Impact of assistive technology on family caregivers of children with physical disabilities: a systematic review

Nicolson, Amy; Moir, Lois K; Millsteed, Jeannine

doi:10.3109/17483107.2012.667194

Cited by 68 publications

(40 citation statements)

References 13 publications

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“…This qualitative synthesis builds on the findings of previous systematic reviews . Nicolson et al . called for more research describing the impacts on family caregivers of children with physical disabilities.…”

Section: Discussionmentioning

confidence: 99%

“…A recent systematic review of power mobility outcomes for children identified, but did not include, a significant number of qualitative studies relating to the child's and family's perspective, and it was recognized that a separate, more appropriate, analysis was warranted. Three previous systematic reviews on children's use of assistive technologies included only two qualitative studies on power mobility use …”

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The child and family experience of power mobility: a qualitative synthesis

Livingstone

Field

2014

Develop Med Child Neuro

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AIM The aim of this study was to critically synthesize qualitative evidence regarding the child and family experience of power mobility, and to examine how this evidence fits with current theoretical concepts.METHOD Electronic database/hand searches were undertaken in September 2012 and updated in February 2014. The searches were restricted to qualitative studies published in English before February 2014 that included at least one child under the age of 19 with a disability and described an outcome related to the use of power mobility. Inclusion criteria were set a priori. Two reviewers independently screened titles, abstracts, and full-text articles and extracted data. McMaster qualitative review forms were used for quality appraisal. RESULTSOf 259 titles, 21 met inclusion criteria. From 143 codes, 15 second-order themes were developed using constant comparison and analysis. Three overarching themes emerged: power mobility experience promotes developmental change and independent mobility; power mobility enhances social relationships and engagement in meaningful life experiences; and power mobility access and use is influenced by factors in the physical, social, and attitudinal environment.INTERPRETATION This qualitative research provides rich and rigorous evidence supporting the benefits of power mobility for children and families. Numerous factors, which warrant careful consideration, influence power mobility access and use.Power mobility devices, such as powered wheelchairs and ride-on toys, provide efficient, autonomous mobility for children with mobility limitations. [1][2][3][4][5] Power mobility may facilitate independent exploration and participation in everyday activities from a young age. 6 These early exploratory behaviors have a positive impact on overall and psychological development, 7,8 and recent research suggests that children can begin using power mobility devices in infancy.9,10 However, power wheelchairs are not commonly prescribed for children below 3 years of age.11-13 Assistive devices, such as power wheelchairs, may be seen as enablers of function or as a stigma.14 For parents, the psychological and social impact is significant, 15,16 with both positive and negative experiences of power mobility reported. [17][18][19][20][21] In keeping with family-centered care, it is essential that clinicians and researchers set meaningful goals collaboratively, in line with child and family priorities. [22][23][24] A recent systematic review of power mobility outcomes for children 5 identified, but did not include, a significant number of qualitative studies relating to the child's and family's perspective, and it was recognized that a separate, more appropriate, analysis was warranted. Three previous systematic reviews on children's use of assistive technologies [25][26][27] included only two qualitative studies on power mobility use. 18,28 Within the wheeled mobility literature, several models attempt to interpret the many factors that influence power mobility use; however, the validity of these mode...

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

The child and family experience of power mobility: a qualitative synthesis

Livingstone

Field

2014

Develop Med Child Neuro

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“…Included in the stories they relayed were themes of guilt, conflict, exhaustion and a sense of working in isolation, all of which have been reported in previous studies. 48,52 In addition, they expressed concerns about the way therapies intruded into their child's life and prevented the child from doing other activities. They also described their children's responses to receiving therapy.…”

Section: The Practice Of Therapiesmentioning

confidence: 99%

“…[48][49][50][51] Notions of feeling overburdened by the requirements of a therapy regime, and a lack of ongoing training and support, have also been reported. 52 In terms of work within the existing NIHR portfolio, a study 47 funded as part of the Research for Patient Benefit programme has been recently published, which evaluated a training intervention for parents and school staff on postural management. Different models for organising therapy provision were reported, and alternatives to the traditional model of 'unitherapy' teams were presented.…”

Section: Study Limitationsmentioning

confidence: 99%

Therapy interventions for children with neurodisabilities: a qualitative scoping study

