Practice Leadership at the Front Line in Supporting People with Intellectual Disabilities and Challenging Behaviour: A Qualitative Study of Registered Managers of Community-based, Staffed Group homes.

BACKGROUND: The front-line management role in services for people with intellectual disabilities remains rather under-researched. The aim of this study was to examine the experiences of registered managers in services for adults with intellectual disability who exhibit challenging behaviour. METHOD: Interviews, primarily focussed upon staff practice, were conducted with 19 managers of staffed group homes in SE England. Transcripts were analysed using interpretive phenomenological analysis. RESULTS: Five groups of themes emerged: monitoring staff performance, supporting new ways of working, shaping staff performance, influence of external and employing agencies, and importance of participants' personal values and experiences. CONCLUSION: The themes identified contribute to a conceptual framework for thinking about front-line management/practice leadership. The limitations, and potential implications, of the findings are discussed.

Relocating people with intellectual disability to new accommodation and support settings: Contrasts between personalized arrangements and group home placements.

Internationally the relocation of people with intellectual disability from institutions has brought significant gains to their quality of life. This study contrasted three groups of persons in Ireland who moved either to personalized arrangements (n = 29) or to community group homes (n = 31) with those who remained in congregated settings awaiting relocation (n = 29). Persons moving to rented accommodation with personalized support tended to be younger and had fewer support needs than those in group homes. They had greater control and choice in their lives, more community engagement and increased personal relationships compared to residents in group homes but those remaining in congregated settings fared worse of all. However, average staff costs were significantly higher in the latter settings. The implications for the future provision of group living arrangements are discussed along with the need for further longitudinal research to assess the sustained impact of personalized arrangements and their funding.

Stories of rediscovering agency: home-based occupational therapy for people with severe psychiatric disability.

As part of a larger study, we offered Everyday Life Rehabilitation (ELR) as a model for integrated occupational therapy in sheltered or supported housing facilities, to enable meaningful daily occupations for people with psychiatric disabilities. Our aim with this study was to understand how participants made sense of their occupational transformations in the context of their everyday life and life history. We carried out qualitative interviews and field observations with 16 participants with psychosis-related disorders. We used narrative analysis and disclosed stories of "rediscovering agency," referring to occupational and identity transformations. A parallel outcome study has shown positive results for participants, and by using narrative inquiry we contribute with a deeper understanding of the meaning making of their transformations and mechanisms of the intervention; i.e., hope, extended value of reaching goals, reentering the majority world, transparency of process, and attunement to the individual. The findings support the use of the ELR intervention.

[Small-scale, homelike care environments for people with dementia: effects on residents, family caregivers and nursing staff]. / Kleinschalig wonen voor ouderen met dementie: de invloed op bewoners, mantelzorgers en medewerkers.

Institutional dementia care is increasingly directed towards small-scale and homelike care environments, in The Netherlands as well as abroad. In these facilities, a small number of residents, usually six to eight, live together, and normal daily household activities and social participation are emphasized. In a quasi-experimental study, we studied the effects of small-scale, homelike care environments on residents (n = 259), family caregivers (n = 206) and nursing staff (n = 305). We compared two types of institutional nursing care during a 1 year period (baseline assessment and follow-up measurements at 6 and 12 months): (28) small-scale, homelike care environments and (21) psychogeriatric wards in traditional nursing homes. A matching procedure was applied to increase comparability of residents at baseline regarding functional status and cognition. This study was unable to demonstrate convincing overall effects of small-scale, homelike care facilities. On our primary outcome measures, such as quality of life and behaviour of residents and job satisfaction and motivation of nursing staff, no differences were found with traditional nursing homes. We conclude that small-scale, homelike care environments are not necessarily a better care environment than regular nursing homes and other types of living arrangements should be considered carefully. This provides opportunities for residents and their family caregivers to make a choice which care facility suits their wishes and beliefs best.

[Shared-housing arrangements for care-dependent people in Germany. A literature overview of structures, outcomes and quality management]. / Ambulant betreute Wohngemeinschaften für pflegebedürftige Menschen in Deutschland. Eine Literaturübersicht zu Strukturen, Versorgungsoutcomes und Qualitätsmangagement.

