'How long are we able to go on?' Issues faced by older family caregivers of adults with disabilities

Research-informed policy and practice is needed for older caregivers of adult sons/daughters with disabilities. These caregivers are often under tremendous stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Twenty-nine older parents/caregivers of 27 adults with intellectual and/or developmental disabilities were interviewed to explore their views and experiences regarding long-term care and service arrangements, health and psychological needs and 'future planning'. Findings show a severe lack of support, respite care and future planning which causes high stress levels for caregivers. Policy makers and researchers working in this field need to take into consideration the needs of older caregivers when making future plans for adults with disabilities.

Building capacity in palliative care for personal support workers in long-term care through experiential learning

Background

Providing palliative care in long-term care (LTC) homes is an area of growing importance. As a result, attention is being given to exploring effective palliative care learning strategies for personal support workers (PSWs) who provide the most hands-on care to LTC residents.

The purpose of this intervention was to explore hospice visits as an experiential learning strategy to increase the capacity of PSWs in palliative care, specifically related to their new learning, and how they anticipated this experience changed their practices in LTC.

This study utilised a qualitative descriptive design.

Eleven PSWs from four Ontario LTC homes were sent to their local hospice to shadow staff for one to two days. After the visit, PSWs completed a questionnaire with open-ended questions based on critical reflection. Data were analysed using thematic content analysis.

PSWs commented on the extent of resident-focused care at the hospice and how palliative care interventions were tailored to meet the needs of residents. PSWs were surprised with the lack of routine at the hospice but felt that hospice staff prioritised their time effectively in order to meet family and client care needs. Some PSWs were pleased to see how well integrated the PSW role is on the community hospice team without any hierarchical relationships. Finally, PSWs felt that other LTC staff would benefit from palliative care education and becoming more comfortable with talking about death and dying with other staff, residents and family members.

This study highlighted the benefits of PSWs attending a hospice as an experiential learning strategy. Future work is needed to evaluate this strategy using more rigorous designs as a way to build capacity within PSWs to provide optimal palliative care for LTC residents and their family members.

PSWs need to be recognised as important members within the interdisciplinary team. PSWs who shadow staff at hospices view this experience as a positive strategy to meet their learning needs related to palliative care.

Substance Use Behaviours of Young People with A Moderate Learning Disability: A longitudinal analysis

Substance use behaviours of young people attending a special school are reported over a four year period from the age of 12-16 years. The paper investigated these behaviours by surveying a cohort of young people with a statement for moderate learning disabilities annually during the last four years of compulsory schooling. The findings show that these young people consistently reported lower levels of tobacco, alcohol and cannabis use compared with those attending mainstream school. No other illicit drug use was reported. The potential implications of these findings are discussed in relation to the context and timing of targeted substance education and prevention initiatives for young people with moderate learning disability attending a special school.

Costing the hospital-based process of resettling people with learning disability in the community

Objectives: Much has been written about the costs and cost-effectiveness of community care for people with learning disabilities resettled from long stay hospital care. However, comparatively little has been published about the cost of hospital services relating to the preparatory process before eventual resettlement and the disengagement of formal, sustained input from hospital staff. This study describes and costs the input provided by a hospital based multi-disciplinary team into the resettlement of adults with learning disabilities, from long stay wards in Muckamore Abbey Hospital in Northern Ireland between 1996 and 1999 (n = 71).

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

Providing a healthcare input to children in special schools

The education of children with speical educational needs is often accompanied by a requirement for medical or healthcare provision. If this cannot be done safely then the child's access to education may be limited. No standardised template for the delivery of a healthacre input to children in special schools is apparent. This study sought to explore through the use of an indepth needs assessment exercise and focus group interviews, what the most appropriate healthcare roelewas for delivering heathcare in a special school catering for children with a broad range of severe learning disabilities. While an overwhelming viewpoint of participants in focus gorups perceived that a nurse was the only suitable person to undertake the role, the evidence gathered promoted the research steering group to suggest to the contrary, i.e. that the role of a healthcare with a national vocational qualification (NVQ) level 3 in care was more the appropriate person to maximise both the role of the nurse and the quality of care provided to these children.

Proofreading Using an Assistive Software Homophone Tool Compensatory and Remedial Effects on the Literacy Skills of Students With Reading Difficulties

The present study investigated the effects of using an assistive software homophone tool on the assisted proofreading performance and unassisted basic skills of secondary-level students with reading difficulties. Students aged 13 to 15 years proofread passages for homophonic errors under three conditions: with the homophone tool, with homophones highlighted only, or with no help. The group using the homophone tool significantly outperformed the other two groups on assisted proofreading and outperformed the others on unassisted spelling, although not significantly. Remedial (unassisted) improvements in automaticity of word recognition, homophone proofreading, and basic reading were found over all groups. Results elucidate the differential contributions of each function of the homophone tool and suggest that with the proper training, assistive software can help not only students with diagnosed disabilities but also those with generally weak reading skills.

