Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients.

BACKGROUND: Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions. CONTEXT: The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death. METHODS: Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life. RESULTS: Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase. SIGNIFICANCE OF RESULTS: Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.

Guardianship patient characteristics and outcomes in geriatric social work practice: Australian context.

This study explored the patient characteristics and outcomes in relation to guardianship in a large-scale sub-acute Australian hospital. Fifteen patients who appointed a guardian at The Kingston Center, Monash Health, participated through exploratory data collection and analysis utilizing a de-identifiable template. The findings revealed both diverse and complex patient characteristics, and ethical dilemmas in patient outcomes for social workers. Patient outcomes post-guardianship appointment and discharge highlighted a negative impact from long length of stay and the iatrogenic impact on patient wellbeing in hospital. The study reflected a disparity between patients' discharge goals and their outcomes indicating significant ethical dilemmas and complexities for social workers in ensuring rights to autonomy and responsibility for safety are balanced.

Sitting with silence: hospital social work interventions for dying patients and their Families.

The recent controversy around the hospital end of life care has highlighted the vulnerability of dying patients and their families. However, little is known about how social workers provide support and intervention around the end of life in the hospital. Eight hospital social workers provided qualitative descriptions of their clinical practice for adult patients and their families. Highlighting a theoretical orientation towards a person-in-environment approach, social workers develop unique interventions to contribute to multidisciplinary care. Findings emphasize the need to prepare social work students and clinicians for the reality of working with end of life issues.

Being pragmatic about healthcare complexity: our experiences applying complexity theory and pragmatism to health services research.

BACKGROUND: The healthcare system has proved a challenging environment for innovation, especially in the area of health services management and research. This is often attributed to the complexity of the healthcare sector, characterized by intersecting biological, social and political systems spread across geographically disparate areas. To help make sense of this complexity, researchers are turning towards new methods and frameworks, including simulation modeling and complexity theory. DISCUSSION: Herein, we describe our experiences implementing and evaluating a health services innovation in the form of simulation modeling. We explore the strengths and limitations of complexity theory in evaluating health service interventions, using our experiences as examples. We then argue for the potential of pragmatism as an epistemic foundation for the methodological pluralism currently found in complexity research. We discuss the similarities between complexity theory and pragmatism, and close by revisiting our experiences putting pragmatic complexity theory into practice. CONCLUSION: We found the commonalities between pragmatism and complexity theory to be striking. These included a sensitivity to research context, a focus on applied research, and the valuing of different forms of knowledge. We found that, in practice, a pragmatic complexity theory approach provided more flexibility to respond to the rapidly changing context of health services implementation and evaluation. However, this approach requires a redefinition of implementation success, away from pre-determined outcomes and process fidelity, to one that embraces the continual learning, evolution, and emergence that characterized our project.

Social Isolation, Physical Capacity, and Physical Activity in Older Community-Dwelling Adults Post-Hospitalization.

This paper investigated the potential relationships between physical capacity and physical activity (recreational and household) with social isolation amongst older adults. Data for hospitalized Victorians (n = 311) were analyzed in univariable, multivariable and latent growth curve analyses over six months. Measures included items from the Friendship Scale, Lubben Social Network Scale (LSNS-6), Australian Survey of Disability, Ageing and Carers Household (SDAC), and Phone-FITT. Over six months, improvements in physical capacity were related to reduced social isolation (-0.65, CI = -1.21, -0.09). Increased total (0.02, CI = 0.004, 0.04) and household-based physical activity (0.03, CI = 0.001, 0.06) were related to contact with more relatives. Higher baseline household-based physical activity was related to contact with fewer relatives (-0.01, CI = -0.02, -0.001). Along with physical capacity and activity, household-based physical activity appears to be strongly related to social isolation. Further research is required to determine the direction of relationships, to provide evidence for effective interventions.

Impact of disinvestment from weekend allied health services across acute medical and surgical wards: 2 stepped-wedge cluster randomised controlled trials.