A main factor for the development of shared-housing arrangements (SHA) was the wish of more self-determination in old age. Since January 2013 SHA is government-funded through the "Pflege-Neuausrichtungs-Gesetz" (PNG). Yet, an overview of the situation of SHA in Germany is not available. Therefore, a systematic literature search (databases CareLit, CINAHL, GeroLit, PubMed) was conducted in order to identify publications regarding resident- and care-specific characteristics, resident-related health outcomes and setting-specific quality management systems. The currently available knowledge in these fields is not exhaustive and further research is needed. The results indicate that care in SHA is not more efficient regarding residents' quality of life than in institutional care settings. Valid studies regarding the quality of care provision in SHA and conceptual basics concerning quality assessment are widely lacking. Thus, the goal of expanding SHA within the framework of the PNG has to be accompanied by in-depth health services research.

Resettlement of individuals with learning disabilities into community care: a risk audit.

This article describes a risk audit carried out on the support provided for 36 people with profound learning disabilities who had been resettled from hospital care to supported housing. The risks were those factors identified in the literature as associated with deleterious effects on quality of life. The audit was carried out with a specially designed tool that covered 24 possible risks and involved a support worker familiar with the service user choosing the most appropriate statement regarding each risk. Their judgements were verified by care managers and social needs assessors. Whilst one or more risks were identified for 32 of the 36 service users, the overall result showed relatively low risks for the group as a whole with 62 incidences (7%) from a possible 864, which nevertheless highlighted several areas that needed attention. The results of the audit have led to action plans for the provision and for the individual service users for whom risks were identified.

Social defeat in recovery-oriented supported housing: moral experience, stigma, and ideological resistance.

Drawing from ethnographic observations and interview data gathered during 6 months working as a home caregiver at the Pinewood Apartments, a recovery-oriented supported housing community in Texas, I demonstrate how stigma and social defeat were moral and social processes that pervaded life for all involved, including service providers. Yet, because of the extreme power differentials that characterized tenant-staff relationships, the assault of stigma and social defeat was much more frequent, existentially intense, and morally and materially consequential for certain tenants, whose attempts at ideological resistance were delegitimized by service providers, including myself, who were backed by the authority of dominant psychiatric and moralistic discourses concerning the inherent irrationality and irresponsibility of people with severe mental illness. Nevertheless, due to the indeterminate and at times inharmonious nature of moral experience, it is not my intention to portray tenants as wholly defeated. Rather, individual tenants often exhibited defeat and resistance simultaneously.

Quality of life of residents with dementia in a group-living situation: an approach to creating small, homelike environments in traditional nursing homes in Japan.

OBJECTIVES: Group living is an approach that can create small, homelike environments in traditional nursing homes in Japan. The aim of the present study was to examine quality of life (QOL) of residents with dementia in group-living situations. METHODS: The group-living group consisted of facilities that formed residential units. Each unit had a common area and stable staff assignments. The control group consisted of facilities that did not form residential units. The quality of life instrument for Japanese elderly with dementia (QLDJ) scale was used to rate QOL by direct care workers of 616 residents with dementia from 173 facilities in the group-living group and 750 residents from 174 facilities in the control group. QOL was based on the following subscales: interacting with surroundings; expressing oneself; and experiencing minimal negative behavior. RESULTS: Multilevel regression analyses demonstrated a significantly greater QOL with respect to interacting with surroundings, expressing oneself, and experiencing minimal negative behavior for residents with dementia in the group-living group compared to the control group, as measured by the QLDJ. The total QLDJ score was also significantly higher for the group-living group. CONCLUSION: The results suggest improved QOL of residents with dementia under group-living situations. Future studies should examine the effect of group-living on QOL of residents with dementia using a cohort design, following residents longitudinally from admission.

Duty of care and autonomy: how support workers managed the tension between protecting service users from risk and promoting their independence in a specialist group home.

