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Purpose: Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0)., Methods: A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis., Results: Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child's care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling., Conclusions: This article identifies components of healthcare that families find helpful and desirable.

Background: When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions., Aims: This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery., Methods and Procedures: A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis., Results: For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized., Conclusions: The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service., Competing Interests: Declaration of Competing Interest The authors have no conflict of interest to report., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: This scoping review synthesized existing qualitative studies to provide conceptual clarity to "parents' perspectives" in speech, language, and communication interventions for children., Methods: Peer-reviewed articles published between January 2009 and June 2019 were reviewed in accordance with the steps recommended by Arksey and O'Malley. In total, 1883 unique records were screened, and 40 studies met inclusion criteria. Inductive content analysis was used to analyze the research questions and major themes reported in studies., Results: The included studies were conducted across geographical regions and included parents of children of different ages and clinical diagnoses. Eight aspects of parents' perspectives were identified: access , decision making , implementation , relationship , roles , impact , expectations, and general experience . In addition, a subset of studies explored parents' opinions regarding technologies used in therapy., Conclusions: Findings from this review suggest that parents' perspectives have been explored across a range of geographical locations on interventions for various clinical populations. The identified categories provide some conceptual clarity for clinicians and for future research on this topic. Future studies should (i) better adhere to qualitative study reporting standards; (ii) explore parents' perspectives regarding the context of speech language therapy; and (iii) include all parents' perspectives in speech and language interventions.IMPLICATIONS FOR REHABILITATIONParents' perspectives in communication interventions are complex and multifaceted.Clinicians and researchers can consider parents' perspectives using the eight, broad thematic categories identified in this scoping review.

Objectives: To study the extent to which parents are able to serve as true proxies for their children with epilepsy using a more granular approach than has been found in any study to date., Methods: Proxy resemblance to the child was based on discrepancy in z-centered child minus parent scores of matching quality-of-life (QOL) domains for 477 dyads. Latent class mixed models (LCMMs) were built, with child's age as the independent variable for epilepsy-specific and generic QOL. Data were obtained from the QUALITÉ Canadian cohort, which recruited children with epilepsy aged 8 to 14 years at baseline and their parents., Results: Both epilepsy-specific and generic LCMMs produced latent classes representing proxies that were overly positive, overly negative, or in agreement relative to their children with posterior probabilities of 79% to 84%. The "agreement" classes had N = 411 and N = 349 in the epilepsy-specific and generic LCMMs, respectively. The epilepsy-specific LCMM had a small unique class of N = 5 with a posterior probability of 88% called "growing discrepancy.", Conclusions: Most parents of children with epilepsy can serve as valid proxies for their children on QOL scales. Poorer parental adaptation is more related to overly negative proxies, whereas low peer support from the child's perspective is more related to overly positive proxies., (Copyright © 2019 ISPOR–The Professional Society for Health Economics and Outcomes Research. Published by Elsevier Inc. All rights reserved.)

Children and adolescents with cerebral palsy often receive botulinum toxin A (BoNT-A) to manage hypertonia. This qualitative study aimed to describe and categorize BoNT-A effects that parents observed using the WHO's International Classification of Functioning, Disability and Health (ICF) framework. An interpretive description methodology was used; semi-structured interviews were conducted with 15 parents of nonambulatory young people with cerebral palsy (mean age 10.2 years, SD 3.9, 7 males) who received BoNT-A. Parents reported BoNT-A effects on each ICF category. Through interpretive description, an overall theme emerged: "finding the right path to do what is best." Five subthemes included (1) Parents' hopes, (2) Parents' goals for their child, (3) Parents' learning what works, (4) Parents' reflections, and (5) Parents' destination. This study provides insights into parents' journeys of how they learned about BoNT-A effects in their child, which helped them to identify goals for future treatment.

