Predictors of care-giver stress in families of preschool-aged children with developmental disabilities

Background This study examined the predictors, mediators and moderators of parent stress in families of preschool-aged children with developmental disability. Method One hundred and five mothers of preschool-aged children with developmental disability completed assessment measures addressing the key variables. Results Analyses demonstrated that the difficulty parents experienced in completing specific caregiving tasks, behaviour problems during these caregiving tasks, and level of child disability, respectively, were significant predictors of level of parent stress. In addition, parents’ cognitive appraisal of care-giving responsibilities had a mediating effect on the relationship between the child’s level of disability and parent stress. Mothers’ level of social support had a moderating effect on the relationship between key independent variables and level of parent stress. Conclusions Difficulty of care-giving tasks, difficult child behaviour during care-giving tasks, and level of child disability are the primary factors which contribute to parent stress. Implications of these findings for future research and clinical practice are outlined.

Common variance in amplitude envelope perception tasks and their impact on phoneme duration perception and reading and spelling in Finnish children with reading disabilities

Our goal was to investigate auditory and speech perception abilities of children with and without reading disability (RD) and associations between auditory, speech perception, reading, and spelling skills. Participants were 9-year-old, Finnish-speaking children with RD (N = 30) and typically reading children (N = 30). Results showed significant group differences between the groups in phoneme duration discrimination but not in perception of amplitude modulation and rise time. Correlations among rise time discrimination, phoneme duration, and spelling accuracy were found for children with RD. Those children with poor rise time discrimination were also poor in phoneme duration discrimination and in spelling. Results suggest that auditory processing abilities could, at least in some children, affect speech perception skills, which in turn would lead to phonological processing deficits and dyslexia.

Individuals with mental disabilities: perceptions of work limitations

This research investigates the perceptions that individuals with mental illnesses have about the employment experience as a whole. Survey data from 72 respondents with mental disabilities were used to identify areas of perceived work limitations. Comparisons regarding employee work performance were made between eleven individuals with mental disabilities and their supervisors. Functional limitations identified by respondents with mental disabilities and the characteristic symptoms set forth in the Diagnostic and Statistical Manual of Mental Disorders were compared. Overall findings showed that individuals with mental disabilities in this study had problems in the areas of judgment, initiative, interacting and rapport with co-workers and supervisors, frustration tolerance and coping with job stress, and adapting to changes at work. Comparison of identified work task difficulties with diagnostic criteria indicate active symptomatology to have an effect on job performance. Recommendations regarding occupational therapy assessment approaches and roles to facilitate ADA implementation are presented.

Children with Learning Disabilities and Challenging Behaviour: Relationship between Parents and Professionals

This multi-perspectival Interpretive Phenomenological Analysis (IPA) study explored how people in the ‘networks of concern’ talked about how they tried to make sense of the challenging behaviours of four children with severe learning disabilities. The study also aimed to explore what affected relationships between people. The study focussed on 4 children through interviewing their mothers, their teachers and the Camhs Learning Disability team members who were working with them. Two fathers also joined part of the interviews. All interviews were conducted separately using a semi-structured approach. IPA allowed both a consideration of the participant’s lived experiences and ‘objects of concern’ and a deconstruction of the multiple contexts of people’s lives, with a particular focus on disability. The analysis rendered five themes: the importance of love and affection, the difficulties, and the differences of living with a challenging child, the importance of being able to make sense of the challenges and the value of good relationships between people. Findings were interpreted through the lens of CMM (Coordinated Management of Meaning), which facilitated a systemic deconstruction and reconstruction of the findings. The research found that making sense of the challenges was a key concern for parents. Sharing meanings were important for people’s relationships with each other, including employing diagnostic and behavioural narratives. The importance of context is also highlighted including a consideration of how societal views of disability have an influence on people in the ‘network of concern’ around the child. A range of systemic approaches, methods and techniques are suggested as one way of improving services to these children and their families. It is suggested that adopting a ‘both/and’ position is important in such work - both applying evidence based approaches and being alert to and exploring the different ways people try and make sense of the children’s challenges. Implications for practice included helping professionals be alert to their constructions and professional narratives, slowing the pace with families, staying close to the concerns of families and addressing network issues.

Children with intellectual disabilities’ perceptions of their participation in activities in everyday life – a pilot study : A minor field study conducted in Ethiopia

Background: Children with disabilities living in low and middle income countries’ perceptions of participation are not shown in research. These perceptions are important for providing appropriate interventions. Aim: To describe how children aged 8-12 with an intellectual disability living in Ethiopia perceive their situation regarding participation in activities in everyday life. Method: A descriptive design with a quantitative approach was used. The sample was gathered using consecutive sampling. Fifteen structured interviews were conducted, using “Picture my participation,” an instrument under development. Analyses were made using SPSS Statistics and Microsoft Excel. Results: The children perceived that they participated in activities in everyday life. There was a broad variation in the activities the children prioritized as most important. On a group level, they were very involved in these activities. The majority did not experience any barriers to perform these activities. Conclusions: The perceptions of the majority of the children were that they were involved in daily activities. They did not experience any barriers to participation. The results should be read with caution and generalization is not possible, due to the sample characteristics and that the instrument is under development.

