There is little evidence regarding the efficacy of interventions to prepare adolescents with congenital heart disease (CHD) to enter adult care. The goal of this study was to evaluate the impact of a nurse-led transition intervention on... more
There is little evidence regarding the efficacy of interventions to prepare adolescents with congenital heart disease (CHD) to enter adult care. The goal of this study was to evaluate the impact of a nurse-led transition intervention on lapses between pediatric and adult care. A cluster randomized clinical trial was conducted of a nurse-led transition intervention for 16- to 17-year-olds with moderate or complex CHD versus usual care. The intervention group received two 1-h individualized sessions targeting CHD education and self-management skills. The primary outcome was excess time to adult CHD care, defined as the interval between the final pediatric and first adult cardiology appointments, minus the recommended time interval, analyzed by using Cox proportional hazards regression accounting for clustering. Secondary outcomes included scores on the MyHeart CHD knowledge survey and the Transition Readiness Assessment Questionnaire. A total of 121 participants were randomized to rec...
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This prospective, longitudinal cohort study examined longitudinal patterns of early development in Canadian children born late preterm. A convenience sample of 82 mothers and their healthy, singleton, late preterm children participated.... more
This prospective, longitudinal cohort study examined longitudinal patterns of early development in Canadian children born late preterm. A convenience sample of 82 mothers and their healthy, singleton, late preterm children participated. Mothers completed the Ages and Stages Questionnaires at 4, 8, and 18 months corrected age. Concerns were most commonly reported in the communication and gross motor domains, especially early in development. The proportion of children scoring below the referral cut-off in at least one domain at 4, 8, and 18 months was, respectively, 25.6, 25.6, and 14.6%. Only two children (2.4%) scored below referral cut-off in at least one domain at all three time points. At ages four and eight months, the late preterm sample had significantly lower communication and gross motor scores than the Ages and Stages Questionnaires normative sample. At age four months, there was also a significant difference on the fine motor domain. There were no significant differences a...
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Parenting stress has been linked to child development issues in early preterm infants, but less is known about its effects on development in infants born late preterm. We examined relationships between parenting stress of 108 mothers and... more
Parenting stress has been linked to child development issues in early preterm infants, but less is known about its effects on development in infants born late preterm. We examined relationships between parenting stress of 108 mothers and 108 fathers and development of late preterm infants born at 34 0/7 to 36 6/7 weeks gestation. At 4 months corrected age, mothers and fathers completed the Parenting Stress Index (PSI-3); mothers were primary caregivers in almost all families and completed the Ages and Stages Questionnaire (ASQ-2) on child development. Mothers reported significantly more stress than fathers on the PSI-3 Parent Domain. PSI-3 subscale scores from the Child Domain were significant predictors of mother-reported infant development as measured by the ASQ-2 in regression models: Reinforces Parent predicted Gross Motor, Mood predicted Communication, and Acceptability predicted Communication, Fine Motor, Problem Solving, and Personal -Social development scale scores. Experiences of parenting stress differed for mothers and fathers. Further research is required on specific dimensions of parenting stress related to development of late preterm infants.
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Engagement in meaningful activities is essential to development and is often reduced in children with autism spectrum disorder (ASD) who have limited engagement in activities or relationships. A multiple-baseline design was used with 7... more
Engagement in meaningful activities is essential to development and is often reduced in children with autism spectrum disorder (ASD) who have limited engagement in activities or relationships. A multiple-baseline design was used with 7 children with ASD ages 4–8 yr to assess the effect of including a horse in occupational therapy intervention on task engagement. The children showed improvements in engagement. Including horses in occupational therapy sessions may be a valuable addition to conventional treatments to increase task engagement of children with ASD. Factors related to the environment, therapeutic strategies, and individual participation need to be considered in understanding why this intervention may be effective and developing a theoretical basis for implementation.
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To determine (a) the essential components of social participation for preschool children with Autism Spectrum Disorder (ASD) using stakeholders' perspectives and (b) the facilitators and barriers experienced in promoting social... more
To determine (a) the essential components of social participation for preschool children with Autism Spectrum Disorder (ASD) using stakeholders' perspectives and (b) the facilitators and barriers experienced in promoting social participation. A mixed-methods, web-based survey utilizing the International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY) taxonomy was circulated across Canada through purposeful snowball sampling. Frequency analysis of the combined responses of 74 stakeholders revealed the most essential components of social participation were: (a) behavior management, (b) social interactions, and (c) various types of play. Further, content analysis revealed that stakeholders used intrinsic motivation strategies and contingency management to facilitate social participation. Stakeholders reported that the purpose of social participation was to engage the child in fun, enjoyable social activities that developed relationships between the child and peers and created a sense of belonging in the community.