Background: 'About My Child' 19-item version (AMC-19) is a parent-report measure developed to assess the complexity of a child's life due to biological, psychological, social and environmental issues, that can be completed in approximately 5 min. AMC measures two dimensions of complexity: parental concerns and impact on the child. This paper examines the psychometric properties and parent-reported utility of the AMC-19 for children with disabilities or special health care needs., Method: Data were gathered from two Canadian studies at CanChild: the 'AMC-19 Pilot' study and the 'Service Utilization and Outcomes (SUO)' study. The AMC-19 Pilot study data allowed us to explore internal consistency and test-retest reliability, as well as parental responses to two open-ended questions on the utility of the AMC-19. The SUO study provided data for analyses of internal consistency and scale property validation with type of diagnosis and service needs., Results: The test-retest ICC was r = 0.83 for concerns and r = 0.87 for impact. Cronbach's alpha across both studies ranged from 0.80 to 0.90. Parents' comments on the AMC-19's utility indicated support for the AMC-19, in particular to identify therapy needs and goals., Conclusions: The AMC-19 demonstrates strong psychometric properties supporting it as a valuable measure for describing the level of complexity among children with disabilities. We recommend using the AMC-19 in health services research and clinical settings to build dialogue between family and therapists due to its utility reported by parents.

Objective: To describe the developmental trajectories of quality of life (QoL) in a large cohort of children with epilepsy, and to assess the relative contribution of clinical, psychosocial, and sociodemographic variables on QoL trajectories., Methods: Five assessments during a 28-month prospective cohort study were used to model trajectories of QoL. Participants were recruited with their parents from six Canadian tertiary centers. A convenience sample of 506 children aged 8-14 years with epilepsy and without intellectual disability or autism spectrum disorder were enrolled. A total of 894 children were eligible and 330 refused participation. Participating children were, on average, 11.4 years of age, and 49% were female. Nearly one third (32%) had partial seizures. At baseline, 479 and 503 child- and parent-reported questionnaires were completed. In total, 354 children (74%) and 366 parents (73%) completed the 28-month follow-up. QoL was measured using the child- and parent-reported version of the Childhood Epilepsy QoL scale (CHEQOL-25)., Results: Child-reported QoL was fitted best by a six-class model and parent-reported QoL by a five-class model. In both models, trajectories remained either stable or improved over 28 months. Of these children, 62% rated their QoL as high or moderately high, defined as at least one standard deviation above the average CHEQOL-25 score. Greater family, classmate, and peer social support, fewer symptoms of child and parent depression, and higher receptive vocabulary were identified as the most robust predictors of better QoL (all p < 0.001)., Significance: Most children with epilepsy and their parents reported relatively good QoL in this first joint self- and proxy-reported trajectory study. Findings confirm the heterogeneous QoL outcomes for children with epilepsy and the primary importance of psychosocial factors rather than seizure and AED-specific factors in influencing QoL. These predictors that are potentially amenable to change should now be the focus of specific intervention studies., (Wiley Periodicals, Inc. © 2017 International League Against Epilepsy.)

Objective: To study child mental health, parental support, and social support of children with epilepsy as these relate to quality of life (QOL) using child self-report, seizure-related variables, and estimated verbal intelligence based on receptive vocabulary., Methods: A cross-sectional structural equation model of baseline data from the QUALITÉ cohort study, which includes 6 Canadian child epilepsy ambulatory programs. A sample of 3,481 children were screened for the following eligibility: 8 to 14 years of age, with active or medication-managed epilepsy. Of 894 eligible children, 506 agreed to participate, of whom 26 were then excluded because of an inability to self-report based on a standard cutoff score of receptive vocabulary lower than 70. The primary outcome of child-reported QOL was measured using the Child Epilepsy QOL Questionnaire., Results: From the child's perspective, epilepsy-specific QOL is strongly related to their mental health and social support but not to their seizures. Specifically, child mental health and peer support exhibit direct associations with QOL; parental support has both direct and indirect associations with QOL (via child mental health); estimated verbal intelligence exerts its strongest association with QOL through mental health; and seizure status exhibits a weak relationship to QOL only through mental health., Conclusions: Among children with epilepsy aged 8 to 14 years, mental health and social support should be areas of focus in the assessment of QOL. Controlling seizures is insufficient care for influencing the child's perception of their life., (© 2015 American Academy of Neurology.)

