Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health.

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.

Child disability and family-centred care in East Africa: Perspectives from a workshop with stakeholders and health practitioners.

Background: Our understanding of child disability has undergone major changes over the last three decades transforming our approach to assessment and management. Globally there are significant gaps in the application of these 21st century models of care. There is recognition that economic, cultural, and social factors influence transitions in care and there is need to consider contextual factors. Objectives: A two-day workshop brought together key stakeholders to discuss current models of care and their application in the East African context. This article summarises workshop proceedings and identifies a broadly supported set of recommendations that serve to set a direction for health professionals, families, family-based disability organisations, communities and government. Method: Presentations followed by facilitated round-table sessions explored specific themes with participants reporting their responses communally. Future actions were agreed upon by relevant stakeholders. Results: Many barriers exist to care for children with disabilities in East Africa, including stigma and a lack of human and infrastructural resources. In addition, significant disparities exist with regard to access to medication and specialist care. The International Classification of Functioning framework needs to be translated to clinical practice within East Africa, with due recognition of the importance of family-centred care and emphasis on the life course theory for disability care. Family-centred care, educational initiatives, advocacy on the part of stakeholders and involvement of government policymakers are important avenues to improve outcomes. Conclusion: Further education and data are needed to inform family-centred care and multidisciplinary team implementation across East African care contexts for children with disabilities.

Measure of Early Vision Use: development of a new assessment tool for children with cerebral palsy.

PURPOSE: To report the development of an assessment tool to describe "how vision is used" for children with cerebral palsy. METHOD: Measurement development consisted of three steps: (i) an online survey to explore the relevance and comprehensiveness of visual behaviours identified in a previous conceptualisation study; (ii) construction of items and a rating scale for the new measure; and (iii) cognitive interviews to explore comprehensibility and refine the measure in preparation for field testing. Survey respondents were 130 parents of children with cerebral palsy, eight adults with cerebral palsy, and 108 clinicians (n = 246). Nine parents participated in the interviews. RESULTS: The new tool, the Measure of Early Vision Use, is a 14-item descriptive measure of typical performance of visual behaviours observable in everyday activities, as rated by parent/caregiver observation. Each item is rated on a 4-point ordinal scale. CONCLUSIONS: This new measure is conceptually grounded within the Activity level domain of the International Classification of Functioning, Disability and Health as a measure of a single visual ability construct. The target population is children with cerebral palsy, and using parent report the Measure of Early Vision Use describes both strengths and limitations in using vision. This study addressed the selection of items and response options for the new scale, and provides evidence to support content relevance, comprehensiveness and comprehensibility from key stakeholders. Further research will explore psychometric properties and clinical utility.Implications for rehabilitationThe ability to use vision in daily activities is relevant to the development and learning of all children, so the availability of a method for describing visual abilities has potential for diverse research and clinical purposes.The Measure of Early Vision Use is a parent-report tool that provides a criterion-referenced method for quantifying and describing how children use vision in typical daily activities to support intervention planning.Clinicians and parents wishing to measure vision use in children with cerebral palsy can be confident about the rigorous methods used to develop this tool, including consultation with key stakeholders.

Exploring the Participation Patterns and Impact of Environment in Preschool Children with ASD.

Participation in everyday activities at home and in the community is essential for children's development and well-being. Limited information exists about participation patterns of preschool children with autism spectrum disorder (ASD). This study examines these participation patterns in both the home and community, and the extent to which environmental factors and social communication abilities are associated with participation. Fifty-four parents of preschool-aged children with ASD completed the Participation and Environment Measure for Young Children and the Autism Classification System of Functioning: Social Communication. The children had a mean age of 48.9 (8.4) months. Patterns of participation were studied using descriptive statistics, radar graphs, and Spearman correlations. Children with ASD participated in a variety of activities at home and in the community, but showed a higher participation frequency at home. Parents identified different barriers (e.g., social demands) and supports (e.g., attitudes) in both settings. There was a moderate positive association between children's social communication abilities and their levels of involvement during participation and the diversity of activities. This study highlights the importance of social communication abilities in the participation of preschool children with ASD, and the need to support parents while they work to improve their child's participation, especially within their communities.

Parent Proxy Discrepancy Groups of Quality of Life in Childhood Epilepsy.

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.

Presenting the model of risk, disability and hard-to-reach families to inform early intervention services.

