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Previous studies suggest that family members of people with intellectual disabilities prefer them to move to supervised living arrangements such as group homes. In Ireland, personalised arrangements are emerging, but families have had little exposure to this option. In this qualitative study, we explored the perspectives of family members following their relative’s move to personalised support options, mostly from group homes. Semi-structured interviews were conducted in 2011 with a family member of 17 people who had previously moved, with follow-up interviews held with 12 of them up to 18 months later. Thematic analysis on interview transcripts was conducted by three researchers. The family members spoke favourably of the new arrangements. A core theme of enabled independence emerged with subthemes of greater self-reliance in personal care, increased confidence, more social inclusion and gains for relatives. Reservations focussed on the need for more support hours, managing risk and loneliness.

Promoting healthier lifestyles in people with intellectual disabilities is important in order to improve health and reduce health inequalities. Few studies have explored how health-promotion interventions for people with intellectual disabilities in community-based settings are experienced. The aim of this study was to explore residents’, staff members’ and rehabilitation professionals’ experiences of how a health-promotion intervention affected the habits of people living in a group home regarding eating habits and physical activities and staffs’ ways of working. Semi-structured group interviews were conducted with five residents, six staff members and five rehabilitation professionals. The group discussions were analysed with content analysis separately for each group. Four different categories described residents’, staff members’ and rehabilitation professionals’ views respectively. It is suggested that including people with intellectual disabilities as active parties throughout the process would facilitate implementation of a health-promotion profile in community residences.

The current study examined the relationships between a personality metatrait (Stability consisting of conscientiousness, agreeableness, and neuroticism), self-esteem, and stress in an adult population of individuals with substance use disorders living in recovery homes. Adults ( N = 229) residing in 42 residential recovery settings were interviewed as part of the first wave of a longitudinal study in three sites. Standard error of the mean analysis found significant effects for several demographic variables on Stability, and Stability was significantly related both directly and indirectly to stress. These findings suggest that individual differences at entry may influence recovery home effects and may be important to developing more effective aftercare systems.

The movement of people with intellectual disabilities into the community is increasingly endorsed by public policy. Whilst staff are critical to a successful transition to the community, there is only scattered research on their role in supporting people to move. In this study, 32 staff and the 16 people with intellectual disabilities they supported to move from congregated settings to group homes or personalized living arrangements in the community were interviewed on two occasions, before (time 1) and after (time 2) the move. In congregated settings, staff steered the move to community living, they helped them to settle in community group homes and supported them to increase control over their lives in personalized community arrangements, where they support became increasingly more personalized and geared towards community participation and development of social relationships. Implications for staff training are drawn.

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.

Research suggests that many women experience some form of sexual assault in their lifetime and that women who engage in substance abuse often have a higher incidence of past sexual assault than women in the general population. Given the documented rates of sexual assault among women in recovery from substance use, it is important to explore community interventions that promote positive recovery from substance use and sexual assault. One model that promotes successful substance use recovery is the Oxford House—a democratic, self-supported substance use recovery home. Research demonstrated that living in an Oxford House provides sober social support and that this increased social support may promote the use of positive coping strategies to strengthen recovery from substance use, however; the relationship between social support and sexual assault for women is unclear. Thus, the current study examines the Oxford House model for women in recovery from substance use who have experienced sexual assault. A cross-sectional sample of women living in Oxford Houses in the United States was obtained to examine the relationship among disclosure of sexual assault, social support, and self-esteem. Results suggested that many women used Oxford House as a setting in which to disclosure prior sexual assault. Results also indicated that women who disclosed their assault experience reported higher self-esteem and social support than women who had not disclosed. Possible implications include the value of substance abuse recovery homes as a safe, supportive environment for women to address issues related to sexual assault.

Managers and caregivers in community residences for people with intellectual disabilities are expected both to promote residents’ health and to support their autonomy. The aim of this article was to explore variation in views among managers and caregivers on the role of staff in health promotion. A qualitative study was conducted using semi-structured interviews with six managers and six caregivers. The analysis used a phenomenographic approach to categorize variation in views. We identified five qualitatively different main categories of roles staff play in health promotion: the parent, the manipulator, the coach, the educator and the libertarian. In addition lifestyle-related risk factors for ill-health and barriers to a healthy lifestyle were analysed and described using qualitative content analysis. The results highlight the ethical conflict that faces staff trying to support a healthy lifestyle as well as the autonomy of the residents.