Aim: To describe the development of context therapy, a new intervention approach designed for a randomized controlled trial., Method: Therapists were trained to change task and environmental factors to achieve parent-identified functional goals for children with cerebral palsy. Therapists did not provide any remediation strategies to change the abilities of the child. Theoretical constructs were developed using dynamic systems theory and the principles of family-centered care. A primary therapist model was used. A three-step intervention strategy was developed., Results: Therapists adhered to the treatment protocol. Parents participated in the development of both functional goals and intervention strategies., Interpretation: A therapy approach focusing on changing the task and the environment rather than children's impairments can be a viable treatment strategy and merits further investigation. The detailed description of the context therapy approach allows replication by both researchers and clinicians. Such intervention descriptions are an important methodological consideration in rehabilitation research., (© The Authors. Developmental Medicine & Child Neurology © 2011 Mac Keith Press.)

Aim: This study evaluated the efficacy of a child-focused versus context-focused intervention in improving performance of functional tasks and mobility in young children with cerebral palsy., Method: A randomized controlled trial cluster research design enrolled 128 children (49 females, 79 males; age range 12 mo to 5 y 11 mo; mean age 3 y 6 mo, SD -1 y 5 mo) who were diagnosed with cerebral palsy. Children across levels I to V on the Gross Motor Classification System (GMFCS) were included in the study. Children were excluded if there were planned surgical or medication changes during the intervention period. Therapists from 19 children's rehabilitation centers were block randomized (by occupational therapist or physical therapist) to a treatment arm. Children from consenting families followed their therapists into their assigned group. Children received child-focused (n=71) or context-focused intervention (n=57) over 6 months, returning to their regular therapy schedule and approach between 6 and 9 months. The primary outcome measure was the Pediatric Evaluation of Disability Inventory (PEDI). Secondary outcome measures included the Gross Motor Function Measure (GMFM-66), range of motion of hip abduction, popliteal angle and ankle dorsiflexion, the Assessment of Preschool Children's Participation (APCP), and the Family Empowerment Scale (FES). Outcome evaluators were masked to group assignment and completed assessments at baseline, 6 months, and 9 months., Results: Ten children did not complete the full intervention, six in the child group and four in context group. GMFCS levels for children in the study were level I (n=37), level II (n=23), level III (n=21), level IV (n=21), and level V (n=26). There were no significant differences at baseline between the treatment groups for GMFCS level, parental education, or parental income. For the PEDI, there was no significant difference between the treatment groups, except for a small effect (p<0.03) on the Caregiver Assistance Mobility subscale between baseline and 9 months. The mean scores of both groups changed significantly on the Functional Skills Scales (p<0.001) and Caregiver Assistance Scales (p<0.02) of the PEDI after the 6-month intervention. There was no additional statistically significant change on the PEDI during the follow-up period from 6 to 9 months. A subgroup effect was found for age (p<0.001), with children younger than 3 years changing significantly more than older children. GMFCS level at baseline did not influence the amount of change on the PEDI scales. There were no significant differences between the treatment groups on the GMFM, range of motion measures, APCP or FES assessments. For the GMFM, there was a significant change over time from baseline to 6 months (p<0.001) and no significant change between 6 and 9 months. There was no adverse side effect as range of motion did not decrease in either group. Hip abduction increased significantly (p<0.01) at the 9-month assessment for both groups. For the APCP, significant changes for both treatment groups were found between baseline and 6 months for play intensity (p<0.04), physical activity intensity and diversity (p<0.001), and total score intensity (p<0.01)., Interpretation: This study shows that child- or context-focused therapy approaches are equally effective and that frequency of intervention may be a critical component of successful intervention. Further evaluation is required to identify the various 'dose-response' relations of amount of treatment and changes in functional abilities., (© The Authors. Developmental Medicine & Child Neurology © 2011 Mac Keith Press.)