BACKGROUND: Disinvestment (removal, reduction, or reallocation) of routinely provided health services can be difficult when there is little published evidence examining whether the services are effective or not. Evidence is required to understand if removing these services produces outcomes that are inferior to keeping such services in place. However, organisational imperatives, such as budget cuts, may force healthcare providers to disinvest from these services before the required evidence becomes available. There are presently no experimental studies examining the effectiveness of allied health services (e.g., physical therapy, occupational therapy, and social work) provided on weekends across acute medical and surgical hospital wards, despite these services being routinely provided internationally. The aim of this study was to understand the impact of removing weekend allied health services from acute medical and surgical wards using a disinvestment-specific non-inferiority research design. METHODS AND FINDINGS: We conducted 2 stepped-wedge cluster randomised controlled trials between 1 February 2014 and 30 April 2015 among patients on 12 acute medical or surgical hospital wards spread across 2 hospitals. The hospitals involved were 2 metropolitan teaching hospitals in Melbourne, Australia. Data from n = 14,834 patients were collected for inclusion in Trial 1, and n = 12,674 in Trial 2. Trial 1 was a disinvestment-specific non-inferiority stepped-wedge trial where the 'current' weekend allied health service was incrementally removed from participating wards each calendar month, in a random order, while Trial 2 used a conventional non-inferiority stepped-wedge design, where a 'newly developed' service was incrementally reinstated on the same wards as in Trial 1. Primary outcome measures were patient length of stay (proportion staying longer than expected and mean length of stay), the proportion of patients experiencing any adverse event, and the proportion with an unplanned readmission within 28 days of discharge. The 'no weekend allied health service' condition was considered to be not inferior if the 95% CIs of the differences between this condition and the condition with weekend allied health service delivery were below a 2% increase in the proportion of patients who stayed in hospital longer than expected, a 2% increase in the proportion who had an unplanned readmission within 28 days, a 2% increase in the proportion who had any adverse event, and a 1-day increase in the mean length of stay. The current weekend allied health service included physical therapy, occupational therapy, speech therapy, dietetics, social work, and allied health assistant services in line with usual care at the participating sites. The newly developed weekend allied health service allowed managers at each site to reprioritise tasks being performed and the balance of hours provided by each professional group and on which days they were provided. Analyses conducted on an intention-to-treat basis demonstrated that there was no estimated effect size difference between groups in the proportion of patients staying longer than expected (weekend versus no weekend; estimated effect size difference [95% CI], p-value) in Trial 1 (0.40 versus 0.38; estimated effect size difference 0.01 [-0.01 to 0.04], p = 0.31, CI was both above and below non-inferiority margin), but the proportion staying longer than expected was greater with the newly developed service compared to its no weekend service control condition (0.39 versus 0.40; estimated effect size difference 0.02 [0.01 to 0.04], p = 0.04, CI was completely below non-inferiority margin) in Trial 2. Trial 1 and 2 findings were discordant for the mean length of stay outcome (Trial 1: 5.5 versus 6.3 days; estimated effect size difference 1.3 days [0.9 to 1.8], p < 0.001, CI was both above and below non-inferiority margin; Trial 2: 5.9 versus 5.0 days; estimated effect size difference -1.6 days [-2.0 to -1.1], p < 0.001, CI was completely below non-inferiority margin). There was no difference between conditions for the proportion who had an unplanned readmission within 28 days in either trial (Trial 1: 0.01 [-0.01 to 0.03], p = 0.18, CI was both above and below non-inferiority margin; Trial 2: -0.01 [-0.02 to 0.01], p = 0.62, CI completely below non-inferiority margin). There was no difference between conditions in the proportion of patients who experienced any adverse event in Trial 1 (0.01 [-0.01 to 0.03], p = 0.33, CI was both above and below non-inferiority margin), but a lower proportion of patients had an adverse event in Trial 2 when exposed to the no weekend allied health condition (-0.03 [-0.05 to -0.004], p = 0.02, CI completely below non-inferiority margin). Limitations of this research were that 1 of the trial wards was closed by the healthcare provider after Trial 1 and could not be included in Trial 2, and that both withdrawing the current weekend allied health service model and installing a new one may have led to an accommodation period for staff to adapt to the new service settings. Stepped-wedge trials are potentially susceptible to bias from naturally occurring change over time at the service level; however, this was adjusted for in our analyses. CONCLUSIONS: In Trial 1, criteria to say that the no weekend allied health condition was non-inferior to current weekend allied health condition were not met, while neither the no weekend nor current weekend allied health condition demonstrated superiority. In Trial 2, the no weekend allied health condition was non-inferior to the newly developed weekend allied health condition across all primary outcomes, and superior for the outcomes proportion of patients staying longer than expected, proportion experiencing any adverse event, and mean length of stay. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12613001231730 and ACTRN12613001361796.