Background: The study illuminated how persons with psychiatric disabilities experienced the processes of change in a residential context. Material: Qualitative interviews with residents living in supported housing were conducted and analyzed using constant comparative analysis. Discussion: Residential conditions appear to provide a complex structure that facilitates rehabilitative interactions, in which ‘progressive tensions’ arise between opposing values, such as authentic versus artificial, and independence versus dependence, both of which are important in the process of change. Conclusions: A client-centred approach could be taken further if clients are engaged in productive discussions about challenging these ‘progressive tensions’. Awareness of the meaning of home also emerged as central.

This study aims to provide insight into the role of grandchildren as informal hospice caregivers. It presents 4 cases that highlight the challenges and perceptions of grandchildren who care for a grandparent at the end of life. A researcher met regularly with family caregivers to discuss the problems or challenges during hospice caregiving. Although each caregiver presented unique individual experiences, several themes are common among the family caregivers including fatigue, stress, guilt, and loss of the “grandchild” identity. Grandchildren caregivers often take care of 3 generations (grandparents, parents, and children) and in many cases need additional assistance to help them overcome the challenges associated with managing a household, career, family, and caregiving roles.

Seven Swedish mothers with an intellectual disability were interviewed for this exploratory study, aimed at charting such mothers’ views and experiences of their encounters with different health and social service professionals. Three distinct themes emerged from the interviews. First, the mothers experienced the interaction to be marred by lack of comprehensibility, resulting from inadequate information and their perception of not being treated properly. Second, despite their reservations about the nature of the interaction, several of the mothers also reported having received support that had strengthened their parental ability and had been experienced as empowering. Third, several of the mothers also clearly perceived themselves as subjects needing support. The results, overall, indicated that the interaction between the mother and the professionals suffered from a certain paternalism in the attitude of the latter.

Background: The quality of life experiences of the chronically mentally ill have received increased attention in outcome research lately and constitute a critical outcome of mental health. Aims: This study evaluated the perceived quality of life of the former psychiatric patients ( N = 103) who have been moved from the Psychiatric Hospital of Leros to community hostels ( N = 19) in Leros Island. In addition, the residents’ clinical and social functioning profiles were examined together with the extent of institutional practices by the staff in residents’ environment. Method: The present research is a cross-sectional study examining the impact of the transformation programmes Leros I and Leros II on the well-being of long-term psychiatric clients following the move. Results: The majority of the residents expressed high levels of satisfaction, in almost all variables of quality of life, except the variable of contact with family relations. The level of psychopathology was very low, while the majority of residents expressed low community and social skills. Finally, the staff ( N = 64) allowed in a way, the expression of autonomy in the residents’ environment. Conclusions: This study suggests that even the most chronic psychiatric population of Greece is able to give valid and reliable responses concerning the manner in which they perceive their present life.

Recent research suggests that person centred planning (PCP) can have a positive impact on the lives of people with intellectual disabilities. This article presents data from open-ended comments collected during research on the impact of PCP on the life experiences of 65 people with intellectual disabilities living in England. These comments addressed the goals set prior to and during PCP, and the main benefits of PCP for participants. The results suggest that PCP led to increased goal setting in a range of goal categories. This was reflected in the most common main benefit of PCP of `increased activities and opportunities' reported for 57 percent of participants. For 48 percent of participants, a main benefit of PCP was that they felt better in themselves, in terms of happiness or self-esteem. This must surely be the ultimate aim of those seeking to improve the quality of life of people with intellectual disabilities.

There have been considerable developments in psychosocial interventions for people with psychosis, but few studies on their application to individuals with a dual diagnosis of intellectual disability and psychosis. This includes the use of psycho-educational groups to develop a greater understanding of the impact of psychosis. Eight individuals with a dual diagnosis of mild to borderline intellectual disabilities and psychosis took part in a psycho-education group supported by a carer. Measures of knowledge and self-esteem were completed pre- and post-group. All participants completed the programme and measures of psychosis knowledge showed increases post-group. The participants were able to understand the concept of psychosis, the need for medication, the role of stress and early signs of relapse. This approach may help participants to have a better understanding of their condition and prepare them to cope better in the future.