Background: Quality of life is recognized as an important outcome of health services. Ideally, the child's perspectives should be sought directly to define their quality of life; however, this may be limited by age and cognitive and language abilities., Purpose: In a sample of school-aged children with cerebral palsy (CP), we compared a parent's perspective of their child's quality of life with their child's own perspective, when feasible., Methods: Forty-eight children completed the Pediatric Quality of Life Inventory (PedsQL) measure independently (n = 33/48, 69% Gross Motor Function Classification System (GMFCS) I; n = 6/48, 12% III-V). A parent completed the proxy version and the scores were compared., Results: Intraclass correlation (ICC) coefficients were high for physical (ICC = 0.72, confidence interval [CI]: 0.55-0.83) and moderate for psychosocial (ICC = 0.54, CI: 0.30-0.71) well-being, with the weakest agreement on school functioning and the strongest agreement for ratings of physical health. Parental ratings were more often lower, especially for social functioning, although children rated themselves lower on emotional functioning. Factors associated with a closer agreement between parent-child pairs included older age, male gender, higher social competency, functional abilities, and fewer emotional symptoms (r (2) = 0.07-0.30)., Conclusion: In children with CP, parents' ratings of their children's quality of life are generally comparable as a group to their child's self-report. Disparities do exist, particularly in psychosocial domains, and, therefore, the child's own perspective should be considered whenever feasible.

The aim of this study was to determine the reliability of family and professional assessment of manual ability using the Manual Ability Classification System (MACS) for children with cerebral palsy (CP) in the UK. Families who were taking part in a study measuring the activities and participation of children with CP were invited to classify their child's manual ability using the MACS. Postal surveys were conducted with the families and health professionals nominated by the families. Perfect agreement was assessed as a percentage; chance-corrected agreement was measured using Cohen's kappa (kappa), and reliability was determined using the intraclass correlation coefficient (ICC). Families of 91/128 (71%) children responded to the survey (53 males, 38 females; mean age 9y 11mo [SD 1y 11mo], range 6-12y) out of whom 88 indicated a single MACS level. Seventy-two children (82%) were classified with spastic CP, 12 (14%) with dyskinesia, two (2%) with ataxia, and two (2%) were not classified. There were 21, 27, 11, 10, and 19 children who were classified by their families in Gross Motor Function Classification System Levels I to V respectively; 14, 30, 18, 13, and 13 children classified by their families in MACS levels I to V. The survey of health professionals generated 60/71 (85%) responses from physiotherapists, 55/58 (93%) responses from paediatricians, and 21/24 (88%) responses from occupational therapists. There was perfect agreement between families and professionals for more than 50% of children; the indices of chance-corrected agreement ranged from kappa=0.3 to 0.5, and the reliability coefficients ranged from ICC 0.7 to 0.9. Indices of agreement and reliability between families and professionals were equivalent to those between different professionals. The MACS, therefore, offers a valid and reliable method for communicating about the manual ability of children with CP. Families and professionals may not always agree precisely on a MACS level, particularly if children's performance of manual tasks varies in different environments.

Background: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered., Discussion: Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks., Summary: This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.

This study examined the construct validity of the Autism Classification System of Functioning: Social Communication (ACSF). Participants included 145 parents of children with autism (2-19 years). The degree of convergent and discriminant validity between parent reported ACSF and subscales from Social Responsiveness Scale 2nd edition and Behavior Assessment System for Children, 3rd Edition were examined against a priori hypotheses. We examined construct validity in the entire sample as well as in specific age cohorts. Our findings suggest that ACSF can provide a valid classification system of social communication ability in children with autism 2-19 years of age, and its two subscales may be used to examine different aspects of social communication ability.

