Ruth Webber

Hospital experiences of older people with intellectual disability: Responses of group home staff and family members

Abstract Background This study reports on the hospitalisation experiences of older adults with intellectual disability living in group homes. Methods Grounded dimensional analysis was used to guide data collection and analysis. Group home residents were tracked prospectively over a 3-year period. Interviews were conducted with family, group home, and aged care staff and managers, and some residents. Results Findings highlighted the difficulty people with intellectual disability experience in hospital settings. Findings revealed extensive strategies undertaken by family members and group home staff to improve hospital experiences. Ageing of the family members and staffing implications for group homes complicated efforts to improve hospital experiences. Conclusions The current absence of systems to accommodate the special needs of people with intellectual disability in hospital settings has significant consequences for group homes, family members, hospital staff, and residents. Most hospital systems appear to be poorly designed to care for this vulnerable population.

A survey of people with intellectual disabilities living in residential aged care facilities in Victoria

BACKGROUND Australias national ageing policy recognises that people ageing with intellectual disability (ID) require particular attention, yet there is no policy framework concerning this population. This study describes the distribution and characteristics of people with ID in residential aged care in Victoria, provides insights into the pathways they take into aged care, and gives some indications of how facilities adapt to their needs. METHOD A postal survey was sent to 826 residential aged care facilities in Victoria, seeking information from directors about their residents with ID. Facilities that responded were fairly representative of all facilities in Victoria. FINDINGS Residents with ID were younger, had entered at an earlier age and remained longer than other residents. Their reported dependency profile was similar to the general aged care population, although the incidence of dementia was lower. Primary areas of concern identified by providers were: inability to fit into the resident community, lack of participation in activities and lack of meaningful relationships. CONCLUSION This study provides a first glimpse into how older people with ID find their way into aged care and how others view their experiences once there. It suggests that further investigation is required into the accuracy of assessment undertaken prior to entry to more clearly understand whether residents with ID are inappropriately placed in residential aged as a result of a shortage of disability accommodation and inadequate resources to support aging in place for those in such accommodation.

Planning and decision making about the future care of older group home residents and transition to residential aged care

BACKGROUND Planning for future care after the death of parental caregivers and adapting disability support systems to achieve the best possible quality of life for people with intellectual disability as they age have been important issues for more than two decades. This study examined perceptions held by family members, group home staff and organisational managers about the future of older residents and the decisions made that a move to residential aged care was necessary. METHODS Grounded Dimensional Analysis was used to guide data collection and analysis by an interdisciplinary research team. Three sets of interviews over a period of 18 months were conducted with a family member, house supervisor and the programme manager for each of seventeen older group home residents in Victoria. For the eight people for whom it was decided a move was necessary and the six who eventually moved focussed questions were asked about the decision-making process. RESULTS While plans for lifelong accommodation in a group home proved unfounded, key person succession plans were effective. However, decisions to move to a residential aged care facility where necessary were made in haste and seen as a fait accompli by involved family members. CONCLUSIONS Although family members take seriously their mandate to oversee well-being of their older relative, they have little knowledge about their rights or avenues to safeguard untimely or inappropriate decisions being made by professionals.

The spirituality of young Australians

A research project conducted in 2003–2006, the Spirit of Generation Y, using both extended interviews and a nationwide survey, revealed three main strands in the spirituality of young Australians: traditional, alternative and humanist. Their involvement in traditional religions was declining, like that of their parents, and although some adopted alternative spiritualities, the stronger trends were toward indifference or humanism. Eclecticism in worldviews and cautiously relativistic values seem to be responses to an uncertain world, in which isolated individuals have only fragile support structures for their identity.

Integrating work‐based and academic learning in international and cross‐cultural settings

A recent study focused on workplace learning in the UK, USA and Canada; 14 universities, two community colleges and 15 host organisations were included. Interviews were conducted with directors of professional peak associations, academic supervisors, placement officers, managers and/or field supervisors and students. This paper reports on the ways in which higher education institutions organise and prepare students, academic staff and site supervisors to work in international and cross‐cultural work‐based programmes. It examines the level of integration that occurs between academic learning and the planning and execution of cross‐cultural and/or international work‐based placements.