Aim: This study assessed the goals ‘new’ long-stay clients aim to achieve by being in supported housing (SH), compared the goals stated by clients and staff, and tested whether subgroups of clients can be identified on the basis of their goals, quality of life and psychopathology. Method: Interviews were conducted with 41 clients and 39 staff of supported houses in London and Essex, UK. Descriptive, content and cluster analyses were used to analyse the results. Results: Clients’ most frequently reported goal was moving to independent housing, followed by staying healthy, and increasing living skills. A comparison of goals reported by clients and staff showed poor or no agreement between them. Cluster analyses identified two clusters of clients. Cluster A (n 1/4 23) contained those with no stated goals (or with the aim of staying healthy), lower quality of life, and more psychopathology; cluster B (n 1/4 18) included those with an aim to move to independent housing, better quality of life, and less psychopathology. Conclusion: In the UK, more staff training may be needed to identify and achieve the goals of the ‘new’ long-stay clients. For a subgroup of these clients, SH may still be a long-term care setting; while for another subgroup, new forms of rehabilitation in SH and better opportunities to leave SH may have to be developed. More conceptual and practical efforts are needed to manage the transformation of many settings from homes for life to transitional places where residents receive specific interventions.

For patients with mental health problems, de-institutionalization has meant a shift from institutional care to living in the community. However, several studies show that problems of stigmatization, loneliness and negative attitudes devalue the dignity and autonomy of these patients. The aim of this study was to gain a deeper understanding of how people with mental health problems experience living in an apartment of their own. The data collection method was focus group interviews. The constant comparative method revealed the main category ‘preserving integrity’. The subcategories were: the need for control over information, similar relationships with both friends and neighbours (symmetrical contact), and ‘My home is my castle’. Participants who lived in a group home had little or no contact with their neighbours. The participants experienced lack of acceptance and loss of autonomy when meeting people. Integrity was a necessary condition in order for them to become equal citizens, experience autonomy and dignity, and have the opportunity to develop social contacts.

A longitudinal study indicated that a single group of adults living in a large state institution (O'Berry Center in Goldsboro, North Carolina) benefited from receiving active treatment, although no control group was permitted. After five years, 59 individuals with profound mental retardation improved their skills in six general areas of dressing, grooming, eating, toileting, communication, and social interaction. After five more years of active treatment, 51 persons who had remained in the program maintained their skills in dressing, grooming, eating, and communication. Significant improvement in the use of toilet and a loss in social interaction were observed. Although the participants were 10 years older at the end of this study, their adaptive behaviors, in comparison to the date of entry, either improved or were maintained. Therefore, aging was not associated with decline in skills.

Describes a common worship pattern designed to include a Muslim woman but a pattern that could be readily adapted in many situations of community or institutional chaplaincy settings where one or more of the members or residents is not of the majority religion.

After treatment for substance abuse, whether it is in hospital-based treatment programs, therapeutic communities, or recovery homes, many patients return to former high-risk environments or stressful family situations. Returning to these settings without a network of people to support abstinence increases chances of a relapse. As a consequence, substance abuse recidivism following treatment is high for both men and women. Alternative approaches need to be explored, and there are some promising types of recovery homes. From a public health perspective, a series of studies conducted at DePaul University suggests that one type of recovery home for alcohol abuse recovery has much potential. For example, within this self-help communal living setting, recovering alcoholics were able to maintain employment, thereby reducing their need for government subsidies. Maintaining employment for recovering alcoholics may promote increased personal responsibility, which may impact self-efficacy beliefs. These pilot studies, then, raised both theoretical and practical issues needing further evaluation.

The pattern of mental health care in Greece is undergoing a major transformation. The Leros Projects I and II supported the development of 13 community hostels located throughout the Greek mainland. These hostels provide residential care to more than 100 former psychiatric inpatients, mainly from Leros asylum. The present study evaluates the impact of the resettlement process on the residents' perceived quality of life (QoL) together with an examination of the residents' psychiatric and behavioural functioning four years after the move from hospital. The target sample (n = 99) comprised of individuals who may be considered 'chronic' psychiatric patients with a long history of institutionalisation and many are socially deprived with few family ties. The residents' functioning profile indicates a range of different levels of abilities. The QoL findings show that the majority of residents (70%) perceived the movement from the traditional hospital regime to the community hostels as being a positive change and expressed their satisfaction (74%) with the new living situation. This study demonstrates that even the most dependent, chronic psychiatric patients in Greece can be maintained in community settings and are able to articulate generally reliable and valid responses concerning the impact of service changes.

The Government's White Paper on community care has drawn attention to the importance of assessing changes in a person's well-being which occur as a consequence of clinical and social interventions. In the UK the evaluation of the quality of life of people with chronic mental illness is relatively new. This case study demonstrates the use of the 'Lancashire Quality of Life Profile' in routine clinical practice with reference to residential changes in the 'care programme' of a person with a long history of a severely disabling psychotic illness. The formulation and review of his care plan were determined by a network of agencies involved in his long term care.