Aim: The purpose of this study was to create and validate the Communication Function Classification System (CFCS) for children with cerebral palsy (CP), for use by a wide variety of individuals who are interested in CP. This paper reports the content validity, interrater reliability, and test-retest reliability of the CFCS for children with CP. Method: An 11-member development team created comprehensive descriptions of the CFCS levels, and four nominal groups comprising 27 participants critiqued these levels. Within a Delphi survey, 112 participants commented on the clarity and usefulness of the CFCS. Interrater reliability was completed by 61 professionals and 68 parents/relatives who classified 69 children with CP aged 2 to 18 years. Test-retest reliability was completed by 48 professionals who allowed at least 2 weeks between classifications. The participants who assessed the CFCS were all relevant stakeholders: adults with CP, parents of children with CP, educators, occupational therapists, physical therapists, physicians, and speech-language pathologists. Results: The interrater reliability of the CFCS was 0.66 between two professionals and 0.49 between a parent and a professional. Professional interrater reliability improved to 0.77 for classification of children older than 4 years. The test-retest reliability was 0.82. Interpretation: The CFCS demonstrates content validity and shows very good test-retest reliability, good professional interrater reliability, and moderate parent-professional interrater reliability. Combining the CFCS with the Gross Motor Function Classification System and the Manual Ability Classification System contributes to a functional performance view of daily life for individuals with CP, in accordance with the World Health Organization's International Classification of Functioning, Disability and Health.

This brief report presents interrater reliability data for the Focus on the Outcomes of Communication Under Six (FOCUS-34) between parents, and between parents and speech-language pathologists (SLPs). Reliability for all three raters combined was good to excellent across three assessments. Reliability for pairs of raters was variable but generally good. [ABSTRACT FROM AUTHOR]

Introduction: In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)‐Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths‐based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co‐authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co‐developed and implemented the workshops. Methods: Collaborative auto‐ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public‐2 tool, were used to describe the co‐design process, the benefits gained, and lessons learned. Findings: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent–researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self‐reflection; and (vii) funding. Conclusion: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together. [ABSTRACT FROM AUTHOR]

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Background: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. Methods: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. Results: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family–researcher partnerships. Conclusion: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done. Plain English summary: More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them. [ABSTRACT FROM AUTHOR]

Abstract Childhood epilepsy is one of the most important and prevalent neurological conditions in the developing years. Persons with childhood onset epilepsy are at a high risk for poor psychosocial outcomes, even without experiencing co-morbidities. The goal of management of children with epilepsy should be to enable the child and the family to lead a life as free as possible from the medical and psychosocial complications of epilepsy. This comprehensive care needs to go beyond simply trying to control seizures with minimal adverse drug reactions. Seizure frequency and severity is only one important outcome variable. Other factors such as social, psychological, behavioural, educational, and cultural dimensions of their lives affect children with epilepsy, their families and their close social networks. A number of epilepsy-specific health-related quality of life (HRQL) scales for children have been developed with the aim to include and measure accurately the impact and burden of epilepsy. Their target populations, details of the origin of the items, and psychometric properties vary significantly. Their strengths and weaknesses will be identified more clearly through their continued use in the clinical setting and in research studies. Only a few studies to date have utilized these or generic HRQL measures to assess the HRQL of specific populations with epilepsy. Future research needs to develop theory driven models of HRQL and identify measurable factors that have important correlations with outcomes. Since biomedical variables like seizure frequency and severity have only moderate correlations with HRQL, other independent factors including the child's resilience, co-morbid conditions, parental well-being, family factors and societal/cultural variables may play a major role. We also need to learn what encompasses comprehensive patient care, define the goals of management and evaluate the impact of different interventions. Future studies need to include the children's own perspectives of their HRQL in addition to parental reports. Finally, clinicians need to familiarize themselves with outcome measures, be able to evaluate them, and use them routinely in their day-to-day practice.