Understanding temporal relationships between depression, falls, and physical activity in a cohort of post-hospitalized older adults - a breakthrough or a conundrum?

BACKGROUND: Clinical depression affects approximately 15% of community-dwelling older adults, of which half of these cases present in later life. Falls and depressive symptoms are thought to co-exist, while physical activity may protect an older adult from developing depressive symptoms. This study investigates the temporal relationships between depressive symptoms, falls, and participation in physical activities amongst older adults recently discharged following extended hospitalization. METHODS: A prospective cohort study in which 311 older adults surveyed prior to hospital discharge were assessed monthly post-discharge for six months. N = 218 completed the six-month follow-up. Participants were recruited from hospitals in Melbourne, Australia. The survey instrument used was designed based on Fiske's behavioral model depicting onset and maintenance of depression. The baseline survey collected data on self-reported falls, physical activity levels, and depressive symptoms. The monthly follow-up surveys repeated measurement of these outcomes. RESULTS: At any assessment point, falls were positively associated with depressive symptoms; depressive symptoms were negatively associated with physical activity levels; and, physical activity levels were negatively associated with falls. When compared with data in the subsequent assessment point, depressive symptoms were positively associated with falls reported over the next month (unadjusted OR: 1.20 (1.12, 1.28)), and physical activity levels were negatively associated with falls reported over the next month (unadjusted OR: 0.97 (0.96, 0.99) household and recreational), both indicating a temporal relationship. CONCLUSION: Falls, physical activity, and depressive symptoms were inter-associated, and depressive symptoms and low physical activity levels preceded falls. Clear strategies for management of these interconnected problems remain elusive.

What makes weekend allied health services effective and cost-effective (or not) in acute medical and surgical wards? Perceptions of medical, nursing, and allied health workers.

BACKGROUND: There is strong public support for acute hospital services to move to genuine 7-day models, including access to multidisciplinary team assessment. This study aimed to identify factors that might enable an effective and cost-effective weekend allied health services on acute hospital wards. METHODS: This qualitative study included 22 focus groups within acute wards with a weekend allied health service and 11 telephone interviews with weekend service providers. Data were collected from 210 hospital team members, including 17 medical, 97 nursing, and 96 allied health professionals from two Australian tertiary public hospitals. All were recorded and imported into nVivo 10 for analysis. Thematic analysis methods were used to develop a coding framework from the data and to identify emerging themes. RESULTS: Key themes identified were separated into issues perceived as being enablers or barriers to the effective or cost-effective delivery of weekend allied health services. Perceived enablers of effectiveness and cost-effectiveness included prioritizing interventions that prevent decline, the right person delivering the right service, improved access to the patient's family, and ability to impact patient flow. Perceived barriers were employment of inexperienced weekend staff, insufficient investment to see tangible benefit, inefficiencies related to double-handling, unnecessary interventions and/or inappropriate referrals, and difficulty recruiting and retaining skilled staff. CONCLUSIONS: Suggestions for ensuring effective and cost effective weekend allied health care models include minimization of task duplication and targeting interventions so that the right patients receive the right interventions at the right time. Further research into the effectiveness and cost effectiveness of these services should factor in hidden costs, including those associated with managing the service.

New ways of seeing: Health social work leadership and research capacity building.

Building research capacity amongst social work practitioners is critically important for leaders in the social work profession. To reverse an apparent reluctance to use evidence and engage in research, strong social work leadership in practice organisations is needed. The literature on leadership in health social work is relatively silent regarding research capacity building as a leadership attribute but it is argued in this paper that leadership is crucial. A programme of research capacity building and its outcomes in a health social work department is described, identifying key principles guiding its establishment and tasks undertaken. A transformational leadership style characterised this approach to research capacity building which delivered benefits to the staff and the service.

Health social workers sources of knowledge for decision making in practice.

This article presents findings from research examining knowledge social workers in a health network in Victoria, Australia identified as informing their decision-making. Data for 13 patients, and in-depth interviews with six social workers who worked with these patients, were studied. A thematic analysis of interviews revealed that participants identified reliance on past experience and contextual/situational information as underpinning their decisions, demonstrating their commitment to person-in-environment perspectives. However, despite the availability of a repository of empirical evidence, no respondent made use of this. This study provided insight into health practitioners' sources of knowledge, highlighting gaps and areas for further exploration.