The current debate about how to provide housing for persons with persistent psychiatric disabilities should be informed by empirical information from a variety of sources.Data from a study of 17 residents discharged from Regeneration House Inc., illustrates the value of consumer perceptions in the evaluation of supportive housing. Extensive exploration of the positive and negative aspects of living in a group home from the perspective of experienced residents provides useful input for programme planning.The implications of the findings for the individual programme and the wider field are discussed.

Although the health-enhancing effects of social support have been well documented, little is known about how to increase the flow of social support among network members. This article describes and evaluates the Caregiver Support Program, a worksite program that attempts to improve the quality of work relationships among house managers and direct care staff who work in group homes for the developmentally disabled. The progam incorporates three strategies for increasing social support: (1) adding a new person or group of persons to the employee's social network, (2) enhancing existing relationships by improving the focal employee's skills for maintaining strong networks and mobilizing support, and (3) enhancing existing relationships by training members of the employee's social network in ways to be more supportive. The Caregiver Support Program was evaluated in a randomized field trial. Results indicate that the program was effective in improving the relationships between direct care staff participants and their house managers. However, other work relationships remained unaffected. The relationship between direct care staff and their house managers was the only work relationship for which both members of the interpersonal dyad participated in the program. The implications of these findings for health education practice and future research are discussed.

Some children with autism and learning disabilities also have aberrant behaviours that are difficult to regulate and stressful for both the child and family members. This case study concerns experiences of 10 parents from five families before and 2 years after entrusting their 10- to 11-year-old child with autism to a group home. Hermeneutic phenomenological analysis of narrative interviews with the parents before the child’s moving showed them experiencing grief and sorrow, total exhaustion because of inability to regulate their child’s behaviours, social isolation, and negative effects on the child’s siblings, but experiencing themselves as more sympathetic than previously towards other people with problems. Two years later they experienced relief for the family due to the group home arrangement and the child’s improvement, but with an ethical dilemma which made them feel guilty, despite increased hope for the future. Some also felt unhappy with the staff situation at the group home.

Dear Editor: We are concerned about the lack of community nursing in our geographical area for adults with intellectual disabilities and mental health problems (that is, a dual diagnosis) and the significant impact this has on our patients and their caregivers. To put this issue into context, individuals with intellectual disabilities are at greater risk than the general population for mental health problems and undiagnosed medical problems. Psychotropic medications can be highly effective when used to treat specific psychiatric disorders in this population, but they are frequently overused and undermonitored (1). Many individuals are unable to report unpleasant or potentially dangerous medication side effects and depend on caregivers to recognize problems. Caregivers in turn may lack training and skills in the area of medication administration and monitoring for side effects. Community nursing support has been identified as an appropriate and cost effective way to follow these individuals in the community and work with their caregivers, families, and family physicians (2). Our specialized, interdisciplinary mental health team serves a region with a population of approximately 900 000 adults (3) of whom an estimated 7500 have a dual diagnosis (assuming a 2.25% prevalence rate of intellectual disabilities in the general population and a 38% prevalence rate of psychiatric problems in individuals with intellectual disabilities, 4). We know of 4 full-time nurses who work with this patient population. By comparison, a study in the UK reported a mean of 2.4 community nurses per 100 000 population who were specifically trained to work with adults with intellectual disabilities (5). If we use data from the UK as a reference point, an area our size would support 21.6 such nurses, rather than the present 4. We contend that enhanced community nursing would ensure better continuity of care for our dual-diagnosis patients and allow increased on-site monitoring and opportunities to educate caregivers about psychiatric disorders and medication effects and side effects. Moreover, it would enable psychiatrists who specialize in dual diagnosis to consult more efficiently with family physicians. We provide actual case examples to illustrate some of our points. Case 1 After a patient with challenging behaviour was again referred, the team discovered that the consulting psychiatrist's recommendation to decrease the patient's neuroleptic medication, made 2 years earlier to the family physician and shared with the group home staff, had not been carried out. …

While at a state institution for people with mental retardation Peter averaged 5.30 hr. sleep per night. At his community home he averaged 7.87 hr. per night, a 48% gain. The responsive environment of his new home engaged Peter in positive social activities which may have led to decreased stress and increased personal comfort, enabling him to sleep longer.