devoted to the concepts of distortion and stigmatization. Despite a one-year participatory process of model adjustment and implementation, professionals experienced RENEW-DK as a distortion and thus shaped their practice of RENEW-DK according to organizational requirements and professional beliefs instead of making their practice more recovery-oriented. The study calls attention to the need to acknowledge contradictions between intentions in general models and values in specific organizations with local norms and practices.

Returning to work after sickness absence due to common mental disorders: study design and baseline findings from an 18 months mixed methods follow-up study in Germany.

BACKGROUND: With nearly 30 % of the general population experiencing one mental disorder in 12 months, common mental disorders (CMDs) are highly prevalent in Germany and mainly affect the workforce. Therefore, the processes of successfully returning to work (RTW) and achieving a sustainable RTW (SRTW) are important not only for recovery but the prevention of negative consequences like job loss or disability retirement. While factors influencing and predicting the time until RTW are well-investigated in other countries, research on determinants of RTW and SRTW has received little attention in Germany. Consequently, this study aims to investigate the RTW and SRTW processes due to CMDs from the employees´ perspective in Germany. METHODS: This prospective cohort study uses a convergent parallel mixed methods design with a quantitative sample and qualitative sub-sample. Two hundred eighty-six participants of the quantitative study and a sub-sample of 32 participants of the qualitative study were included. The primary outcome of the quantitative study is the time until RTW and full RTW. The secondary outcome is the sustainability of RTW. The following measures will be used to cover work-, RTW- and health-related factors: working time, duration of sickness absences, functional ability, work ability, RTW self-efficacy, social support, work-privacy conflict, job satisfaction, job crafting and depressive symptoms. Quantitative and qualitative data will be integrated at the end. DISCUSSION: The paper provides an overview on study design, recruitment, sample characteristics and baseline findings of an 18 months mixed methods follow-up study in Germany. This study will provide evidence of (S)RTW processes and its influencing factors due to CMDs in Germany and therefore contribute to further improvement of its (S)RTW practices. TRIAL REGISTRATION: German Clinical Trials Register (ID: DRKS00010903, July 28, 2017, retrospectively registered).

Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol.

INTRODUCTION: Primary sclerosing cholangitis (PSC) is a rare and chronic disease characterised by inflammation and fibrosis of the liver's bile ducts. There is no known cause or cure for the illness, which often progresses to end-stage liver disease requiring liver transplantation. Symptoms of PSC can be very burdensome on those living with the illness, leading to restrictions in daily living, as well as a greater risk of colorectal and biliary tract cancers. Limited voices from lived experience suggest that living with PSC can cause considerable psychological distress. This study, therefore, aims to explore how the illness impacts the psychological well-being of those living with the illness, and those supporting them. It also aims to create a personalised psychological intervention to support all groups. METHODS AND ANALYSIS: This project will take a layered qualitative approach to understanding the ways in which people experience living with PSC within their day-to-day lives. There will be two stages to this study, which will pilot a unique methodological process using online resources. The first stage will consist of asynchronous virtual focus groups (AVFGs) with those living with PSC and those who provide support for those diagnosed with PSC, and narrative interviews with both groups and health professionals. Both the AVFGs and the narrative interviews will be analysed using thematic narrative analysis. The second stage will comprise a roundtable discussion where the researchers and health professionals will devise a personalised psychological intervention to help to support those living with PSC and their supporters. The study duration is expected to be 18 months. ETHICS AND DISSEMINATION: The proposed study has been approved by the UK Health Research Authority and London-Queen Square Research Ethics Committee as application 18/LO/1075. Results from the AVFGs and the narrative interviews will be submitted for peer-reviewed publication. The findings of the study will also be presented nationally to PSC and medical communities, and a summary of the findings will be shared with participants.

Citizens' and Farmers' Framing of 'Positive Animal Welfare' and the Implications for Framing Positive Welfare in Communication.

Human perception can depend on how an individual frames information in thought and how information is framed in communication. For example, framing something positively, instead of negatively, can change an individual's response. This is of relevance to 'positive animal welfare', which places greater emphasis on farm animals being provided with opportunities for positive experiences. However, little is known about how this framing of animal welfare may influence the perception of key animal welfare stakeholders. Through a qualitative interview study with farmers and citizens, undertaken in Scotland, UK, this paper explores what positive animal welfare evokes to these key welfare stakeholders and highlights the implications of such internal frames for effectively communicating positive welfare in society. Results indicate that citizens make sense of positive welfare by contrasting positive and negative aspects of welfare, and thus frame it as animals having 'positive experiences' or being 'free from negative experiences'. Farmers draw from their existing frames of animal welfare to frame positive welfare as 'good husbandry', 'proactive welfare improvement' or the 'animal's point of view'. Implications of such internal frames (e.g., the triggering of 'negative welfare' associations by the word 'positive') for the effective communication of positive welfare are also presented.

Retrospective Accounts of the Process of Using and Discontinuing Psychiatric Medication.

Refusal to take psychiatric medication as prescribed is often considered negative, harmful, and even reflective of a sign of one's illness. However, recent research from diverse sources has challenged this axiom. The current study investigated the reasons, processes, experiences, and perceived impacts of medication discontinuation. The study was carried out using the narrative approach to life stories method. Participants were 12 women and 9 men who had discontinued their prescribed medication following psychiatric hospitalization. Four main themes were revealed in the data analysis: (a) the experience with medication, (b) the process of discontinuing medication, (c) elements that helped achieve successful medication discontinuation, and (d) the perceived impact of medication discontinuation. Our findings challenge the widespread notion that discontinuing psychiatric medication is necessarily negative and suggest that, for some, it is a legitimate and meaningful life choice.