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To study the effectiveness of cognitive orientation to daily occupational performance (CO-OP) to teach motor skills to youth with intellectual disabilities. Six youth aged 12 to 19 years participated in this study. A multiple baseline... more
To study the effectiveness of cognitive orientation to daily occupational performance (CO-OP) to teach motor skills to youth with intellectual disabilities. Six youth aged 12 to 19 years participated in this study. A multiple baseline design was employed to evaluate distance and time cycled, and a pre-post-follow-up design was used to evaluate the effect on cycling skills mastered, cycling performance, and parent satisfaction. At follow-up, 5 of the 6 youth rode their 2-wheeled bicycles over 100 m in their communities (range, 103-1400 m) and demonstrated improved cycling skills and parent satisfaction. The skills acquired by youth with Down syndrome using a CO-OP approach exceeded what has been reported in the literature. CO-OP offers a promising alternative to existing approaches for teaching 2-wheeled cycling to youth with Down syndrome.
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Children with limited gross motor and manual abilities have fewer opportunities to engage in free play. We investigated the effect of a robotic intervention on the playfulness of children with cerebral palsy (CP). We used a partially... more
Children with limited gross motor and manual abilities have fewer opportunities to engage in free play. We investigated the effect of a robotic intervention on the playfulness of children with cerebral palsy (CP). We used a partially nonconcurrent multiple baseline design with four children and their mothers. Children were classified in level IV or V on the Gross Motor Function and Manual Ability Classification Systems. The intervention was the availability of an adapted Lego robot during a 15-min free play session between the child and mother. There were two sessions per week for about 14 weeks. Playfulness was measured using the Test of Playfulness. Statistical comparisons using the 2 SD band and X-moving range chart methods revealed that all the children's levels of playfulness increased significantly while they played with the robot. Comparison of baseline and follow-up phase indicated that three children had retention of improved level of playfulness. Play with adapted Lego robots increased the level of playfulness in all four children during free play with their mothers. The findings have implications for providing children with limitations in motor abilities opportunities for free play with family and friends.
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The population of young adults with congenital heart disease (CHD) or a heart transplant (HTx) is growing rapidly. These survivors require lifelong cardiology care and must assume self-management responsibilities with respect to their... more
The population of young adults with congenital heart disease (CHD) or a heart transplant (HTx) is growing rapidly. These survivors require lifelong cardiology care and must assume self-management responsibilities with respect to their health. Accordingly, we sought to assess psychosocial maturity and validity of the Transition Readiness Assessment Questionnaire (TRAQ) in this population. The study was designed as a cross-sectional observational study. The study was set at tertiary-care pediatric and adult cardiology clinics in Edmonton and Toronto, Canada. The patients were 18- to 25-year-olds with moderate or complex CHD or a HTx in childhood. Participants completed validated instruments including the TRAQ, Erickson's Psychosocial Stage Inventory (EPSI), and Kenny's Parental Attachment Questionnaire (PAQ). We enrolled 188 participants (41% women), 109 (58%) having moderate CHD, 64 (34%) complex CHD, and 15 (8%) with a HTx. Mean age for those followed in a pediatric clinic w...
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Fathers of late-preterm (34-36 weeks' gestation) infants may experience challenges in parenting. Late-preterm infants are more irritable and less responsive in interactions. The unexpected... more
Fathers of late-preterm (34-36 weeks' gestation) infants may experience challenges in parenting. Late-preterm infants are more irritable and less responsive in interactions. The unexpected early birth of an infant may negatively affect fathers' cognitive and emotional experiences. The Father-Infant Interaction Program (FIIP) is a video-modeled play intervention that aims to increase fathers' sensitivity and responsiveness to infant cues. Using data from a larger randomized controlled trial (RCT) to evaluate FIIP, the purpose of the present study was to explore the experiences of first-time fathers of late-preterm infants and their perceptions of the intervention. We conducted semistructured qualitative interviews with 85 fathers of 8-month-old infants during the outcome home visit for the RCT and thematically analyzed data. Three main themes about fathers' experiences emerged: Fathers believed they had the "best job in the world," yet saw fathering as the "biggest job ever." Fathers viewed fatherhood as an opportunity for personal growth and reflected on how their lives had changed since the arrival of their infant. Fathers in the intervention and comparison groups liked the convenience of the home visits and validation of their role as a father. Fathers in the intervention group liked the tailored feedback about play.