Purpose: Parents' attendance, participation and engagement are thought to be critical components of children's rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents' attendance, participation and engagement in children's rehabilitation services. Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail. Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent's feelings, skills, knowledge, logistics, values and beliefs and parent's relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children's developmental rehabilitation services. [ABSTRACT FROM AUTHOR]

Purpose: To explore parents’ perspectives on rehabilitation of their child with cerebral palsy and their information needs. Methods: Semistructured interviews were conducted with parents of children with CP from India (n = 11) and Canada (n = 7). Data were analyzed through an interpretive description approach using the International Classification of Functioning, Disability and Health framework. Results: Body Structure and Function: Indian parents were more focused on fixing body structure and function challenges, and independent walking, than Canadian parents. Activity and Participation: All Canadian children were actively involved in school and fun activities in the community. Due to lack of accessible services, Indian children had less school and community participation. Environmental factors: accessible communities, occupational therapy services and greater use of assistive devices enabled Canadian children. Social and cultural beliefs, lack of access to services and inaccessible communities were the barriers experienced by Indian parents. Information needs: both groups needed information to make their child more functional. Conclusion: Canadian parents experience a more enabling environment and express a more social view of their child’s health, suggesting both education on the International Classification of Functioning, Disability and Health principles and services are needed to better enable and empower Indian parents. There remains a need for healthcare professionals and services in both countries to be more family-centered. Implications for rehabilitation: To help parents in rehabilitating their children with cerebral palsy (CP), in India, there is a need to (1) incorporate ICF education into medical curricula and clinical practice; (2) increase the availability of skilled healthcare professionals and centers; (3) make infrastructural and policy reforms to make the society more accessible for the disabled children. Education, counseling and awareness about CP might help both groups of parents, society, and HCPs to change their beliefs and attitudes regarding CP and its rehabilitation. Both countries would benefit from user-friendly and transparent policies. This will help parents to become more aware of them and use them in the rehabilitation process. [ABSTRACT FROM AUTHOR]

4 Balint M. The Doctor, His Patient and the Illness. Physicians are taught to pay close attention to the details of the presentation of an individual's predicament, because the story behind the issues - the illness or impairment - usually contains useful information that may enable us to develop first, tentative hypotheses about what are more and less likely "explanations" for the story. GRAPH DATA AVAILABILITY STATEMENT N/A REFERENCES 1 Dewar G. The Mozart effect: the truth behind the claims. [Extracted from the article]

Purpose: This paper reports changes in communicative participation skills—systematically measured and described—in an empirical observational case series of eight children receiving augmentative and alternative communication (AAC) interventions. Method: The eight children (seven boys, one girl), ranging from 1 year 4 months to 4 years 11 months (mean = 2.8 years; SD = 1.32 years) received varied AAC interventions (i.e. sign language, assistive technology, PECS), averaging 15 hours of treatment over a 12-month period. Parents completed an outcome measure (FOCUS) three times: at the start, mid-point (6 months) and end of the intervention period (after 12 months). They also completed the ASQ-SE at the start and end of intervention. Result: FOCUS scores increased over the treatment interval, indicating improvement in real-world communication skills as observed by their parents. The ASQ-SE items that pertained to communication also improved, while the items that did not correspond to communication did not. This divergence suggests that the communicative participation improvements resulted from treatment rather than general developmental gains. The largest improvements were noted in receptive language/listening, pragmatics and social/play skills. Improvements in intelligibility were also measured for several children. Conclusion: These results suggest that AAC intervention facilitated improvements in communicative participation skills in pre-school children. [ABSTRACT FROM AUTHOR]