BACKGROUND: In the UK those paid to support adults with intellectual disabilities must manage two potentially conflicting duties that are set out in policy documents as being vital to their role: protecting service users (their duty of care) and recognising service users' autonomy. This study focuses specifically on the support of people with the genetically determined condition, Prader-Willi syndrome (PWS). Due to the behaviours associated with PWS, the support of this group of people vividly illustrates the tension between respect for autonomy and duty of care. This article explores how support workers working in a residential group home managed their competing duties of managing risk and promoting independence in practice. METHODS: An ethnographic study, comprising of qualitative observations, semi-structured interviews and documentary analysis, was undertaken to investigate the work of support workers in a UK residential group home specialising in the support of adults diagnosed with PWS. The study focused on how support workers attempted to reconcile the tension between protecting service users from the risks associated with the syndrome and acknowledging service users' autonomy by enabling independence. RESULTS: Findings demonstrate that risk was central to the structure of care delivery at the group home and support workers often adhered to standardised risk management procedures. The organisation also required support workers to promote service users' independence and many thought acknowledging service users' autonomy through the promotion of their independence was important. To manage tensions between their differing duties, some support workers deviated from standardised risk management procedures to allow service users a degree of independence. CONCLUSIONS: There is a tension between the duty of care and the duty to recognise autonomy at the level of service delivery in residential homes. Support workers attempt to manage this tension; however, further work needs to be done by both residential services and policy makers to facilitate the reconciliation of the duty of care with the duty to recognise service users' autonomy in practice.

Good care in group home living for people with dementia. Experiences of residents, family and nursing staff.

AIMS AND OBJECTIVES: To investigate experiences of residents, their family caregivers and nursing staff in group living homes for older people with dementia and their perception of the care process. BACKGROUND: Traditional nursing homes for people with dementia have several shortcomings related to depersonalisation, passivity, loss of skills and use of physical restraints. Group living homes are seen as an alternative to regular nursing homes, but experiences with this new care setting have rarely been investigated. DESIGN: The study followed a naturalistic design. Qualitative data were collected over a period of 6 months in two group living homes located in the southern part of the Netherlands. METHODS: Systematic participatory observations were carried out during daily life, care and activities in both homes. In addition, semi-structured interviews were held with residents, their family and nursing staff. These data were inductively analysed and related to Tronto's care ethical framework. RESULTS: According to all parties, group living homes create structural opportunities for individualised care and attention to the residents' personal needs. The increased attentiveness and responsiveness for residents' well-being was seen as a sign of good care and fits with the phases of caring about and receiving care of Tronto's care ethical model. However, tensions occurred relating to the phases of taking responsibility and carrying out care. Not all residents and family members want or are able to take responsibility and perform self-care. CONCLUSIONS: Group living homes create conditions for good care and stimulate attentiveness and responsiveness. Tensions in these homes may relate to the new division of responsibilities and tasks. RELEVANCE TO CLINICAL PRACTICE: Values of attention to needs and responsiveness are of high importance for nursing staff to provide good care for people with dementia in a nursing home setting.

Incapable sex: a case study.

Although it is well known that intimacy and sexual expression are an important part of being human and of healthy living, facilities such as nursing homes, adult group homes, or assisted living residences commonly struggle with knowing how to balance supporting residents who are incapable to have sexual lives with their duty to protect them from foreseeable harm. This article presents a challenging case and uses the British Columbia Supporting Sexual Health and Intimacy in Care Facility Guidelines to determine what should be done.

The effects of group living homes on older people with dementia: a comparison with traditional nursing home care.

OBJECTIVES: The aim of this study was to investigate the effects of group living homes on quality of life and functioning of people with dementia. METHODS: The study had a quasi-experimental design with a baseline measurement on admission and an effect measurement six months later. Participants were 67 residents in 19 group living homes and 97 residents in seven traditional nursing homes. DQOL and QUALIDEM measured quality of life, functional status was examined with MMSE, IDDD, RMBPC, NPI-Q and RISE from RAI. Use of psychotropic drugs and physical restraints was also assessed. Linear and logistic regression analyses analyzed the data. RESULTS: After adjustment for differences in baseline characteristics, residents of group living homes needed less help with ADL and were more socially engaged. There were no differences in behavioral problems or cognitive status. Also after adjusting, two of the 12 quality of life subscales differed between the groups. Residents of group living homes had more sense of aesthetics and had more to do. While there were no differences in prescription of psychotropic drugs, residents of group living homes had less physical restraints. CONCLUSIONS: Group living homes had some beneficial effects on its residents, but traditional nursing homes performed well as well. Possible study limitations included the baseline differences between the study groups and the use of different informants on T0 and T1. Future nursing home care may very well be a combination of the best group living care and traditional nursing home care have to offer.

Is more better? Examining whether enhanced consultation/coaching improves implementation.