What factors influence older adults to discuss falls with their health-care providers?

OBJECTIVE: To identify from the older adults' perspective, the factors associated with discussion about falls with their general practitioners and other health professionals and the factors associated with initiation of these discussions. We explored the content of and barriers to discussion about falls. METHODS: A prospective cohort study where a baseline cross-sectional survey was followed by a survey 1 year later. Survey domains were drawn from constructs of behavioural change models. Data from 245 older community dwellers in Victoria, Australia, in the follow-up survey were used for this study. Survey format consisted of yes and no responses, Likert scale and open/closed-ended responses. RESULTS: Few older adults talked with and initiated a talk with their health-care providers about falls in the follow-up period. Multiple regression showed anxiety or depression [OR = 2.78, 95% CI (1.21-6.41)], chronic medical conditions such as diabetes [OR = 2.71, 95% CI (1.19-6.17)] and having a self-reported fall in the last 12 months [OR = 4.26, 95% CI (2.16-8.41)] were associated with discussion of falls with general practitioners. Higher perception of risk of sustaining a serious injury from falling [OR = 1.49 (1.03-2.13)] was associated with discussion about falls with other health professionals. Participants discussed various topics of falls with their health-care providers. Different barriers to discussion about falls were identified. CONCLUSION: Health-care providers should routinely discuss falls prevention with older adults. Dissemination of evidence-based advice and followed up with referral during consultations, particularly in general practitioners could advance falls prevention practice. The results could help to develop a conceptual framework to predict the likelihood of falls discussion.

Why do hospitalized older adults take risks that may lead to falls?

BACKGROUND: The behaviour of hospitalized older adults can contribute to falls, a common adverse event during and after hospitalization. OBJECTIVE: To understand why older adults take risks that may lead to falls in the hospital setting and in the transition period following discharge home. DESIGN: Qualitative research. SETTING AND PARTICIPANTS: Hospital patients from inpatient medical and rehabilitation wards (n = 16), their informal caregivers (n = 8), and health professionals (n = 33) recruited from Southern Health hospital facilities, Victoria, Australia. MAIN VARIABLES STUDIED: Perceived motivations for, and factors contributing to risk taking that may lead to falls. MAIN OUTCOME MEASURES: Semi-structured, in depth interviews and focus groups were used to generate qualitative data. Interviews were conducted both 2 weeks post-hospitalization and 3 months post-hospitalization. RESULTS: Risk taking was classified as; (i) enforced (ii) voluntary and informed and (iii) voluntary and mal informed. Five key factors that influence risk taking behaviour were (i) risk compensation ability of the older adult, (ii) willingness to ask for help, (iii) older adult desire to test their physical boundaries, (iv) communication failure between and within older adults, informal care givers and health professionals and (v) delayed provision of help. DISCUSSION AND CONCLUSION: Tension exists between taking risks as a part of rehabilitation and the effect it has on likelihood of falling. Health professionals and caregivers played a central role in mitigating unnecessary risk taking, though some older adults appear more likely to take risks than others by virtue of their attitudes.

Investigation of older adults' participation in exercises following completion of a state-wide survey targeting evidence-based falls prevention strategies.

This paper examines whether involvement in an observational study may prompt participants to change their exercise behaviors. Data were collected from 394 older community dwellers in Victoria, Australia using a baseline survey, and 245 of these participated in a follow-up survey one year later. Survey domains were drawn from constructs of relevant health behavior models. Results showed that the proportion of respondents who were currently participating in exercises to prevent falls at follow-up was 12% higher than at baseline (Wilcoxon p value < .001). Twenty-nine percent reported they had changed their perceptions about falls and their risk of falls, with comments focused on threat appraisal. Forty-four percent reported having taken strategies to reduce their risk of falling, with comments based on implementation of different preventive strategies. Respondents who held favorable views toward exercises for the prevention of falls appear to change their behaviors that might address falls when participating in observational studies.

"A quiet still voice that just touches": music's relevance for adults living with life-threatening cancer diagnoses.