Assessment of visual function in children with multiple disabilities: two case studies of children with cerebral palsy

Purpose: a) multiply handicapped children have a high incidence of disorders affecting the visual system; b) assessment and management of visual disorders in this group of children presents a complex challenge; c) this study describes the results of visual function assessment in two children with neurological disability over a one-year period.

Understanding and validating accelerometry as a measure of physical activity in children with intellectual disabilities

Background Physical activity in children with intellectual disabilities is a neglected area of study, which is most apparent in relation to physical activity measurement research. Although objective measures, specifically accelerometers, are widely used in research involving children with intellectual disabilities, existing research is based on measurement methods and data interpretation techniques generalised from typically developing children. However, due to physiological and biomechanical differences between these populations, questions have been raised in the existing literature on the validity of generalising data interpretation techniques from typically developing children to children with intellectual disabilities. Therefore, there is a need to conduct population-specific measurement research for children with intellectual disabilities and develop valid methods to interpret accelerometer data, which will increase our understanding of physical activity in this population. Methods Study 1: A systematic review was initially conducted to increase the knowledge base on how accelerometers were used within existing physical activity research involving children with intellectual disabilities and to identify important areas for future research. A systematic search strategy was used to identify relevant articles which used accelerometry-based monitors to quantify activity levels in ambulatory children with intellectual disabilities. Based on best practice guidelines, a novel form was developed to extract data based on 17 research components of accelerometer use. Accelerometer use in relation to best practice guidelines was calculated using percentage scores on a study-by-study and component-by-component basis. Study 2: To investigate the effect of data interpretation methods on the estimation of physical activity intensity in children with intellectual disabilities, a secondary data analysis was conducted. Nine existing sets of child-specific ActiGraph intensity cut points were applied to accelerometer data collected from 10 children with intellectual disabilities during an activity session. Four one-way repeated measures ANOVAs were used to examine differences in estimated time spent in sedentary, moderate, vigorous, and moderate to vigorous intensity activity. Post-hoc pairwise comparisons with Bonferroni adjustments were additionally used to identify where significant differences occurred. Study 3: The feasibility on a laboratory-based calibration protocol developed for typically developing children was investigated in children with intellectual disabilities. Specifically, the feasibility of activities, measurements, and recruitment was investigated. Five children with intellectual disabilities and five typically developing children participated in 14 treadmill-based and free-living activities. In addition, resting energy expenditure was measured and a treadmill-based graded exercise test was used to assess cardiorespiratory fitness. Breath-by-breath respiratory gas exchange and accelerometry were continually measured during all activities. Feasibility was assessed using observations, activity completion rates, and respiratory data. Study 4: Thirty-six children with intellectual disabilities participated in a semi-structured school-based physical activity session to calibrate accelerometry for the estimation of physical activity intensity. Participants wore a hip-mounted ActiGraph wGT3X+ accelerometer, with direct observation (SOFIT) used as the criterion measure. Receiver operating characteristic curve analyses were conducted to determine the optimal accelerometer cut points for sedentary, moderate, and vigorous intensity physical activity. Study 5: To cross-validate the calibrated cut points and compare classification accuracy with existing cut points developed in typically developing children, a sub-sample of 14 children with intellectual disabilities who participated in the school-based sessions, as described in Study 4, were included in this study. To examine the validity, classification agreement was investigated between the criterion measure of SOFIT and each set of cut points using sensitivity, specificity, total agreement, and Cohen’s kappa scores. Results Study 1: Ten full text articles were included in this review. The percentage of review criteria met ranged from 12%−47%. Various methods of accelerometer use were reported, with most use decisions not based on population-specific research. A lack of measurement research, specifically the calibration/validation of accelerometers for children with intellectual disabilities, is limiting the ability of researchers to make appropriate and valid accelerometer use decisions. Study 2: The choice of cut points had significant and clinically meaningful effects on the estimation of physical activity intensity and sedentary behaviour. For the 71-minute session, estimations for time spent in each intensity between cut points ranged from: sedentary = 9.50 (± 4.97) to 31.90 (± 6.77) minutes; moderate = 8.10 (± 4.07) to 40.40 (± 5.74) minutes; vigorous = 0.00 (± .00) to 17.40 (± 6.54) minutes; and moderate to vigorous = 8.80 (± 4.64) to 46.50 (± 6.02) minutes. Study 3: All typically developing participants and one participant with intellectual disabilities completed the protocol. No participant met the maximal criteria for the graded exercise test or attained a steady state during the resting measurements. Limitations were identified with the usability of respiratory gas exchange equipment and the validity of measurements. The school-based recruitment strategy was not effective, with a participation rate of 6%. Therefore, a laboratory-based calibration protocol was not feasible for children with intellectual disabilities. Study 4: The optimal vertical axis cut points (cpm) were ≤ 507 (sedentary), 1008−2300 (moderate), and ≥ 2301 (vigorous). Sensitivity scores ranged from 81−88%, specificity 81−85%, and AUC .87−.94. The optimal vector magnitude cut points (cpm) were ≤ 1863 (sedentary), ≥ 2610 (moderate) and ≥ 4215 (vigorous). Sensitivity scores ranged from 80−86%, specificity 77−82%, and AUC .86−.92. Therefore, the vertical axis cut points provide a higher level of accuracy in comparison to the vector magnitude cut points. Study 5: Substantial to excellent classification agreement was found for the calibrated cut points. The calibrated sedentary cut point (ĸ =.66) provided comparable classification agreement with existing cut points (ĸ =.55−.67). However, the existing moderate and vigorous cut points demonstrated low sensitivity (0.33−33.33% and 1.33−53.00%, respectively) and disproportionately high specificity (75.44−.98.12% and 94.61−100.00%, respectively), indicating that cut points developed in typically developing children are too high to accurately classify physical activity intensity in children with intellectual disabilities. Conclusions The studies reported in this thesis are the first to calibrate and validate accelerometry for the estimation of physical activity intensity in children with intellectual disabilities. In comparison with typically developing children, children with intellectual disabilities require lower cut points for the classification of moderate and vigorous intensity activity. Therefore, generalising existing cut points to children with intellectual disabilities will underestimate physical activity and introduce systematic measurement error, which could be a contributing factor to the low levels of physical activity reported for children with intellectual disabilities in previous research.