It is extremely challenging to implement evidence-based interventions in community-based agencies with sufficient quality, fidelity, and intensity to produce desired changes in practice and outcomes. This is particularly difficult to do within the confines of existing service providers' time, personnel, and resource constraints. Over the past 15 years, Together Facing the Challenge (TFTC) has been developed, tested, and disseminated in an effort to address this set of issues to improve treatment foster care (TFC). Data from the initial randomized trial showed improved practice and outcomes in TFTC compared to usual TFC. These initial results came from study-led training and follow-up consultation. Subsequent dissemination activities suggested potential need for more intensive support for TFTC supervisors to produce more consistent and sustained implementation of the model. The current randomized trial extends this work by comparing the previously tested standard consultation versus enhanced consultation that incorporated more of a coaching approach. Initial results suggest that enhanced coaching/consultation was associated with improvements in the small- to medium-effect size range. Results are promising, but require additional work to more fully understand how and whether to enhance supports as agencies implement new evidence-based approaches. (PsycINFO Database Record

A participatory benchmarking strategy for describing and improving supportive housing.

This paper describes a participatory research project conducted to document good practice in the delivery of supportive housing programs. Stakeholders in a local mental health housing system in Toronto, Ontario worked collaboratively to develop 40 service benchmarks for supportive housing programs and to recommend practices for achieving these benchmarks. The findings are discussed in terms of their implications for the delivery of supportive housing and strategies for improving these programs.

End-of-life care at group homes for patients with dementia in Japan. Findings from an analysis of policy-related differences.

In Japan, the number of group homes for patients with dementia (GHs) has been increasing in recent years. A growing number of elderly people now prefer to spend their final years in group homes or other long-term care facilities, a choice that their families support. The aim of this nationwide study is to clarify the current end-of-life care policies and practices of GHs. The subjects were 3701 managing directors of GHs. Data were collected through mailed, anonymous, self-reported questionnaires in 2003. The content of the questionnaires included: (1) general characteristics of the GH, (2) end-of-life care policies and experiences, (3) available end-of-life care services at the GH, (4) staff education concerning end-of-life care, and (5) types of information provided to users and families. The response rate was 45.6%. Many GHs had implemented progressive policies for end-of-life care. GHs with progressive policies for end-of-life care were found to have different backgrounds than those with regressive policies. Only a few GHs provided end-of-life care education for their staff. GHs with progressive policies for end-of-life care tended to have the following characteristics: availability of medical intervention within and outside of the GH, self-contained physical plant and staff education about end-of-life care. Further research is needed to determine the most effective end-of-life care systems for GHs.

"It's important to be proud of the place you live in": housing problems and preferences of psychiatric survivors.

TOPIC: It is important to understand housing and mental health issues from the perspective of psychiatric survivors. This paper reports findings from a series of focus group meetings held with survivors of mental illness to address issues concerning housing preferences and housing needs. METHODS: The discussions were recorded, transcribed, and analyzed using an ethnographic method of analysis. The themes that emerged related to oppression, social networks and social supports, housing conditions, poverty and finances, and accessing services. Participants described the ongoing stigma, discrimination, and poverty that reduced their access to safe, adequate housing. FINDINGS: They preferred independent housing where supports would be available as needed. Participants described the dilemma of having to choose between the housing they wanted and the supports they needed, since supports were often contingent upon living in a less desirable housing situation. CONCLUSIONS: Nurses and other mental healthcare workers need to be aware of these issues for discharge planning, community support, and ongoing advocacy. The survivor voices need to be heard by decision-makers at various levels of government in order for housing policy to become more receptive to their realities.

Culture in Better Group Homes for People With Intellectual Disability at Severe Levels.

Building on cultural dimensions of underperforming group homes this study analyses culture in better performing services. In depth qualitative case studies were conducted in 3 better group homes using participant observation and interviews. The culture in these homes, reflected in patterns of staff practice and talk, as well as artefacts differed from that found in underperforming services. Formal power holders were undisputed leaders, their values aligned with those of other staff and the organization, responsibility for practice quality was shared enabling teamwork, staff perceived their purpose as "making the life each person wants it to be," working practices were person centered, and new ideas and outsiders were embraced. The culture was characterized as coherent, respectful, "enabling" for residents, and "motivating" for staff. Though it is unclear whether good group homes have a similar culture to better ones the insights from this study provide knowledge to guide service development and evaluation.