PURPOSE: Music has historically aided health and loss-adaptation, however, cancer patients' experience of music for self-care is not well understood. This study examines adult cancer patients' views about music's role before and after diagnosis. METHODS: Constructivist approach, with grounded theory informed design using convenience, snowball and theoretical sampling. Patients from Australian metropolitan cancer and hospice settings completed demographic questionnaires and participated in semi-structured interviews. Qualitative inter-rater reliability was applied. RESULTS: Fifty-two patients reported comparable time spent experiencing music pre-post diagnosis. Music may remain incidental; however, many patients adapt music usage to ameliorate cancer's aversive effects. Patients often draw from their musical lives and explore unfamiliar music to: remain connected with pre-illness identities; strengthen capacity for enduring treatment, ongoing survival (even when knowing "you're going to die"), or facing death; reframe upended worlds; and live enriched lives. Patients can ascribe human or physical properties to music when describing its transformative effects. Familiar lyrics maybe reinterpreted, and patients' intensified emotional reactions to music can reflect their threatened mortality. Sometimes music becomes inaccessible, elusive, and/or intensifies distress and is avoided. Families', friends' and professionals' recognition of patients' altered musical lives and music-based suggestions can extend patients' use of music for self-care. CONCLUSION: Health professionals can support patients by inquiring about their music behaviours and recognising that altered music usage may signify vulnerability. Although commonly recommended, hospital concerts and music broadcasts need sensitive delivery. Patients' preferred music should be available in diagnostic, treatment and palliative settings because it can promote endurance and life enrichment.

'They will tell me if there is a problem': limited discussion between health professionals, older adults and their caregivers on falls prevention during and after hospitalization.

The objectives of this study were to describe the sources of falls prevention information provided to older adults during and after hospitalization, identify and explore reasons why discussion about falls prevention may not take place. Six participant groups were interviewed using semi-structured interviews or focus groups: (i) older patients (n = 16); (ii) caregivers (n = 8); (iii) allied health and nursing professionals (n = 33); (iv) doctors from acute wards (n = 8); (v) doctors from subacute wards (n = 10) and (vi) general practitioners (n = 9). Participants were recruited from three Australian hospitals that provided acute and subacute in-patient services to the older adults. General practitioners were recruited from the community of Melbourne. Findings showed provision of falls prevention information was dependent on setting of the ward and which health professionals the older adult encountered during and after hospitalization. Medical practitioners were reactive in providing information, whereas older adults and their caregivers were passive in seeking falls prevention information. Several barriers in information provision and information seeking were identified. There is great potential to improve the consistency of falls prevention information provision to older adults during hospitalization and in preparation for discharge to assist with prevention of falls in this high risk period.

Complex patients: social workers' perceptions of complexity in health and rehabilitation services.

We report on a qualitative study exploring health social workers' understanding of complexity in relation to inpatients in subacute wards at three sites across a large health network in Melbourne, Australia. Findings indicate that social workers' understanding of complexity refers to five interrelated themes: multiple competing demands; uncertainty; patient and family characteristics; pending breakdown; systems challenges. Social workers with less practice experience report that complex clients present more challenges than do social workers with greater experience. Implications of these findings for advancing practitioners' capacities in working with complex patients are discussed, as are the limitations of the study.

Paradoxes, contradictions, and dilemmas: Reflections on the contours of a pandemic and its implications for social work education.

Summary: This is a reflective and theoretical article that discusses the impact of COVID-19 on social work practice. The pandemic, which made its presence felt globally from early 2020, continues to have ongoing and significant consequences for lives, livelihoods, public health, and personal freedoms. We argue that, while its specific contours are yet to be comprehensively researched, let alone the final outcomes understood, the pandemic has presented opportunities to develop new ways of thinking about social work and social work education. Findings: Through a discussion of relevant literature, including a recent work of fiction, we contend that social workers have been able to adapt, to some extent, to the pandemic but in reactive rather than proactive ways. The biopsychosocial and person-in-environment perspectives that characterize social work education, theory, and practice might be greatly enhanced by the introduction of complexity theory in terms of developing new thinking about the theoretical basis of social work, enabling new questions and new strategies to emerge to strengthen social work responses to the challenges posed by COVID-19. Applications: Arising from this theoretical article, there are many implications for introducing complexity theory within social work education programs. Complexity theory can provide a conceptual frame fit-for-purpose for social work pandemic and post-pandemic theory and practice.

Bereaved families' experiences of end-of-life decision making for general medicine patients.