Aim The aim of this study was to establish the construct validity of the Focus on the Outcomes of Communication Under Six ( FOCUS©),a tool designed to measure changes in communication skills in preschool children. Method Participating families' children ( n=97; 68 males, 29 females; mean age 2y 8mo; SD 1.04y, range 10mo-4y 11mo) were recruited through eight Canadian organizations. The children were on a waiting list for speech and language intervention. Parents completed the Ages and Stages Questionnaire - Social/ Emotional ( ASQ- SE) and the FOCUS three times: at assessment and at the start and end of treatment. A second sample ( n=28; 16 males 12 females) was recruited from another organization to correlate the FOCUS scores with speech, intelligibility and language measures. Second sample participants ranged in age from 3 years 1 month to 4 years 9 months (mean 3y 11mo; SD 0.41y). At the start and end of treatment, children were videotaped to obtain speech and language samples. Parents and speech-language pathologists ( SLPs) independently completed the FOCUS tool. SLPs who were blind to the pre/post order of the videotapes analysed the samples. Results The FOCUS measured significantly more change ( p<0.01) during treatment than during the waiting list period. It demonstrated both convergent and discriminant validity against the ASQ- SE. The FOCUS change corresponded to change measured by a combination of clinical speech and language measures (κ=0.31, p<0.05). Conclusion The FOCUS shows strong construct validity as a change-detecting instrument. [ABSTRACT FROM AUTHOR]

Summary: Purpose: To answer a need to include and measure accurately the impact and burden of epilepsy as outcomes of interventions with affected children, we developed and validated self-report and parent-proxy respondent health-related quality of life (HRQL) instruments for preadolescent children with epilepsy. Methods: We combined qualitative and quantitative research methods. Items were extracted from focus group discussions involving children with epilepsy and their parents. We created scales formatted with alternative paired options of forced responses and used factor analysis to generate relevant subscales and reduce the number of items. We checked internal consistency, assessed test–retest reliability 10–14 days apart, and documented construct validity. Results: A sample of 381 children with epilepsy, age 6–15 years, and their parents independently completed a 67-item questionnaire, from which we chose five items for each subscale. The measures share four subscales, but each measure has an additional distinct subscale. The children and parents could discern differences and report differentially between the various aspects of the HRQL. Internal consistency measured with Cronbach's α was acceptable for all subscales; construct validity has been demonstrated from the testing of several hypotheses. Test–retest reliability examined with the intraclass correlation coefficient was satisfactory for the parents and for children age 8 years and older. The correlations between the mothers' and children's responses was poor to moderate. Conclusions: The data demonstrate sound psychometric properties for both related measures, which are easy to administer for children with epilepsy who are 8 years and older and their parents. The subscales encompass HRQL dimensions judged most important by children with epilepsy for the self-report measure and by parents for the proxy response measure. The parent-proxy measure should be useful as a... [ABSTRACT FROM AUTHOR]

Little is known about the elements of service delivery that underlie parents' satisfaction with the pediatric rehabilitation services their children receive. Determining the most important elements of satisfaction and dissatisfaction will inform health care managers about what should be done in delivering services. In this study, 130 highly satisfied and 101 relatively dissatisfied parents were identified based on their scores on a standardized satisfaction measure (from a pool of 645 parents). Parents' comments (the 3 things they liked most and least about the services received from a children's rehabilitation center or program) were coded using a comprehensive coding scheme based on the medical and rehabilitation literatures. Coding agreement was ensured through a consensus procedure. Highly satisfied parents most often mentioned elements of the service delivery process, particularly respectful and supportive care (i.e., feeling listened to and having a sense of rapport with service providers). Relatively dissatisfied parents most often mentioned structural elements (particularly lack of access to existing services) and process elements (respectful and supportive care, as well as lack of continuity and coordination of care). To ensure parents' satisfaction and prevent dissatisfaction, managers and service providers should reduce waiting lists, provide respectful and supportive care, and ensure services are coordinated across locations and over time. Measures of satisfaction should contain items tapping elements of both process and structure, because structural elements are particularly important in terms of parents' dissatisfaction. [ABSTRACT FROM AUTHOR]

