Introduction: Bruxism is a repetitive masticatory muscle activity that may cause substantial morbidity and reduce the quality of life in children with profound intellectual and multiple disabilities. Assessment methods most commonly used were caregiver reporting and dental examination, This systematic review with meta-analysis aims to determine the prevalence of bruxism in children with profound intellectual and multiple disabilities and to describe the currently used assessment methods for bruxism in this population. Methods: We conducted a systematic review and meta-analysis using a multi-component search strategy. We used a random effects model to calculate the prevalence and 95 % confidence intervals for each study, for all studies combined, and specifically for Rett syndrome (RS), cerebral palsy (CP), Down syndrome (DS), and “other disorders (primarily Angelman syndrome and Prader–Willi syndrome).” Results: The prevalence for the entire group based on a random effects model was found to be 49 % (95 %CI 41–57 %) with high heterogeneity (I2 = 93 %, p < 0.01), for RS 74 % (95 %CI 53–88 %, I2 = 84 %, p < 0.01), CP 48 % (95 %CI 38–57 %, I2 = 86 %, p < 0.01), DS 40 % (95 %CI 33–47 %, I2 = 60 %, p < 0.01) and “other disorders” 40 % (95 %CI 18–67 %, I2 = 98 %, p < 0.01). The group prevalences were not equal, indicating a significant difference (P-value = 0.03), with a notably higher likelihood of RS. Conclusion: We observed a five-fold increased likelihood of bruxism in children with profound intellectual and multiple disabilities. The disorder with the highest prevalence was Rett syndrome, with a seven-fold increased likelihood of bruxism. The increased likelihood of bruxism in this vulnerable group of children demands clinicians pay heed to this substantial morbidity.
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The influence of a person’s environment and its modifying potential on participation is well recognized for most childhood disabilities, but scarcely studied for adolescents with autism spectrum disorder (ASD). A scoping review was conducted, the aim of which was to map the existing literature about supporting and hindering environments for the participation of adolescents with ASD. Sources of scientific evidence were searched for in four databases. Inclusion criteria were the perspectives of adolescents between 12 and 21, families, peers, or significant others; ecologic validity; and a clear connection between environment and participation. The publication dates ranged from 2001 to 2014 and partly up to 2018. The International Classification of Functioning, Disability and Health (ICF) served as the guiding framework for inclusion/exclusion during the selection process. Thematic analysis was performed by five independent reviewers. Results were additionally validated by stakeholders. This scoping review identified 5528 articles, and finally included 31 studies. Two main themes were found: “providing security” indicates how the environment, and specifically the parental, physical, and informational environments, have a securing or intimidating effect. The second theme, “helping to connect”, indicates which environments support or hinder social relationships or social activities, and hence participation. An additional third main theme, “tension in participation”, relates to ambiguities that seem essential to understand participation or isolation of adolescents with ASD. Results show that participation is a value-laden concept. This research widens the field of dealing with adolescents with ASD, as it directs attention towards the responsibility of the environment regarding participation.
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Background: Current use of smartphone cameras by parents create opportunities for longitudinal home-video-assessments to monitor infant development. We developed and validated a home-video method for parents, enabling Pediatric Physical Therapists to assess infants’ gross motor development with the Alberta Infant Motor Scale (AIMS). The objective of the present study was to investigate the feasibility of this home-video method from the parents’ perspective. Methods: Parents of 59 typically developing infants (0–19 months) were recruited, 45 parents participated in the study. Information about dropout was collected. A sequential mixed methods design was used to examine feasibility, including questionnaires and semi-structured interviews. While the questionnaires inquired after the practical feasibility of the home-video method, the interviews also allowed parents to comment on their feelings and thoughts using the home-video method. Results: Of 45 participating parents, 34 parents returned both questionnaires and eight parents agreed to an interview. Parent reported effort by the infants was very low: the home-video method is perceived as similar to the normal routine of playing. The parental effort level was acceptable. The main constraint parents reported was time planning. Parents noted it was sometimes difficult to find the right moment to record the infant’s motor behavior, that is, when parents were both at home and their baby was in the appropriate state. Technical problems with the web portal, reported by 28% of the parents were also experienced as a constraint. Positive factors mentioned by parents were: the belief that the home videos are valuable for family use, receiving feedback from a professional, the moments of one-on-one attention and interaction with their babies. Moreover, the process of recording the home videos resulted in an increased parental awareness of, and insight into, the gross motor development of their infant. Conclusion: The AIMS home-video method is feasible for parents of typically developing children. Most constraints are of a practical nature that can be addressed in future applications. Future research is needed to show whether the home-video method is also applicable for parents with an infant at risk of motor development problems.
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In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs.
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Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research. Findings: The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.
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Background Parenting a child with profound intellectual and multiple disabilities has great implications. Parents generally rely heavily on healthcare and social welfare services in caring for the child at home. Previous studies indicated mismatch between what parents need to preserve family and personal wellbeing and what is typically provided by services. This study focused on the role of healthcare and social welfare services in childcare and aims to contribute to understanding how parents perceive their interactions with service providers. Methods We interviewed 25 Dutch parents who cared for their child at home. Data were analysed using Framework Method. Findings Two overarching themes were found: “Being the lifeline” addressed that parents had central roles in fragmented services, and “Losing ownership” highlighted that parents were constrained in living life according to own beliefs and values while interacting with providers. Conclusions Findings illuminated that many parents became overburdened and compromised heavily on agency over family thriving due to functioning of healthcare and social welfare services. Findings supported working with integrated family case managers, creating effective and proactive access to equipment and services, and enacting high quality facilities for help with childcare and respite. These are important conditions to enable parents to construct family life more autonomously and make their further contribution to society. This may also lead to improved connotations of dependence on healthcare and social welfare services.
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The purpose of this study was a serial assessment of gross motor development of infants at risk is an established procedure in neonatal follow-up clinics. Assessments based on home video recordings could be a relevant addition. In 48 infants (1.5-19 months), the concurrent validity of 2 applications was examined using the Alberta Infant Motor Scale: (1) a home video made by parents and (2) simultaneous observation on-site by a pediatric physical therapist. Parents’ experiences were explored using a questionnaire.
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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school. Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure. Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported. Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.
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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school. Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure. Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported. Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.
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"A proportion of those with eating disorders have also experienced traumatic events and ongoing symptoms of PTSD such as re-experiencing of the trauma and nightmares. We implemented an innovative trauma intervention called Imagery Rescripting (ImRs) to explore whether for those undergoing inpatient treatment for an eating disorder (in an underweight phase), it would be possible to treat the various trauma-related symptoms as well as the eating problems. Since this has not been investigated before, we asked the participants in this study to recount their experiences. Twelve participants who were underweight, reported a past history of trauma and were in an inpatient eating disordertreatment program participated in ImRs therapy intervention. One of these participant did not engage in the ImRs therapy because she discontinued the inpatient ED treatment. Analysis of interviews with these participants found that -although they were reluctant before the start of the treatment- the ImRs treatment during their inpatient admission had given them hope again. They added that it was important to have support from group members, sociotherapists and therapists. They shared a number of ways that the ImRs treatment could be adapted to people with eating disorders. Their experiences indicated that given these factors it was possible to treat PTSD during an underweight phase. This is important: until now, treatment for eating disorders has not specifically been trauma-focused and these tips have scope to improve the ImRs intervention and eating disorder treatment more broadly in the future."
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