Factors contributing to defaulting scheduled therapy sessions by caregivers of children with congenital disabilities

Background Defaulting scheduled rehabilitation therapy may result in increased adverse outcomes such as permanent disability and increased healthcare costs. Concomitantly, there is evidence to suggest that early and continued rehabilitation of children with congenital disabilities can improve outcomes significantly. This study was conducted to determine factors contributing to caregivers’ defaulting scheduled rehabilitation therapy sessions. Methods A descriptive cross sectional study was carried out at Chitungwiza Central Hospital, a tertiary facility offering in and outpatient rehabilitation services in Zimbabwe. Caregivers of children who had congenital disabilities (N=40) and who had a history of defaulting treatment but were available during the data collection period responded to an interviewer administered questionnaire. Data were analysed for means and frequencies using STATA 13. Results Factors that contributed to caregivers defaulting scheduled therapy included economic constraints (52%), child related factors (43%), caregiver related factors (42%), service centred factors (30%) and psychosocial factors (58%). Majority of the caregivers (98%) were motivated to attend therapy by observable improvements in their children. Other motivators were incentives given in the rehabilitation department (45%), availability of rehabilitation personnel to provide the required services (48%) and psychosocial support from fellow caregivers, families and the rehabilitation staff (68%). Although all the caregivers could not distinguish occupational therapy from physiotherapy services they all reported that therapy was important. Conclusions A combination of psychosocial, economic, child centred and service centred factors contributed to caregivers defaulting scheduled therapy. Interventions that may potentially improve caregiver attendance to scheduled therapy include community outreach services, efficient rehabilitation service provision at the hospitals, and facilitation of income generating programmes for caregivers.

Family as the Promoter of Independence Skills in Children with Motor Disabilities

This study developed an individualized proposal to promote, from the family context, the independence of two four-year-old children with motor disabilities. The proposal aimed at helping mothers and fathers to promote different skills within the family context. The results of this study revealed that when the families of children with disabilities are oriented, it is easier for them to start processes that otherwise would be postponed. As a result, it is recommended to create proposals to support the parents and help them to build their own family-growth processes and develop independence living skills in their children with motor disabilities.

A comparison of two procedures for increasing spontaneous requests in children with autism

The missing-item format and interrupted behaviour chain strategy have been used to increase spontaneous requests among children with developmental disabilities, but their relative effectiveness has not been compared. The present study compared the extent to which each strategy evoked spontaneous requests and challenging behaviour in three children with autism. Sessions where a needed item was withheld (missing-item format) were compared to sessions involving the removal of a needed item (interrupted behaviour chain strategy). Comparisons were conducted across three activates in an alternating treatments design. Both strategies evoked spontaneous requests with no significant difference in effectiveness. Few differences were obtained in the amount of challenging behaviour evoked but the two conditions, although a moderate inverse relationship between spontaneous requesting and challenging behaviour was observed. The results suggest that theses two procedures yield similar outcomes. Concurrent use of both strategies may enable teachers to create a greater number of opportunities for requesting.