Brigit Mirfin-Veitch

Association between motor functioning and leisure participation of children with physical disability: an integrative review

The aim of this integrative review is to synthesize the evidence of association between motor functioning and leisure participation of children with physical disability.

Injuries and falls among adults with intellectual disability: A prospective New Zealand cohort study

Abstract Background Falls and fall-related injuries are a problem for many adults with intellectual disability. Most previous studies have collected falls data retrospectively, using organisational incident reports. We developed tools to specifically collect fall-related data and potential fall risk data. This paper reports on the development of these tools and the fall-related data collected in 3 prospective studies. Method Consultations with 33 stakeholders representing 29 organisations and 5 focus group discussions were used to develop 2 tools for gathering information. Studies in 3 cities applied the tools to explore their acceptability, utility, and cultural appropriateness. Results Two simple tick box forms were developed; both were easy and quick to complete. In the studies, 135 individuals participated (70 males, 65 females, aged 45 [SD = 11] years), of whom 27% experienced a fall; 39% of these resulted in an injury. Injuries were mostly bruises (30%) and grazes (28%), particularly to the facial area (42%). The 6-month period prevalence of falls was 0.76%. Most falls occurred indoors and during the daytime. Individuals appeared more likely to experience a fall if they had had previous falls and/or fractures, epilepsy, orthopaedic-related conditions, and problems with gait and balance. Conclusion A robust process ensured the acceptability, utility, face and content validity, and cultural safety of our data collection tools. Falling is a serious problem for many people with intellectual disability, but the reasons for falling appear multifaceted and complex, complicating the development of fall prevention programs.

Prevention of falls for adults with intellectual disability (PROFAID): a feasibility study

Abstract Purpose: A novel physiotherapy intervention for people with intellectual disability (ID) to improve balance was developed and evaluated in a feasibility study which quantitatively assessed potential benefits on measures of balance, gait and activity participation, and qualitatively explored its acceptability, utility and feasibility. Methods: Participants were 27 adults with mild to profound ID (mean age 53 years SD 10.9). We used a mixed methods approach: an uncontrolled before–after study (data analysed with the related samples sign test) and a qualitative interview evaluation (data analysed with the general inductive approach). Balance, gait and participation were assessed at baseline and 6 months after introduction of the physiotherapy intervention with four standardised measures and two questionnaires. Results: Appropriate exercises and a physical activity could be found for all participants, irrespective of the level of ID, although for many this required a high level of assistance from support staff. Only the Balance Scale for ID changed significantly by a median score of 2 (95% CI = 0.00–2.50, p = 0.04). No other outcomes changed significantly. Four themes emerged: “Understanding the intervention”; “Routine and reality”; “Remembering what I have to do” and “What happens beyond the study itself”? Conclusions: The findings provide some evidence for the benefit, acceptability, utility and feasibility of the intervention justifying further evaluation. Implications for Rehabilitation Falling is a frequent and serious problem for many adults with intellectual disability. Two to three exercises targeted at increasing lower limb strength and challenging balance, performed each day as part of daily routine may help improve balance in adults with intellectual disability. The importance of exercising needs to be stressed to those who support adults with intellectual disability to encourage ongoing adherence.

“I do like the activities which I can do…” Leisure participation experiences of children with movement impairments

Abstract Aim: To explore in depth the leisure participation experiences of children with movement impairments. Methods: We used Interpretative Phenomenological Analysis approach to interpret and understand the experiences of 22 children with movement impairments, aged between 6 and 12 years. Children expressed their views through flexible child-centred methods of data collection that allowed the children to draw, paint, use stickers, and demonstrate their leisure activities and equipment while communicating about their experiences. Results: Children participated in leisure activities of their choice, and expressed positive experience of fun, challenge, independence and achievement. The choice of activities depended on a combination of the motor functioning of the individual child, inspiration and support from families, friends and health professionals, as well as the possibility of adaptations and availability of community programmes. At times children felt disappointed and avoided some activities due to associated negative experience such as injury, fear, non-inclusion and the difficulty they had experienced in adapting and performing certain activities. Conclusion: Families, therapists and community service providers such as disability organisations could enhance leisure participation experiences by suggesting and creating opportunities that could increase children’s choices of leisure activities. Implications for rehabilitation Children’s choice of activities, places and friends is important for positive experiences of fun, achievement, challenge, independence and motivation in leisure participation. Families and health professionals could assist children make appropriate choices for leisure activities that depends on factors such as motor abilities, adaptations and availability of activities in the community. In the community, widening the options for leisure activities such as non-competitive adaptive sports and indoor sports for children with variable levels of movement impairment could improve leisure participation experiences.

Increasing the participation of women with intellectual disabilities in women's health screening: a role for disability support services

ABSTRACTNew Zealand women with intellectual disabilities do not participate in population-based breast and cervical screening programs to the same extent as other women. This article reports on one...

A Child-centered Method of Interviewing Children with Movement Impairments

ABSTRACT Aims: Children are increasingly included in qualitative research and new methods for interviewing children are emerging. The aim of this article is to describe and discuss the strategies of a child-centered method of data collection for interviewing children with movement impairments to explore their leisure participation experiences. Methods: A study was conducted using an Interpretative Phenomenological Approach (IPA) to explore leisure participation experiences of children with movement impairments aged 6 to 12 years. Various strategies, guided by children, were used to facilitate childrens active involvement in the interview process. Results: Twenty-two children (mean age 8.7 years) participated in the interview study, most of them in the presence of their parents or guardian (18 children) and some of them (9 children) with their siblings present. Children enjoyed and were actively engaged in the interview process. Along with talking, 19 children did drawings, 5 children used stickers, 4 children played quiet games, six children shared pictures of their leisure activities, and 16 children physically demonstrated some of their leisure activities, environment, and equipment. Conclusions: A wide range of data collection strategies facilitated children to communicate their leisure participation experiences and to represent childrens views without being overly influenced by parental views.

Challenging Methodological and Ethical Conventions to Facilitate Research That Is Responsive to People with Learning Disabilities

People with learning disabilities continue to be denied the opportunity to be actively engaged in the production of research. In this chapter, we draw on two studies in which we attempted to be inclusive of people with learning disabilities. The first study explored experiences of women with learning disabilities in relation to mental health; the second study delivered an intervention designed to reduce falls for people with learning disabilities. We address four aspects of the research process in both studies that highlighted the importance of ethical considerations that take into account inclusivity, recruitment, informed consent, communicating research-related tasks, and interview approaches. We outline how relational ethics should be central to efforts to be responsive in research that is inclusive of people with learning disabilities.