Recognising reciprocity over the life course: adults with cerebral palsy and their non-disabled siblings

This study addresses the development of the relationship between individuals with moderate to severe cerebral palsy and their non-disabled siblings over their life course. There has as yet been no focus on the sibling relationships of adults with moderate to severe cerebral palsy. Those with moderate to severe cerebral palsy can require high levels of personal care and assistance with activities of daily living throughout their lives, due to their often significant physical and communication impairments. This coupled with the fact that they are living longer and outliving their parents, means that the support previously provided by parents may pass to siblings. Previous research into the transition from parental care has focused on people with intellectual disability, with those with cerebral palsy as a sub-group. This approach overlooks the quite specific needs of individuals with cerebral palsy, which warrant separate attention. Previous research has also treated this transition as a singular event rather than looking at it within the context of the person’s life course. Given that sibling relationships are the longest and most durable throughout a person’s life, it makes sense to view the later life relationships between individuals with cerebral palsy and their non-disabled siblings in the context of their earlier life experiences. The aim of this study was to explore the relationships between individuals with moderate to severe cerebral palsy aged 40 years and over and their non-disabled siblings in the context of the future: when parents can no longer provide care for their adult son or daughter with cerebral palsy. To address this aim a qualitative research design was adopted, with symbolic interactionism as the theoretical underpinning. Two in-depth interviews were conducted with each of 12 adults with cerebral palsy and 16 of their non-disabled siblings. The interviews took a life-course approach, asking participants to describe their childhood, emerging adulthood, and later life circumstances and sibling interactions. Constructivist grounded theory was used to analyse the data, identify the primary finding and develop a conceptual framework. Analysis of the data highlighted the diversity of sibling relationships. Nonetheless, various pathways were identified. Living together with or being separated from their non-disabled siblings in childhood affected the sibling relationship and influenced either the development of warm relationships or a feeling of separation and distance. In young adulthood, participants with cerebral palsy who shared transition milestones with their non-disabled siblings and developed personal autonomy further strengthened their sibling bond. Subsequently, in middle and older age, facing parents’ and their own ill health and mortality tended to bring siblings closer together. Taking a life-course approach to the relationship between individuals with cerebral palsy and their non-disabled siblings led to the identification of the primary finding of this study that reciprocity can develop in the relationship between people with moderate to severe cerebral palsy and their non-disabled siblings. Reciprocity is recognised as operating as a generalised moral norm, with people motivated to reciprocate the help they receive from others based on obligation or altruism. Reciprocity may be either instrumental, through the exchange of practical aid and direct services, or symbolic, relating to the mutual trust, regard and respect which people develop towards those with whom they have a long-term relationship. The existence of reciprocity in the sibling relationships of people with moderate to severe cerebral palsy and their non-disabled siblings is particularly important in middle and later life when parents are no longer as actively involved in the life of their son or daughter with cerebral palsy. At this time sibling relationships may take on greater significance. Four variables, contact, shared experiences, parental status and role, and support needs, formed the basis of a conceptual framework for understanding the development of instrumental and symbolic reciprocity between participants with cerebral palsy and their non-disabled siblings. The framework provides a useful way for people with cerebral palsy, their family members, and service providers to consider the roles which people with cerebral palsy and their non-disabled siblings might play in each other’s lives. This study is an important beginning in identifying a nuanced relationship between individuals with cerebral palsy and their siblings in which reciprocity plays a significant and previously unrecognised part

Delivering private therapy in rural Australia

Enabling high quality, sustainable and accessible services: A framework for rural private therapists.Department of Families, Housing, Community Services and Indigenous Affairs, Australian Government

The Wobbly Hub & Double Spokes project: people with a disability in rural areas.

The Wobbly Hub and Double Spokes project aims to develop, implement and evaluate new models of therapy service delivery for people with a disability living in rural areas. Based on our research work in Western NSW and the experience of the team, we have developed four streams of enquiry related to people with a disability in rural areas: Insights into rural contexts; access to supports; alternative service models and workforce development.Department of Ageing, Disability and Home Care, NSW Government

Barriers to the use of Information and Communication Technology by occupational therapists working in a rural area of New South Wales, Australia

Background/aim: This qualitative study formed part of a large-scale, multi-phase study into the delivery of therapy services to people with a disability, living in one rural area of New South Wales, Australia. The study’s purpose was to identify the impact of information and Communication Technology on the workforce practices of occupational therapists’ working in a rural area of New South Wales. Methods: Individual semi-structured telephone interviews were conducted with 13 occupational therapists working in disability, health and private practice in a rural area of New South Wales. Participants were asked about access to, skills and limitations of using Information and Communication Technology. A modified grounded theory approach, based on thematic analysis and constant comparison,was used to analyse the interview transcripts. Results: This study found widespread use of technology by rurally based occupational therapists working in the disability sector in New South Wales. However, Information and Communication Technology was primarily used for client contact, professional development and professional networking rather than therapy provision. The study identified individual, workplace and community barriers to greater uptake of Information and Communication Technology by this group. The individual barriers included: age cohort, knowledge and personal preferences. The workplace barriers included: support and training and availability of resources. The community barriers included: infrastructure and perceptions of clients’ acceptance.Conclusion: The potential exists for Information and Communication Technology to supplement face-to-face therapy provision, enhance access to professional development and reduce professional isolation thereby addressing the rural challenges of large distances, travel times and geographic isolation. To overcome these challenges, individual, workplace and community Information and Communication Technology barriers should be addressed concurrently

