Relationships and the transition from spinal units to community for people with a first spinal cord injury: A New Zealand qualitative study

Bourke, John A.; Nunnerley, Joanne L.; Sullivan, Mike; Derrett, Sarah

doi:10.1016/j.dhjo.2018.09.001

Cited by 13 publications

(17 citation statements)

References 27 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…From the ideas expressed by PWD [34,63,[66][67][68]72] and close others [62,67], knowing the individual was inferred as a critical factor in providing quality support. Consistent with the individualised support theme described above, findings reported from the perspective of PWD and close others indicated that familiarity reduces the burden of repeatedly instructing their support worker and enables the DSW to be responsive to their needs [64,[67][68][69]. Additionally, from the perspective of family members, the person with disability knowing their support worker well provided a feeling of security [62].…”

Section: Relationshipsupporting

confidence: 52%

“…Person-centred approach. Results presented from the perspective of PWD [35,64,67,68,75] and close others [67,70] suggested a preference for DSWs taking a person-centred, humanistic approach to support. Feeling "seen" as a person was described by multiple participants with disability [35,67,75].…”

Section: Individualised Supportmentioning

confidence: 98%

“…Choice and control The first theme, choice and control, encapsulates the importance of the person with disability being able to (1) choose and manage their support, (2) be involved in decision making, and 3) use their own capacity. This was highlighted by all participant groups across 9 studies involving interviews investigating relationships [64], needs [65], quality of care [67], dependence on care [69], strategies to achieve autonomy [73] and other life experiences [35,74] post-acquiring the disability, as well as the experiences of paid support for close others [62] and DSWs' work experiences [63].…”

Section: Participant Characteristicsmentioning

confidence: 99%

“…Choosing and managing support. The subtheme, choosing and managing support, was extracted from 6 articles from the perspective of PWD [64,65,73,74 Ã ], close others [62] and DSWs [64]. PWD emphasised the importance of being allowed to choose "who, and what we're going to do together and when" [73].…”

Section: Participant Characteristicsmentioning

confidence: 99%

“…PWD emphasised the importance of being allowed to choose "who, and what we're going to do together and when" [73]. This subtheme was primarily concerned with being able to choose the "type of carers [they] like" rather than workers "swapping and changing" [64] beyond the control of the person with disability. One participant with disability described it as a "business looking after someone with a spinal injury" and stressed the importance of the person with disability having a plan and a policy set up for employing support workers [65].…”

Section: Participant Characteristicsmentioning

confidence: 99%

See 4 more Smart Citations

Factors that influence the quality of paid support for adults with acquired neurological disability: scoping review and thematic synthesis

Topping

Douglas

Winkler

2020

Disability and Rehabilitation

View full text Add to dashboard Cite

Purpose: Theoretically, individualised funding schemes empower people with disability (PWD) to choose high quality support services in line with their needs and preferences. Given the importance of support, the aim of this scoping review was to understand the factors that influence the quality of paid disability support for adults with acquired neurological disability. Methods: A comprehensive scoping review of the published literature from 2009-2019 was conducted on five databases: Medline, CINAHL, Embase, PsycINFO and Scopus. Results: Of the 3391 records retrieved, 16 qualitative articles were eligible for review. Thematic synthesis of the findings revealed six key interrelated themes: (1) choice and control, (2) individualised support, (3) disability support worker (DSW) qualities, (4) DSW competence, (5) PWD-DSW relationship, and (6) accessing consistent support. The themes depict factors influencing the quality of paid disability support from the perspective of PWD, close others and DSWs. Conclusions: Although the evidence base is sparse, the factors identified were in line with international rights legislation and policy ideals. The findings can provide insights to PWD hiring and managing support, and facilitate the delivery of quality disability support. Further research is required to understand the interactions between the factors and how to optimise support in practice. ä IMPLICATIONS FOR REHABILITATION The quality of paid disability support is determined by a multitude of interrelated factors influenced by the disability support worker's qualities and competencies, the interaction between the person with disability and the disability support worker, as well as external contextual factors. Optimising choice and control for adults with acquired neurological disability and providing individualised support should be a significant focus for disability support workers. Training modules for disability support workers can be informed by five of the identified themes: (1) choice and control, (2) individualised support, (3) DSW qualities, (4) DSW competence and (5) the relationship between PWD and DSWs.

show abstract

Section: Relationshipsupporting

confidence: 52%

Section: Individualised Supportmentioning

confidence: 98%

Section: Participant Characteristicsmentioning

confidence: 99%

Section: Participant Characteristicsmentioning

confidence: 99%

Section: Participant Characteristicsmentioning

confidence: 99%

See 3 more Smart Citations

Factors that influence the quality of paid support for adults with acquired neurological disability: scoping review and thematic synthesis

Topping

Douglas

Winkler

2020

Disability and Rehabilitation

View full text Add to dashboard Cite

show abstract

The Lived Experience of Interdependence: Support Worker Relationships and Implications for Wider Rehabilitation

Bourke

2021

Brain Impairment

Self Cite

View full text Add to dashboard Cite

Engaging in a meaningful life where one can exercise autonomy has been proposed as a key aim of rehabilitation. Influenced by a neoliberal worldview, this has traditionally been characterised by a pursuit towards individual functional independence in which one completes tasks and activities unassisted. However for many persons, individual functional independence may not be a realistic, prioritised or beneficial goal. Many individuals must learn to work with support workers to exercise choice and control. Such relationships extend beyond a transactional nature and involve many subtle characteristics. In this article, I draw on my lived experience of partnering with support workers to illustrate the complexity of such relationships and how they can enable interdependence to serve as a vehicle to self-determination. I finish with some ideas about what rehabilitation can do to recognise the important role human connections play in facilitating interdependence. Understanding the nature of these relationships is necessary to provide services which value interdependence, supporting people to pursue a meaningful life following impairment.

show abstract

“You’re supporting the whole person”: A grounded theory study of quality support according to close others of people with neurological disability

Topping

Douglas

Winkler

2022

Neuropsychological Rehabilitation

View full text Add to dashboard Cite

Relationships and the transition from spinal units to community for people with a first spinal cord injury: A New Zealand qualitative study

Cited by 13 publications

References 27 publications

Factors that influence the quality of paid support for adults with acquired neurological disability: scoping review and thematic synthesis

Factors that influence the quality of paid support for adults with acquired neurological disability: scoping review and thematic synthesis

The Lived Experience of Interdependence: Support Worker Relationships and Implications for Wider Rehabilitation

“You’re supporting the whole person”: A grounded theory study of quality support according to close others of people with neurological disability

Contact Info

Product

Resources

About