INTRODUCTION: Several concepts - risk, resilience, disability and hard-to-reach families in early intervention services - are talked and written about in many ways. Family Stress Theory can be usefully applied to explore these issues systematically. PROBLEM: The relationship between risk and disability is complex, and the role of resilience is not fully understood. The idea of "hard-to-reach families" is not well defined, thus presenting challenges to service providers and policy makers. Reflection: This paper presents the Model of Risk, Disability and Hard-to-Reach Families and uses the model to: (1) define the groups of high risk families and families of children with disabilities and explore the concept of resilience within these groups; (2) describe services offered to these groups; and (3) reflect on service use and so-called "hard-to-reach families". Each section includes suggested applications for service providers that may inform the work done with young children and their families who experience risk or disability. CONCLUSION: Service providers can apply the Model of Risk, Disability and Hard-to-Reach Families to consider each family's unique strengths and challenges, and use those individual elements to influence service recommendations and anticipate service use. Implications for rehabilitation The concepts of risk, resilience, and hard-to-reach families are poorly defined in the literatures, but have important implications with respect to early childhood intervention services. Family Stress Theory can help to identify high-risk families and account for family resilience It is important for clinicians, researchers and policy makers to consider the relationship between disability and risk with respect to services offered to families and the potential barriers to service use. Clinicians and policy makers have a role in promoting accessible early childhood services.

Moving research tools into practice: the successes and challenges in promoting uptake of classification tools.

PURPOSE: In this paper, we present our experiences - both successes and challenges - in implementing evidence-based classification tools into clinical practice. We also make recommendations for others wanting to promote the uptake and application of new research-based assessment tools. METHOD: We first describe classification systems and the benefits of using them in both research and practice. We then present a theoretical framework from Implementation Science to report strategies we have used to implement two research-based classification tools into practice. We also illustrate some of the challenges we have encountered by reporting results from an online survey investigating 58 Speech-language Pathologists' knowledge and use of the Communication Function Classification System (CFCS), a new tool to classify children's functional communication skills. RESULT AND CONCLUSIONS: We offer recommendations for researchers wanting to promote the uptake of new tools in clinical practice. Specifically, we identify structural, organizational, innovation, practitioner, and patient-related factors that we recommend researchers address in the design of implementation interventions. Roles and responsibilities of both researchers and clinicians in making implementations science a success are presented. Implications for rehabilitation Promoting uptake of new and evidence-based tools into clinical practice is challenging. Implementation science can help researchers to close the knowledge-to-practice gap. Using concrete examples, we discuss our experiences in implementing evidence-based classification tools into practice within a theoretical framework. Recommendations are provided for researchers wanting to implement new tools in clinical practice. Implications for researchers and clinicians are presented.

Psychometric Evaluation of the Young Children's Participation and Environment Measure (YC-PEM) for use in Singapore.

AIMS: To estimate the psychometric properties of a culturally adapted version of the Young Children's Participation and Environment Measure (YC-PEM) for use among Singaporean families. METHODS: This is a prospective cohort study. Caregivers of 151 Singaporean children with (n = 83) and without (n = 68) developmental disabilities, between 0 and 7 years, completed the YC-PEM (Singapore) questionnaire with 3 participation scales (frequency, involvement, and change desired) and 1 environment scale for three settings: home, childcare/preschool, and community. Setting-specific estimates of internal consistency, test-retest reliability, and construct validity were obtained. RESULTS: Internal consistency estimates varied from .59 to .92 for the participation scales and .73 to .79 for the environment scale. Test-retest reliability estimates from the YC-PEM conducted on two occasions, 2-3 weeks apart, varied from .39 to .89 for the participation scales and from .65 to .80 for the environment scale. Moderate to large differences were found in participation and perceived environmental support between children with and without a disability. CONCLUSIONS: YC-PEM (Singapore) scales have adequate psychometric properties except for low internal consistency for the childcare/preschool participation frequency scale and low test-retest reliability for home participation frequency scale. The YC-PEM (Singapore) may be used for population-level studies involving young children with and without developmental disabilities.

Life course health development of individuals with neurodevelopmental conditions.

The life course health development (LCHD) model by Halfon et al. conceptualizes health development occurring through person-environment transactions that enable well-being and participation in desired social roles throughout life, areas that have not received adequate attention in healthcare. The aim of this 'perspectives' paper is to apply the six core tenets of the LCHD model and the concept of health development trajectories to individuals with lifelong neurodevelopmental conditions. We share the perspective that modifiable aspects of the environment often restrict health development; we then advocate that children, beginning at a young age, should engage in 'real-world' experiences that prepare them for current and future social roles. LCHD encourages future planning from the outset, continuity of care between pediatric and adult systems, and coordination of services and supports. We believe LCHD can be transformative in enabling healthy living of individuals with neurodevelopmental conditions.

The "5Rs of Reorganization": A Case Report on Service Delivery Reorganization within a Pediatric Rehabilitation Organization.