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To examine the relationships between adults' childhood experiences in their family of origin, current level of marital support, and quality of parenting interactions, 66 mothers and fathers were observed individually interacting... more
To examine the relationships between adults' childhood experiences in their family of origin, current level of marital support, and quality of parenting interactions, 66 mothers and fathers were observed individually interacting with their infants during home visits using a standardized observational measure (Nursing Child Assessment Teaching Scale). Parents completed questionnaires on marital support (Dyadic Adjustment Scale) and on childhood experiences in the family of origin (Parental Acceptance-Rejection Questionnaire). For mothers, there was no relationship between childhood experiences and the quality of parenting interactions. For fathers, the relationship varied as a function of marital support. Fathers who perceived less positive childhood experiences but who had more optimal levels of marital support were predicted to have more responsive parenting interactions.
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School-aged children with Autism Spectrum Disorders (ASD) experience significant difficulty with peer interaction. Research to identify the most effective strategies to address this difficulty has increased but more evidence is needed.... more
School-aged children with Autism Spectrum Disorders (ASD) experience significant difficulty with peer interaction. Research to identify the most effective strategies to address this difficulty has increased but more evidence is needed. Cognitive behavior therapy (CBT), which focuses on changing how a person thinks about social situations as well as how he behaves, is a promising approach. This study evaluated the efficacy of a 15 week CBT-based social skills intervention for boys aged 10–12 years diagnosed with an ASD. Boys with average or better IQ and receptive language skills were randomly assigned to either a control (n=8) or intervention condition (n=7). During intervention, boys attended weekly 2h long group sessions focusing on self-monitoring skills, social perception and affective knowledge, conversation skills, social problem-solving, and friendship management skills. Comparison of the outcomes using repeated measures analyses indicated that boys receiving the intervention scored significantly better on measures of social perception, peer interaction, and social knowledge than boys who had not received intervention. There were no differences on general measures of socialization. The manualized intervention used in this study shows promise but replication with larger samples is needed.
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In this longitudinal study, forty-three Canadian 10-year-olds, 20 born preterm without significant health problems and 23 born at term, were compared. Cognitive development was measured by the Wechsler Intelligence Scale for Children-III.... more
In this longitudinal study, forty-three Canadian 10-year-olds, 20 born preterm without significant health problems and 23 born at term, were compared. Cognitive development was measured by the Wechsler Intelligence Scale for Children-III. Language development was measured by the Clinical Evaluation of Language Fundamentals-3 (CELF-3) and language used in a 5 minute interview. The children born preterm had subtle delays. They scored significantly lower on Performance IQ and the CELF-3. The subtests on which they had lower scores appear to require visual-spatial skills. Early intervention focusing on parent behaviours that encourage language development and early screening for delays in visual-spatial skills may be useful.
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Research Interests: Communication, Education, Autism, Intelligence, Language, and 15 moreLanguage disorders, Humans, Child, Female, Male, Personal Construct Theory, Interpersonal Relations, Autism Spectrum Disorder, Children and Adolescents, Peer group, Age Factors, Asperger Syndrome, Linguistic Competence, Nino, and Autistic disorder
Through thematic analysis of interviews, we explored parents' perceptions of their... more
Through thematic analysis of interviews, we explored parents' perceptions of their child's behaviors and their own parenting. A purposive sample of four mothers and four fathers who reported behavior problems for their 7(1/2) year-old-child was selected from a larger study. Parents appraised their child positively despite episodic behavior problems, and described parenting in the context of financial difficulties, marital conflict, chronic illness, lack of support for parenting, and abuse in the parent's family of origin. Data suggest a need for timely mental health services to assist parents with managing their child's behaviors within the context of the family's situation.