This article describes a developmental model for early home intervention and treatment of environmentally and biologically at-risk infants and their parents: The Transactional Model of Home Intervention. The model identifies the development of both infants and parents as targets of intervention and considers their ongoing interactions or transactions within the family context as the vehicle of intervention. The child and his physical/social environment are conceptualized as actively influencing one another in their reciprocal transactions. An early intervention program based on this transaction model is described. The intervention is tailored to suit the needs of both child and parents and, more generally, the needs of the family. The intervention process involves a problem-solving model of education by which parents acquire cognitive strategies that will enable them to assess the needs of their child and to design a program to fulfill these needs. [ABSTRACT FROM AUTHOR]

AbstractPurposeMethodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONTo explore the impact of the online ENVISAGE program for parents of children with neurodevelopmental disabilities (NDD) on parents’ perception of themself, their child with a disability, and their family, as well as to explore experiences of participating in the program in Croatia.In this before-after discourse analysis study, participants took part in the five-week ENVISAGE program. There were two semi-structured interviews for each participant: within one month before and after participating in the program. The proportions of positive, neutral, and negative sentences about themself, their child, and their family from two interviews were compared on an individual and group level. The perceived changes and experiences with the program were also analyzed qualitatively.Data from thirteen participants were included. From the three pre-determined discourse categories (self, child, and family), most changes were observed in parents’ perception of self (average increase in positive views of 8.8% and decrease in negative of 5.3%). Qualitative results showed multiple positive self-perceived impacts on parents’ lives. Participants’ experiences with ENVISAGE were consistently positive; all believed they benefited from the program.The results support our assumption that participation in ENVISAGE positively affects multiple areas of life, particularly parents’ views of themself.ENVISAGE is an online, 5-week empowerment program for parents of children with neurodevelopmental disabilities that was tested for the first time in Croatia in this study.Results show that ENVISAGE mostly led to the improvements in the perception of self and their child with a disability.For all parents, ENVISAGE was a positive experience and a program they would recommend to other parents.ENVISAGE is an online, 5-week empowerment program for parents of children with neurodevelopmental disabilities that was tested for the first time in Croatia in this study.Results show that ENVISAGE mostly led to the improvements in the perception of self and their child with a disability.For all parents, ENVISAGE was a positive experience and a program they would recommend to other parents. [ABSTRACT FROM AUTHOR]

Aims: This study reports parents' perspectives of, ENVISAGE: ENabling VISions And Growing Expectations. ENVISAGE - co-designed by parents and researchers - is an early intervention program for parents raising children with neurodisability.Methods and Procedures: Using an integrated Knowledge Translation approach, this feasibility study explored parents' perspectives of the comprehensibility, acceptability, and usability of ENVISAGE workshops. Participants were Australian and Canadian parents of children with neurodisabilities, ≥12 months post-diagnosis, who independently reviewed ENVISAGE workshops using an online learning platform. Parents completed study-specific 5-point Likert-scaled surveys about individual workshops. Following this, qualitative interviews about their perceptions of ENVISAGE were conducted. Survey data were analysed descriptively, and interviews analysed inductively using interpretive description.Outcomes and Results: Fifteen parents completed surveys, of whom 11 participated in interviews. Workshops were reported to be understandable, relevant, and meaningful to families. ENVISAGE was judged to empower parents through enhancing knowledge and skills to communicate, collaborate and connect with others. Pragmatic recommendations were offered to improve accessibility of ENVISAGE.Conclusions and Implications: ENVISAGE workshops address key issues and concerns of parents of children with neurodisability in a way that was perceived as empowering. Involving parents as reviewers enabled refinement of the workshops prior to the pilot study. [ABSTRACT FROM AUTHOR]