Structuring Photovoice for Community Impact: A Protocol for Research With Women With Physical Disability

Women with disability face participation barriers based on long-held misconceptions around their identity that adversely affect their health, income levels, and access to education and employment. It has been noted that photographs produced through photovoice methodology can help dismantle attitudinal and environmental barriers that people with disability continue to confront, but this method is rarely assessed for impact. In this protocol paper, we merge principles of feminist theory, photovoice methodology and integrated knowledge translation to generate 1. exhibition-quality participant-created photography on identity, 2. discussion around and insight into inclusion for women with disability and 3. a public exhibition to understand any impact these photographs may have on audiences and discriminatory barriers. Photographs, text, discussions and audience feedback are to be interrogated through thematic and narrative analysis. By aiming our arts-based research findings for a public audience, we hope to advance understanding of female identity and inclusion.Frauen mit Beeinträchtigungen erleben oft Teilhabebarrieren infolge langdauernder Fehleinschätzungen über ihre Identität, gefolgt von negativen Effekten für ihre Gesundheit, ihr Einkommen und ihren Zugang zu Bildung und Arbeit. In rückliegenden Arbeiten wurde bereits gezeigt, dass Fotos, die mittels des Photovoice-Verfahrens produziert wurden, halfen, Einstellungs- und Umgebungsbarrieren abzubauen, allerdings wurde die Methode kaum mit Blick auf möglichen öffentlichen Impact genutzt. In diesem Protokollpapier haben wir Prinzipien miteinander verbunden, die auf feministische Theorien, die Photovoice-Methode und integrierte Wissensvermittlungspraktiken zurückgehen, um 1. ausstellungsreife Fotografien zur Identität der Forschungsteilnehmerinnen zu generieren, 2. zur Diskussion von und Einsicht in Inklusion für beeinträchtige Frauen beizutragen und 3. eine Ausstellung zu initiieren, um zu verstehen, welchen Impact die Fotos auf das Publikum und auf diskriminierende Barrieren haben können. Fotografien, Texte, Diskussionen und Publikums-Feedback wurden einer thematischen und narrativen Analyse unterzogen. Indem wir mit unserer kunstbasierten Forschung eine breite Öffentlichkeit adressierten, hoffen wir, zu einem besseren Verständnis von weiblicher Identität und Inklusion beigetragen zu haben

Complexity Embodied: Using Body Mapping to Understand Complex Support Needs

Arts-based methods reduce reliance on verbal communication. This makes them particularly useful for exploring sensitive and controversial topics, which can often be difficult to articulate verbally, and capturing the experiences and insights of marginalised groups including people with complex support needs. The visual arts-based method of body mapping provides an alternative way for participants to express their views and experiences through non-verbal storytelling. In this article, we report on the adaptation of body mapping to conduct research with two disadvantaged groups: adults with cognitive disability and complex support needs; and young people with complex support needs. We identify the potential of the method to promote participants\u27 choice and control over the research process and the onus on researchers to create and maintain a mutually safe and supportive environment. Body mapping is also identified as a useful practical tool for use by individuals and their supporters. Arts-based methods, including body mapping, have the potential to empower people with complex support needs to engage more fully in research, which provides a greater understanding of their experiences, views, and feelings

Strengthening Supports for Children 0-8 years and their Families: A Literature Review

The Strengthening Supports for Children and Families 0-8 Years Strategy is to improve the way that the New South Wales (NSW) Department of Family and Community Services: Ageing, Disability and Home Care (ADHC) provide services to young children and their families (NSW Government, 2013b). Consistent with the international, national and state policy context and discourse, ADHC’s strategy encourages the inclusion of young children with disabilities and their families in mainstream settings. This report presents the findings of a systematic review of the literature on interventions provided in mainstream settings for children with disabilities aged 0 to 8 years and their families. Further, the focus of the review is on inclusion-based approaches to delivering services in mainstream settings. The review examines the literature describing: - best practice for promoting the inclusion of young children and their families - benefits and outcomes of inclusion-based approaches - key factors in the effective provision of inclusion-based approaches - barriers and challenges to inclusion-based approaches.New South Wales Department of Family and Community Services: Ageing, Disability and Home Care

Older disabled workers’ perceptions of volunteering

The activity of volunteering is readily available to, and undertaken by, able-bodied people in Australia and is recognized as a valuable social pursuit, particularly among citizens of retirement age. Despite the known benefits of volunteering, however, there are few reports of disabled people participating as volunteers and little is understood of their experiences or perceptions of volunteering. The aim of this study was to explore how older workers within supported employment settings perceived the opportunities for and barriers to volunteering. Fourteen people with long-standing impairments participated in this small qualitative study. Overall the participants were positive about volunteering, but noted they might require support to volunteer successfully. Drawing upon the participants' views, recommendations are made for developing training. Disabled workers facing retirement need to be supported to have opportunities for active participation in the community as volunteers if so desired.16 page(s