The dynamics of support over time in the intentional support networks of nine people with intellectual disability

Published on Oct 1, 2013in Disability & Society
· DOI :10.1080/09687599.2012.741515
Anne Hillman5
Estimated H-index: 5
(USYD: University of Sydney),
Michelle Donelly7
Estimated H-index: 7
(SCU: Southern Cross University)
+ 5 AuthorsTrevor R. Parmenter24
Estimated H-index: 24
(USYD: University of Sydney)
This paper describes the dynamics of support observed in the networks of nine adults with intellectual disability, developed by families who had committed to achieving a ‘good life’ for this person. Network members, including the person with a disability, participated in this longitudinal ethnographic study. Three principles that underpinned their work were positive and respectful relationships, mentorship and providing opportunities and expectations. Participants worked actively with other network members to develop higher levels of autonomy and social participation.
  • References (18)
  • Citations (6)
📖 Papers frequently viewed together
5 Authors (Evan Dean, ..., Rachel Mellenbruch)
3 Citations
27 Citations
78% of Scinapse members use related papers. After signing in, all features are FREE.
#1Anne Hillman (USYD: University of Sydney)H-Index: 5
#2Michelle Donelly (SCU: Southern Cross University)H-Index: 7
Last. Trevor R. Parmenter (USYD: University of Sydney)H-Index: 24
view all 8 authors...
Background This research describes issues related to human rights as they arose within the everyday lives of people in nine personal support networks that included adult Australians with an intellectual disability (ID). Method The research was part of a wider 3-year ethnographic study of nine personal support networks. A major criterion for recruitment was that people in these networks were committed to actively developing the positive, meaningful future of an adult family member with an ID. Dat...
5 CitationsSource
#1Eric D. Widmer (University of Geneva)H-Index: 20
Last. Giuliana Galli CarminatiH-Index: 7
view all 5 authors...
Using social network methods, this article explores the ways in which individuals with intellectual disability (ID) perceive their family contexts and the social capital that they provide. Based on a subsample of 24 individuals with ID, a subsample of 24 individuals with ID and psychiatric disorders, and a control sample of 24 pre-graduate and postgraduate students matched to the clinical respondents for age and sex, we found that family networks of clinical individuals are distinct both in term...
28 CitationsSource
#1Barbara TedlockH-Index: 1
Participant observation was created during the late 19th century as an ethnographic field method for the study of small, homogeneous cultures. Ethnographers were expected to live in a society for an extended period of time (2 years, ideally), actively participate in the daily life of its members, and carefully observe their joys and sufferings as a way of obtaining material for social scientific study. This method was widely believed to produce documentary information that not only was “true” bu...
109 Citations
#1HannahKnoxH-Index: 11
#2Mike SavageH-Index: 48
Last. PennyHarveyH-Index: 8
view all 3 authors...
Networks have recently become fashionable in social analysis but most of the new network approaches have paid scant attention to the long history of reflections upon the potential of networks as an analytical device in the social sciences. In this paper we chart the developments in networking thinking in two disciplinary areas - social network analysis and social anthropology - in order to highlight the enduring difficulties and problems with network thinking as well as its potential. The first ...
186 CitationsSource
#1Keith R. McVilly (USYD: University of Sydney)H-Index: 18
#2Roger J. Stancliffe (USYD: University of Sydney)H-Index: 33
Last. R Burton-Smith (UTAS: University of Tasmania)H-Index: 6
view all 4 authors...
Background This study explored 'loneliness' as experienced by adults with intellectual disability, with 'intermittent' to 'limited' support needs. Method A measure of loneliness was piloted, and qualitative techniques used to develop a greater understanding of the participants' experience. Results The Loneliness Scale proved valid and reliable and the participants reported loneliness in ways comparable with the general population. Conclusions The findings demonstrate the effectiveness of combini...
101 CitationsSource
More and more persons with mental retardation and psychiatric disabilities are present in mainstream society, yet have little interaction and few relationships outside their own peer groups of devalued persons. Social integration remains a desirable yet elusive goal for most human service organizations, and there continues to be a certain amount of confusion about what constitutes social integration. Recent reviews in North America and Europe testify to the difficulty of achieving social integra...
34 CitationsSource
#1Rachel Forrester-Jones (UKC: University of Kent)H-Index: 15
#2John Carpenter (Durham University)H-Index: 22
Last. David Wooff (Durham University)H-Index: 15
view all 9 authors...
Background The social inclusion of people with intellectual disabilities presents a major challenge to services. As part of a 12-year follow up of people resettled from long-stay hospitals, the size of 213 individuals’ social networks and the types of social support they received were investigated, as viewed by people with intellectual disabilities themselves. The types of support received in four different kinds of community accommodation were compared. Method Individuals were interviewed and t...