Research Interests: Nursing, Parenting, Fathers, Humans, Child, and 7 moreFemale, Male, Mothers, Middle Aged, Adult, Parent‐child Relations, and Child behavior disorders
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Two observational studies of verbal, high-functioning children and adolescents with autism; nonautistic, behaviorally disordered youngsters of equivalent verbal skills and chronological age; and verbal age-matched normally developing... more
Two observational studies of verbal, high-functioning children and adolescents with autism; nonautistic, behaviorally disordered youngsters of equivalent verbal skills and chronological age; and verbal age-matched normally developing students during integrated summer day camps are reported. In the first study, observations were made of spontaneous peer interaction and play over the course of 2 weeks of day camp. The eight autistic subjects were consistently more likely to not be interacting and less likely to be engaged in any purposeful activity than the 16 other children. During the 2 weeks, time interacting and purposeful activity increased overall. In the second study, the quality of spontaneous peer-directed initiations was observed during free time in similar day camps the following summer. The 11 autistic children and adolescents produced fewer initiations than did the 20 other children and were less likely to smile or coordinate several behaviors with eye contact during an i...
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Factors influencing quality of life for persons with Asperger syndrome are not yet understood. Men, ages 18 to 21, completed the World Health Organization Quality Of Life measure, the Perceived Support Network Inventory, and a... more
Factors influencing quality of life for persons with Asperger syndrome are not yet understood. Men, ages 18 to 21, completed the World Health Organization Quality Of Life measure, the Perceived Support Network Inventory, and a semi-structured interview. Asperger syndrome affects quality of life beyond the obvious social impact. The 12 men with Asperger syndrome reported a significantly lower social and physical quality of life than did the 13 men in the control group. Education, living arrangements, and number of friends were remarkably similar between groups. Those with Asperger syndrome had less positive employment experiences and showed more preference for solitary activities. Interventions need to be based on a holistic model.
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The Family Resilience Study was initiated based on increasing concern that children who have survived life-saving heart surgery early in life are presenting new challenges to our health and education system that, when unmet, are adding to... more
The Family Resilience Study was initiated based on increasing concern that children who have survived life-saving heart surgery early in life are presenting new challenges to our health and education system that, when unmet, are adding to the stress of parents and families. Although Alberta has a rich array of early intervention services, community rehabilitation and educational support services, and financial support systems for children with disabilities and their parents/families, there has been a mismatch between these services and the needs of children with complex congenital heart disease (CHD). The medical needs of these children, who undergo three major heart surgeries, endure prolonged hospitalizations and repeated invasive procedures, understandably need to trump their developmental needs in the early years. By school entry, not only are some of these children having difficulty learning, they are also experiencing emotional and behavioural challenges. Gaining in-depth unde...
Adolescents with autism spectrum disorder spend considerable time in media activities. Parents play an important role in shaping adolescents' responses to media. This study explored the mediation strategies that parents of adolescents... more
Adolescents with autism spectrum disorder spend considerable time in media activities. Parents play an important role in shaping adolescents' responses to media. This study explored the mediation strategies that parents of adolescents with autism spectrum disorder used to manage television and video game use, factors associated with their use of different strategies, and whether mediation strategies changed over time. A secondary purpose was to examine whether parents applied different mediation strategies to adolescents with autism spectrum disorder versus siblings, and the factors that created stress related to managing media use. Parents of 29 adolescents with autism spectrum disorder and 16 siblings completed questionnaires at two time points. Parents most frequently supervised their television viewing by watching it with the adolescents, and used restrictive strategies to regulate their videogaming. Parents used similar strategies for siblings, but more frequently applied r...
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Mothers and fathers of 54 term infants and 49 preterm infants were observed individually interacting with their infant in the home during a structured task (Nursing Child Assessment Teaching Scale) when the child was 3 and 12 months old.... more
Mothers and fathers of 54 term infants and 49 preterm infants were observed individually interacting with their infant in the home during a structured task (Nursing Child Assessment Teaching Scale) when the child was 3 and 12 months old. Parents of preterm infants had lower interaction scores than parents of term infants. Differences between the groups were not explained by differences in the behavior of the infant, in levels of stress (measured by the Parenting Stress Index), in marital support (measured by the Dyadic Adjustment Scale), or in level of involvement with their child. Fathers of both term and preterm infants had lower interaction scores than mothers. Parents' interaction scores decreased over time, while the responsiveness and clarity of cues of the infants increased over time. The results are discussed in relationship to other research on prematurity stereotyping and the vulnerable child syndrome.