A Long and Winding Road to Employment?: Disabled young people in Northern Ireland making the transition to adulthood

This paper presents the findings of a qualitative research project that explores the experiences and aspirations of disabled young people in Northern Ireland as they make and deal with the transition to adulthood. The study involved young people with disabilities (n=76) in four areas of Northern Ireland, ensuring a geographical spread, an urban/rural mix and representation of both communities. Young people with learning disabilities were included as well as those with physical and/or sensory impairments. This paper focuses on those who were completing job training or work placements and examines the role of such schemes in assisting young people’s transition to adulthood. The research found that many young people had positive experiences of work placement and job training and that social interaction was important to them. Few young people, however, had made the actual transition from work placement or training to ‘real’ employment.

Family support, social capital, resilience and adolescent coping

All too often young people are excluded in practice from the general policy and professional consensus that partnership and participation should underpin work with children, young people and their families. If working with troubled and troublesome young people is to be based on family support, it will require not only the clear statement of that policy but also demonstration that it can be applied in practice. Achieving that involves setting out a plausible theory of change that can be rigorously evaluated. This paper suggests a conceptual model that draws on social support theory to harness the ideas of social capital and resilience in a way that can link formal family support interventions to adolescent coping. Research with young people attending three community-based projects for marginalized youth is used to illustrate how validated tools can be used to measure and document the detail of support, resilience, social capital and coping in young people's lives. It is also suggested that there is sufficient fit between the findings emerging from the study and the model to justify the model being more rigorously tested.

Risk and resilience: The moderating role of social coping for maternal mental health in a setting of political conflict:The moderating role of social coping for maternal mental health in a setting of political conflict

Violence can threaten individual wellbeing and tear at the social fabric of communities. At the same time, suffering can mobilize social coping and mutual support. Thus, the backdrop of political violence increases risk factors and stimulates resilience. The current study examined the moderating role of social coping as reflective of risk and resiliency in Northern Ireland, a setting of protracted conflict. Specifically, structural equation modeling was used to investigate whether social coping protects from or exacerbates the negative impact of sectarian crime and nonsectarian crime on maternal mental health (N?=?631). Nonsectarian crime predicted greater psychological distress for mothers in Belfast. Mixed support was found for the buffering and depletion moderation hypotheses; social coping functioned differently for nonsectarian crime and sectarian crime. Greater social coping buffered mothers' psychological distress from the negative effects of nonsectarian crime, but exacerbated maternal mental health problems when facing sectarian crime. Results suggest that social coping is a complex phenomenon, particularly in settings of protracted political violence. Implications for interventions aimed at alleviating psychological distress by enhancing mothers' social coping in contexts of intergroup conflict are discussed. We would like to thank the many families in Northern Ireland who have participated in the project. We would also like to express our appreciation for the project staff, graduate students, and undergraduate students at the University of Notre Dame and the University of Ulster. A special thanks to Cindy Bergeman and Dan Lapsley for feedback on earlier drafts of this manuscript. This research was supported by NICHD grant 046933-05 to the E. Mark Cummings.

Best friends and better coping: Facilitating psychological resilience through boys’ and girls’ closest friendships

This is a novel investigation of whether, and how, a single close supportive friendship may facilitate psychological resilience in socio-economically vulnerable British adolescents. A total of 409 adolescents (160 boys, 245 girls, four unknown), aged between 11 and 19 years, completed self-report measures of close friendship quality, psychological resilience, social support, and other resources. Findings revealed a significant positive association between perceived friendship quality and resilience. This relationship was facilitated through inter-related mechanisms of developing a constructive coping style (comprised of support-seeking and active coping), effort, a supportive friendship network, and reduced disengaged and externalising coping. While protective processes were encouragingly significantly present across genders, boys were more vulnerable to the deleterious effects of disengaged and externalizing coping than girls. We suggest that individual close friendships are an important potential protective mechanism accessible to most adolescents. We discuss implications of the resulting Adolescent Friendship and Resilience Model for resilience theories and integration into practice.

Collectively coping with contact: The role of intragroup support in dealing with the challenges of intergroup mixing in residential contexts

The social identity approach to stress has shown how intragroup support processes shape individuals' responses to stress across health care, workplace, and community settings. However, the issue of how these 'social cure' processes can help cope with the stress of intergroup contact has yet to be explored. This is particularly important given the pivotal role of intergroup threat and anxiety in the experience of contact as well as the effect of contact on extending the boundaries of group inclusion. This study applies this perspective to a real-life instance of residential contact in a divided society. Semi-structured interviews with 14 Catholic and 13 Protestant new residents of increasingly mixed areas of Belfast city, Northern Ireland, were thematically analysed. Results highlight that transitioning to mixed communities was fraught with intergroup anxiety, especially for those coming from 'single identity' areas. Help from existing residents, especially when offered by members of other religious denominations, signalled a 'mixed community ethos' to new residents, which facilitated adopting and sharing this identity. This shared identity then enabled them to deal with unexpected intergroup threats and provided resilience to future sectarian division. New residents who did not adopt this shared identity remained isolated, fearful, and prone to negative contact.