Staff responses to age‐related health changes in people with an intellectual disability in group homes

The purpose of this study was to explore how supervisors in group homes caring for people with intellectual disability responded to the development of age‐related health changes in their residents. Ten group home supervisors working in the disability sector were interviewed once. Data were analysed using Dimensional Analysis. The study identified several factors related to whether a resident could stay ‘at home’ or would need to be moved to residential aged care (nursing home) including: nature and extent of group home resources, group home staff comfort with residents’ health changes, staff skill at navigating the intersection between the disability and ageing sectors, and the supervisor’s philosophy of care. The ability of older people with an intellectual disability to ‘age in place’ is affected by staff knowledge about and comfort with age‐related illnesses, staff skills at navigating formal services, staffing flexibility, and the philosophy of group home supervisors. Despite the growing international concern for the rights of people with disability, particularly in relation to decision making, questions about the older person’s choice of residence and participation in decision making about what was best for them, were almost nonexistent. Rather, decisions were made based on what was considered to be in ‘the best interest’.

Spiritual Well-Being and Its Relationship to Resilience in Young People: A Mixed Methods Case Study

Questions have arisen recently about the role of spiritual well-being in strengthening resilience of youth. To explore this association, this case study focused on the relationships and connectedness of young people who attend one religious organization as a means of enhancing their spiritual well-being. In line with the purposes of an instrumental case study, different sources of data (quantitative and qualitative) were collected on the phenomenon of interest—spiritual well-being. A theoretical purposive sample of 65 people participated in the study. A mixed methods research approach guided this case study, which incorporated both single- and multicase study techniques. Through an abductive analysis process, spiritual well-being and resilience were shown to be interrelated and ecologically bound. This mixed methods case study presents one possible explanation for the often observed yet poorly understood relationship between spiritual well-being and positive youth outcomes, such as resilience.

The dance of disclosure: Online self-disclosure of sexual assault

The painful route that many survivors take to disclosing sexual assault is well documented, as is the low rate of formal reporting of such incidents. Previous research has examined self-disclosure in traditional settings but not online, where this research found a small but significant amount of help-seeking behaviour occurring. An in-depth analysis of 31 questions and answers on Yahoo! Answers in Australia containing disclosures of sexual assault was conducted. Drawing on interpretive descriptive methodology, clear patterns of help-seeking behaviours and responses were identified and categorized. These patterns constitute what we termed the ‘dance of disclosure’, a theme that could form the basis for further research in this area. Survivors disclosing on this site frequently expressed feeling ‘nowhere else to turn’. In particular a highly vulnerable group was identified as utilizing this medium – survivors who had been abused by people close to them in the past when they were under the age of puberty. Although most responses were supportive, a small number of negative comments were of concern, given survivors’ particular sensitivity to feedback and the influence initial responses have on their inclination to disclose further. As these sites attract survivors reluctant to make contact with social workers and online disclosure can leave victims open to internet predators, we encourage sexual assault counselling centres to consider new outreach methods such as informal monitoring of these sites to offer support and notify survivors of available professional services. It concludes by mentioning some innovative online outreach methods currently being practiced.

Sibling Roles in the Lives of Older Group Home Residents with Intellectual Disability: Working with Staff to Safeguard Wellbeing

Abstract When parents die, siblings of older people with intellectual disability are likely to take responsibility for oversight of their wellbeing and negotiation with formal support services. This study explored the roles siblings played in the lives of older people with intellectual disability who live in group homes, and the relationships between residents’ siblings and group home staff. The siblings of 13 group home residents and the 17 supervisory staff associated with these services were interviewed, initially face-to-face and then intermittently by phone over a period of three years. Data were analysed using an inductive analytical approach. Siblings valued the relationship with their brother or sister with intellectual disability and played a significant role in safeguarding their wellbeing. Sibling–staff relationships fluctuated over time, sometimes becoming tense and difficult. Few protocols guided these relationships. A principle-based framework could facilitate negotiation between staff and siblings about expectations of communication and decision making.

Health issues of older people with intellectual disability in group homes

Abstract Background This paper explores how group home staff in Victoria, Australia, responded to residents with an intellectual disability (ID) as residents developed age-related health conditions. Method The analysis was based on a longitudinal study that followed 17 ageing group home residents over a 3-year period. Eighty-three interviews were conducted with 30 group home staff in 17 group homes. Dimensional analysis, a variant of grounded theory, guided data collection and analysis. Results Findings revealed that the organisations all had systems in place to address health issues. However, the results also suggest an inability of staff to differentiate between significant health conditions and normal age-related changes, thus contributing to delays in care for serious medical conditions. Conclusions Lack of knowledge about normal ageing and an absence of organisational policies influence timeliness of diagnosis and treatment for people with ID. Group home staff could be more effective advocates for older residents, leading to improvements in health outcomes, if they had basic knowledge about normal ageing and symptoms of common age-related illnesses and if group home agencies provided clearer guidance to their staff. The study has implications for staff education and organisational policy development for group homes.