AIMS: Pediatric rehabilitation centers constantly reorganize services to accommodate changes in funding, client needs, evidence-based practices, accountability requirements, theoretical models, and values. However, there are few service delivery models or descriptions of how organizations plan for change to guide organizations through this complex task. METHODS: This case report presents the "5Rs of Reorganization," a novel process for planning service delivery reorganization projects in pediatric rehabilitation centers. The 5Rs include: 1. Recognize the need for change, 2. Reallocate resources for project management, 3. Review the reality of clients, service delivery, and the community, 4. Reconstruct reality, and 5. Report results. RESULTS: The implementation and outcomes of the "5Rs of Reorganization" process are described for one pediatric rehabilitation center to illustrate how use of this process led to effective service delivery reorganization planning. The resulting multi-component customized service delivery plan reflects high levels of stakeholder involvement. CONCLUSIONS: Principles of project management can be applied to support service delivery reorganization planning within pediatric rehabilitation centers using the "5Rs of Reorganization." Strong communication throughout the planning phase is key to developing and sharing a plan for service delivery reorganization. Communication can be supported through use of the 5R process.

Is Health Related Quality Of Life of people living with chronic conditions related to patient satisfaction with care?

UNLABELLED: More than 50% of people over the age of 30 live with at least one chronic condition that influences their Health Related Quality of Life (HRQOL). No uniform framework for conceptualization of HRQOL is currently recognized, although several important domains have been identified. Recently, satisfaction with care has been suggested as an important component to be included in the measures of HRQOL. PURPOSE: The objective of this review is to explore what is known from the literature about the relationship between satisfaction with care and HRQOL in patients living with chronic conditions. METHODS: A scoping review methodology guided this work. RESULTS: The results support the observation of a positive correlation between satisfaction with care and HRQOL; however, the directionality of the relationships could not be established. Although change in the way we organize and provide treatment might not be expected to lead to a significant change in functional performance of the individuals, we can potentially affect people's perception of disability, and improve their control and coping with the illness. CONCLUSIONS: The review highlights the importance of using appropriate and psychometrically sound measures when assessing HRQOL. Studies are needed that explore longitudinally the relationships between the care experiences and HRQOL.

Indicators of distress in families of children with cerebral palsy.

PURPOSE: To describe family distress as reported by parents of children with cerebral palsy (CP) and to identify factors associated with distress. METHOD: In this descriptive, historical cohort study, parents of school-age children (9.2 ± 2.1 years) with CP completed the Parenting Stress Index, the Impact on Family Scale and family-related items on the Child Health Questionnaire. Predictor variables considered were sociodemographic factors, motor, cognitive and behavioral difficulties and functional limitations. These were assessed using the Gross Motor Function Measure, Leiter IQ, Strengths and Difficulties Questionnaire and Vineland Adaptive Behavior Scale. RESULTS: Parents of 95 children were recruited, of whom 45% were highly stressed and 11% defensive. Half indicated that their child's health impacted on their time, emotional status and family activities. Family distress measures were modestly associated with motor (r = 0.30-0.48) and cognitive abilities (r = 0.29-0.37) but more strongly correlated with particular behavioral difficulties (r = -0.42 to 0.55). Activity limitations across domains were highly associated with measures of distress. CONCLUSIONS: Parents of school-aged children with CP are likely to experience high stress, increased time constraints and financial and psychological burden. Findings illustrate the need to monitor family functioning intermittently as the child develops and direct appropriate resources to optimize child and family well-being.

Ovulation inhibition doses of progestins: a systematic review of the available literature and of marketed preparations worldwide.

BACKGROUND: The objective of this analysis was to provide a comprehensive review of ovulation inhibition data of progestins currently available worldwide. This analysis may serve as a reference tool for research on new progestin molecules. STUDY DESIGN: We used literature search engines to detect data of progestin monotherapies on ovulation inhibition in humans. Only treatments with stable dosing during a cycle were accepted. In a second step, we tried to estimate the 99% ovulation inhibiting doses and their fiducial confidence limits using the probit dose-response model. Finally, we analyzed the progestin doses of combined oral contraceptives currently on the market. RESULTS: We found original data on 29 marketed and nonmarketed progestins in a total of 60 publications, published between 1956 and May 2010. Details on methods used for determining ovulation, number of doses and daily dose of each tested progestin, number of subjects, cycles and ovulations are summarized in a table. We designed one example of a dose-response curve using the statistical model. For most progestins, literature data were insufficient for this purpose. A total of 13 progestins are components of oral contraceptives currently on the market worldwide, five of them in combination with 20 mcg ethinyl estradiol (EE). CONCLUSION: This review provides a comprehensive overview of all progestins ever tested for their ovulation inhibition potency and a summary of all preparations currently on the world market, including their regimens and their combinations with EE.

Exploring issues of participation among adolescents with cerebral palsy: what's important to them?