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Research Interests: Nursing, Stress, Public Health, Social Class, Marriage, and 22 moreProspective studies, Humans, Child, Female, Male, Infant, Marital Quality, Risk factors, Public Health Nursing, Socioeconomic Status, Newborn Infant, Questionnaires, Longitudinal Studies, Adult, Public health systems and services research, Analysis of Variance, Behavior Problems, Chi Square Distribution, Risk Factors, Gestation, Parent‐child Relations, and Nino
This qualitative study focused on the experiences of six 20- to 23-year-old persons with cerebral palsy and their parents during the transition to adulthood and explored perceived changes in their relationship. Using semi-structured... more
This qualitative study focused on the experiences of six 20- to 23-year-old persons with cerebral palsy and their parents during the transition to adulthood and explored perceived changes in their relationship. Using semi-structured interviews, three interrelated themes emerged: (a) perceptions of readiness for increased autonomy, (b) opportunities for the young adults to make independent decisions and learn from life experiences, and (c) shifting parental roles. The youths' autonomy related to parental perceptions of their readiness and push for autonomy, the parent's personal beliefs and readiness to support the changing relationship, and the parents' needs for separation from the child. In some families of youths requiring ongoing support for personal care, finances were a barrier to altering relationships with their child.
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This study was designed to evaluate the use of the Berg Balance Scale (BBS) to assess the balance abilities of children with cerebral palsy. Thirty-six ambulatory children with cerebral palsy and 14 children with no motor impairment (ages... more
This study was designed to evaluate the use of the Berg Balance Scale (BBS) to assess the balance abilities of children with cerebral palsy. Thirty-six ambulatory children with cerebral palsy and 14 children with no motor impairment (ages eight to 12 years) were assessed on the BBS and the Gross Motor Function Measure (GMFM). Participants with cerebral palsy comprised three groups based on diagnosis (spastic hemiplegia, spastic diplegia who ambulated without aids, and spastic diplegia who ambulated with aids). A fourth group consisted of control subjects with no motor impairment. It was hypothesized that these four groups demonstrated a hierarchy of balance abilities. A one-way ANOVA was used to detect significant differences in test scores among the four groups. The analysis was repeated categorizing children on the Gross Motor Function Classification System (GMFCS) instead of diagnosis. The ability to use scores on the GMFM was slightly better than using BBS scores to distinguish among the groups when children were classified using diagnosis. Significant pair-wise differences among the groups were present on both the BBS and the GMFM when the children were grouped on the GMFCS. The results suggest that the BBS can be considered as a clinical measure of balance for children with cerebral palsy, and a functional classification system can be used to group children more homogeneously than traditional classification by diagnosis.
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Page 1. EMPIRICAL RESEARCH Subjective Age in the Transition to Adulthood for Persons with and without Motor Disabilities Nancy L. Galambos Æ Johanna Darrah Æ Joyce Magill-Evans Published online: 10 May 2007 © Springer Science+Business... more
Page 1. EMPIRICAL RESEARCH Subjective Age in the Transition to Adulthood for Persons with and without Motor Disabilities Nancy L. Galambos Æ Johanna Darrah Æ Joyce Magill-Evans Published online: 10 May 2007 © Springer Science+Business Media, LLC 2007 ...
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The homeostatic theory of stereotyped behaviors assumes that these behaviors modulate arousal. Weighted vests are used to decrease stereotyped behaviors in persons with autism because the input they provide is thought to serve the same... more
The homeostatic theory of stereotyped behaviors assumes that these behaviors modulate arousal. Weighted vests are used to decrease stereotyped behaviors in persons with autism because the input they provide is thought to serve the same homeostatic function. This small-n, randomized and blinded study measured the effects of wearing a weighted vest on stereotyped behaviors and heart rate for six children with autism in the classroom. Weighted vests did not decrease motoric stereotyped behaviors in any participant. Verbal stereotyped behaviors decreased in one participant. Weighted vests did not decrease heart rate. Heart rate increased in one participant. Based on this protocol, the use of weighted vests to decrease stereotyped behaviors or arousal in children with autism in the classroom was not supported.