130 CitationsSource
#1Eric Emerson (Lancaster University)H-Index: 58
#2Keith R. McVilly (USYD: University of Sydney)H-Index: 18
Background Despite there being considerable evidence to suggest that friendships are central to health and well-being, relatively little attention had been paid to the friendships of people with intellectual disabilities. Methods Friendship activities involving people with and without intellectual disabilities were measured over the preceding month in a sample of 1542 adults with intellectual disabilities receiving supported accommodation in nine geographical localities in Northern England. Resu...
96 CitationsSource
#1R.H. van Hooren (UM: Maastricht University)H-Index: 3
#2Guy Widdershoven (UM: Maastricht University)H-Index: 34
Last. L.M.G. CurfsH-Index: 12
view all 4 authors...
Abstract Background The policy concerning care for people with intellectual disability (ID) has developed from segregation via normalization towards integration and autonomy. Today, people with ID are seen as citizens who need to be supported to achieve a normal role in society. The aim of care is to optimize quality of life and promote self-determination. The promotion of autonomy for people with ID is not easy and gives rise to ethical dilemmas. Caregivers are regularly confronted with situati...
35 CitationsSource
63 CitationsSource
Cited By6
#1Bernadette Curryer (USYD: University of Sydney)H-Index: 1
#2Roger J. Stancliffe (USYD: University of Sydney)H-Index: 33
Last. Angela Dew (Deakin University)H-Index: 16
view all 4 authors...
BACKGROUND: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support. METHODS: An interpretative phenomenological analysis (IPA) of eight individual, semi-structured interviews with mothers was conducted, to understand th...
#1Grahame Gee (CMHS: Mental Health Services)
#2Jenny Conder (University of Otago)H-Index: 3
Last. Simon J. Adamson (University of Otago)H-Index: 18
view all 3 authors...
#1Rafat Hussain (ANU: Australian National University)H-Index: 26
#2Stuart Wark (UNE: University of New England (Australia))H-Index: 7
Last. Trevor R. Parmenter (USYD: University of Sydney)H-Index: 24
view all 5 authors...
Abstract Background Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, little is known regarding how end-of-life affects the individual’s personal relationships with family, friends and staff. Methods Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-struc...
#1Andrea Jardí (University of Barcelona)
#2Ignasi Puigdellívol (University of Barcelona)H-Index: 3
Last. Cristina Petreñas (University of Lleida)H-Index: 3
view all 3 authors...
ABSTRACTA critical aspect of inclusive policies and practices is the role that Teacher Assistants (TAs) are supposed to assume within mainstream classrooms. Despite the evidence, TAs are still linked to the most vulnerable children, especially those with severe afflictions. This exploratory mixed method of investigation analyses the differences between the job requirements standardised by the Catalan Government (Spain), the roles the TAs believed they had been hired to perform and the tasks they...
#1Christine Bigby (La Trobe University)H-Index: 28
#2Emma Bould (La Trobe University)H-Index: 7
Last. Julie Beadle-Brown (UKC: University of Kent)H-Index: 25
view all 3 authors...
ABSTRACTBackground Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living that separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of supported living might b...
11 CitationsSource
#1Glenys MannH-Index: 3
It is of ongoing concern that disability continues to be connected with disadvantage and thatchildren with disability are less likely to experience an optimal school life than those without. It iswidely believed that an inclusive approach will address inequities in the schooling system, andmany governments have adopted this philosophy through the development of inclusive educationpolicies. In spite of these policies, the good school life that inclusive education promises hasremained elusive to m...
1 CitationsSource
#1Bernadette Curryer (USYD: University of Sydney)H-Index: 1
#2Roger J. Stancliffe (USYD: University of Sydney)H-Index: 33
Last. Angela Dew (USYD: University of Sydney)H-Index: 16
view all 3 authors...
27 CitationsSource
#1Iva Strnadová (UNSW: University of New South Wales)H-Index: 11
#2Therese M. Cumming (UNSW: University of New South Wales)H-Index: 10
Last. Hee Min Lee (UNSW: University of New South Wales)H-Index: 1
view all 5 authors...
AbstractBackground The lifespan of women with intellectual disability (ID) has been steadily increasing, bringing new and unique challenges to these individuals and those who support them. Understanding these issues will help to improve support services for this population.Methods Using inclusive research methods, 15 older women with ID were interviewed about their wellbeing and their views on growing older.Results Interview data were analysed using the grounded theory approach. The core phenome...
10 CitationsSource