The purpose of this cross-sectional study was to determine what participation issues are important to adolescents with cerebral palsy (CP). Two hundred and three adolescents with CP (mean age 16.0 ± 1.8 years) were assessed using the Canadian Occupational Performance Measure (COPM). This was done through semistructured interviews by trained physical and occupational therapists. Adolescents responded either directly (n = 144) or through a parent or a caregiver (n = 59) if they were unable to communicate. Issues were extracted from completed questionnaires and coded under three COPM categories (self-care, productivity, and leisure) and 16 subcategories. There was no association between the total number of issues identified and gender (p = .99), age (p = .88), type of respondent (adolescents versus parent) (p = .27), Gross Motor Function Classification System (GMFCS) level (p = .93), or 66-item Gross Motor Function Measure (GMFM-66) score (p = .45). The issues identified most frequently were related to active leisure (identified by 57% of participants), mobility (55%), school (48%), and socialization (44%). Interventions aimed at improving participation among adolescents with physical disabilities, such as CP, should be directed towards these four key areas. Health care professionals should also recognize and consider the interaction of person and environment when addressing issues related to participation.

Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument.

AIM: There are many misconceptions about what constitutes 'quality of life' (QoL). It is often difficult for researchers and clinicians to determine which instruments will be most appropriate to their purpose. The aim of the current paper is to describe QoL instruments for children and adolescents with neurodisabilities against criteria that we think are important when choosing or developing a QoL instrument. METHOD: QoL instruments for children and adolescents with neurodisabilities were reviewed and described based on their purpose, conceptual focus, origin of domains and items, opportunity for self report, clarity (lack of ambiguity), potential threat to self-esteem, cognitive or emotional burden, number of items and time to complete, and psychometric properties. RESULTS: Several generic and condition-specific instruments were identified for administration to children and adolescents with neurodisabilities - cerebral palsy, epilepsy and spina bifida, and hydrocephalus. Many have parent-proxy and self-report versions and adequate reliability and validity. However, they were often developed with minimal involvement from families, focus on functioning rather than well-being, and have items that may produce emotional upset. INTERPRETATION: As well as ensuring that a QoL instrument has sound psychometric properties, researchers and clinicians should understand how an instrument's theoretical focus will have influenced domains, items, and scoring.

A measure of community members' perceptions of the impacts of research partnerships in health and social services.

Currently, there are no psychometrically sound outcome measures by which to assess the impacts of research partnerships. This article describes the development of a 33-item, survey questionnaire measuring community members' perceptions of the impact of research partnerships addressing health or social issues. The Community Impacts of Research Oriented Partnerships (CIROP) was developed using information from the literatures on health promotion, community development, research utilization, and community-based participatory research, and from focus groups involving 29 key informants. Data from 174 community members were used to determine the factor structure, internal consistency, and test-retest reliability of the four CIROP scales, and to provide evidence of construct validity. The CIROP informs research partnerships about the extent of their impact in the areas of Personal Knowledge Development, Personal Research Skill Development, Organizational/Group Access To and Use of Information, and Community and Organizational Development, allowing them to demonstrate accountability to funding bodies. As well, the CIROP can be used as a research tool to assess the effectiveness of knowledge sharing approaches, determine the most influential activities of research partnerships, and determine structural characteristics of partnerships associated with various types of impact. The CIROP provides a better understanding of community members' perspectives and expectations of research partnerships, with important implications for knowledge transfer and uptake.

Participation and enjoyment of leisure activities in school-aged children with cerebral palsy.

The objective of this study was to characterize participation in leisure activities in children with cerebral palsy (CP) and identify determinants of greater involvement. Ninety-five children of school age (9y 7mo [SD 2y 1mo]) with CP were recruited, and participation was evaluated with the Children's Assessment of Participation and Enjoyment in a subset (67/95; 42 males, 25 females) who could actively participate in completion of the assessment. Most had mild motor dysfunction (Gross Motor Function Classification System: 59% level I, 23% level II, 18% levels III-V) and had a spastic subtype of CP (23 hemiplegia, 17 diplegia, 16 quadriplegia, 11 other). Biomedical, child, family and environmental predictor variables were considered in the analysis. Results demonstrated that these children were actively involved in a wide range of leisure activities and experienced a high level of enjoyment. However, involvement was lower in skill-based and active physical activities as well as community-based activities. Mastery motivation and involvement in rehabilitation services enhanced involvement (intensity and diversity) in particular leisure activities, whereas cognitive and behavioral difficulties, activity limitations, and parental stress were obstacles to participation.

A home for medically complex children: the role of hospital programs.

The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care services. Despite concerted efforts to apply the medical home concept to the care of children with special healthcare needs, many barriers to its implementation still exist, in particular, for the subset of children with special healthcare needs who are medically complex. Applying the medical home concept to hospital-based care coordination may benefit both children with complex conditions and their families, as well as the community-based providers.