Beresford

Clarke

Maddison

2018

Health Technol Assess

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Background Therapy interventions emerged four times in the top 10 research priorities in a James Lind Alliance research prioritisation exercise for children with neurodisabilities (Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, et al. Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership. BMJ Open 2015;5:e006233). The National Institute for Health Research (NIHR) commissioned this study as part of an information-gathering exercise in response to this. Objectives The objectives were to (1) describe the current practice, approaches and schools of thought in relation to physiotherapy, occupational therapy and speech and language therapy for children with neurodisability; (2) explore clinical decision-making; (3) investigate views on outcomes and their measurement, particularly participation as an outcome, that is, the child’s ability to have the opportunity to be involved in life situations and activities (e.g. communication, mobility, interpersonal interactions, self-care, learning and applying knowledge); (4) seek views on the aspects of therapy interventions that have an impact on outcomes; and (5) elicit stakeholder views on research needs and priorities. Design, setting and participants More than 70 professionals (therapists, service leads, paediatricians and education staff) and 25 parents participated in a qualitative interview (either individually or as part of a focus group). Results Professional thinking and models of service delivery are in a state of flux and development. There is a move towards goals-focused, family-centred approaches. Work tends to be highly individualised, with few protocols. Parents are certain of the value of therapies, although they may experience difficulties with provision and may seek (additional) private provision. Therapy interventions are conceived as three components: the therapist, the procedures/equipment, etc., and the wider therapeutic environment. They are believed to be highly complex and poorly understood. Although participation is widely endorsed as a core intervention objective of therapy interventions, its suitability, or appropriateness, as an outcome measure was questioned. Other child and/or parent outcomes were identified as more or equally important. Notions of intermediate outcomes – in terms of body structure/function, and the achievement of activities – were regarded as important and not counter to participation-focused approaches. Among therapists, research on intervention effectiveness was (cautiously) welcomed. A number of methodological challenges were identified. A portfolio of study designs – quantitative and qualitative, experimental and observational – was called for, and which included economic evaluation and clear pathways to impact. Limitations The study was not successful in recruiting children and young people. Further work is required to elucidate the views of this key stakeholder group. Conclusions Therapy interventions are poorly understood. There was strong support, tempered a little by concerns among some about the feasibility of demonstrating impact, for investment in research. Future work The identification of research priorities was a core study objective, and a wide-ranging research agenda was identified. It included ‘foundational’ research into neurodisability, the active components of therapy interventions and the concept of participation. Three areas of evaluation were identified: overall approaches to therapy, service organisation and delivery issues, and the evaluation of specific techniques. Parents regarded evaluations of approaches to therapy (e.g. goals-focused; supporting family-self management) as priorities, along with evaluations of models of service provision. Professionals’ views were broadly similar, with an additional emphasis on methodological research. In terms of specific techniques, there was no shared agreement regarding priorities, with views informed by personal interests and experiences. Funding The NIHR Health Technology Assessment programme.

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“…Moir [11] found insufficient validated, reliable and sensitive assessment tools to measure switch use in children with physical and multiple disabilities. Nicolson et al [12] suggested that greater quantitative research, in the field of assistive technology, is needed which uses reliable and valid outcome measures. Isabelle et al [4] suggests that the reason behind the lack of research using valid and reliable measures is simply a lack of reliable and valid tools in existence which is supported by Silverman and Smith [13] who also identify a lack of valid assessment tools.…”

Section: Introductionmentioning

confidence: 99%

Assistive technology assessment tools for assessing switch use of children: A systematic review and descriptive analysis

Hoppenbrouwers

Stewart

Kernot

2014

TAD

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BACKGROUND: Use of switches enables children with physical and multiple disabilities to mobilise, communicate, play and participate in schooling. A comprehensive and psychometrically sound assessment tool is important to ensure children receive appropriate technology and achieve the best possible outcomes. OBJECTIVE: To systematically review assistive technology assessment tools which assess the switch use of children with physical and multiple disabilities. METHODS: The review was conducted according to PRISMA guidelines. An electronic search of ten databases was performed in February 2013. Assessment tools were included if they met three key eligibility criteria: 1) the tool assessed the assistive technology needs of children with physical or multiple disabilities, 2) the tool could be applied to assess children's ability to use a switch, 3) the article was published in English in a peer reviewed journal. RESULTS: From eight articles included, six different assessment tools were reviewed for psychometric properties and compared to recommended content from background literature. From this review, it was found there are insufficient validated and reliable assessment tools to assess the switch use of children. CONCLUSIONS: A comprehensive and sensitive tool, with adequate psychometric testing, is required to assess the switch use of children with physical and multiple disabilities.

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Impact of assistive technology on family caregivers of children with physical disabilities: a systematic review

Abstract: Evidence suggests that AT has a positive impact on children with physical impairments and their caregivers. Future studies in this area could include valid and reliable outcome measures of AT use and the psychological impacts of AT on caring for a child with physical impairments.

Cited by 68 publications

References 13 publications

The child and family experience of power mobility: a qualitative synthesis

The child and family experience of power mobility: a qualitative synthesis

Therapy interventions for children with neurodisabilities: a qualitative scoping study

Assistive technology assessment tools for assessing switch use of children: A systematic review and descriptive analysis

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