BACKGROUND: Family involvement in decision making for hospitalised patients is associated with improved end-of-life care. Yet, these discussions can be challenging for physicians and families and associated with distress, confusion and conflict. There is a need to understand how best to support families involved in decisions regarding the transition from active to palliative treatment in hospital settings. AIM: To explore bereaved families' experiences of end-of-life decision making for general medicine patients. DESIGN: A qualitative exploratory study framed by social constructionism using semistructured interviews and thematic analysis. SETTING AND PARTICIPANTS: The general medicine units of one large public hospital in Melbourne, Australia. We recruited 28 bereaved family members of patients who had received end-of-life care. FINDINGS: Patients and families depended on physicians to explain clinical complexity and treatment beneficence; however, trust in medical judgement was mediated by participant's own interpretations of clinical progress. Families sought to be respected as advocates and experienced distress if physicians disregarded their perspectives and insight concerning patient preferences. Ideally, families supported patients to express their preferences to physicians. Otherwise, families contextualised treatment decisions through their knowledge of patient's values and quality of life. Families often felt burdened by or excluded from medical decision making and experienced distress and confusion regarding their rights to request or refuse treatment. CONCLUSION: Our study highlights how families contribute to decision making to ensure end-of-life care treatments reflect patient preferences. Physicians can ease families' distress around treatment withdrawal by providing a meaningful explanation of complex clinical issues, clarifying decision-making roles and acknowledge families' desire to protect and advocate for their loved one.

Does the Theory of Planned Behaviour Explain Allied Health Professionals' Evidence-Based Practice Behaviours? A Focus Group Study.

BACKGROUND: Research suggests that allied health professionals agree with evidence-based practice (EBP); however, implementation of research findings into clinical practice is poor. Interventions aimed at improving EBP have been largely unsuccessful. Implementation science research suggests that a theory-driven approach is critical when attempting to modify behaviour of healthcare professionals. PURPOSE: To explain allied health professionals' EBP behaviours utilising the theory of planned behaviour. METHODS: Focus groups. RESULTS: Ten focus groups with a total of 49 participants were conducted and consisted of discipline-specific and multidisciplinary teams. Participants had positive attitudinal beliefs but low normative beliefs, particularly in relation to the perception that the workplace did not value engagement in EBP activities. The organisational context was a strong moderator of perceived behavioural control, more so than internal variables such as skills. An additional theme was identified and related to the sense of dissonance participants experienced due to their awareness of the knowledge-behaviour gap. CONCLUSION: This study found that allied health professionals have positive attitudes towards EBP but low normative beliefs and low perceived behavioural control. Organisation-specific factors outside the control of the participants were found to have the greatest impact on intention to participate in EBP.

Housing and Support Narratives of People Experiencing Mental Health Issues: Making My Place, My Home.

Background: Choice, control, privacy, and security are widely reported housing preferences of mental health consumers, are associated with improved well-being and greater housing satisfaction, and are important for recovery. This paper describes housing and neighborhood experiences from a larger qualitative study that sought to learn with people experiencing mental health issues about their everyday lives in an Australian urban community. Methods: A participatory approach to health research informed this study. A participatory reference group, including four people with consumer perspective knowledge and experience of mental health issues and four mental health practitioners with service provider and researcher perspectives, worked together to design and implement this study over a 4-year period. Thirty-nine participants were recruited, including 18 women and 21 men living in metropolitan Melbourne and receiving community mental health care for ongoing mental health issues related mainly to either psychotic or affective disorders. Participants each took part in one to three interviews or a focus group. The data were transcribed and analyzed using narrative and thematic analytic strategies, underpinned by reflective discussions with the participatory reference group. Findings: Participants' experiences of their housing and neighborhoods emphasized qualities that either contributed to or challenged their sense of being "at home." Identifying with a place as home was transformative, especially when supported by friendly neighborhood interactions, safety, and accessibility of local amenities. Unsatisfactory housing situations and limited income worked against participants' efforts to regain a sense of well-being and improve their situations. When being home was challenging, strategies used to counteract this included getting a pet and getting out as a means of resisting isolation at home. Differing views and ways of using the available support workers were described, suggesting tensions between seeking to be self-sufficient and valuing support. Conclusions: Social housing locations and housing-related support should explicitly attend to safety and security concerns. Collaborative care planning and outreach support should attend to supports for navigating issues with neighbors, housing, harnessing natural supports, and opportunities for being in others' company, as well as recognizing the importance of pets in people's lives. Understanding the strategies that mental health consumers find helpful in creating a sense of being at home, and the role of "place" in recovery merit further consideration in research and practice.