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Background: Children with chronic medical conditions often experience limited opportunities for social experiences due to frequent hospitalizations and medical appointments. Computer technology can provide valuable opportunities for social inclusion through online communities. However, moderation has been shown to be an important component of safe and successful use. This paper explores the potential of a social media platform technology, Upopolis, to promote social connection and health‐related management for children with chronic medical conditions, as well as the role of the coordinators who support children's use. Methods: This study conducted qualitative in‐depth, semi‐structured telephone interviews with hospital‐based child life specialists across Canada who acted as coordinators for Upopolis. Thematic analysis was employed on verbatim interview transcripts. Results: Seven Upopolis coordinators (n = 7 female) from across Canada participated in six telephone interviews. Four themes were identified: First, Upopolis offered opportunities for connection (social and emotional) through receiving and giving support to others in similar situations. Second, Upopolis was considered safe and reliable for younger children (under 12) within the broader social media landscape. Third, Upopolis was a helpful resource for children to learn about medical diagnoses and procedures, as well as for expressing their experiences and reducing isolation. Fourth, participants identified that time, misuse of technology, and technical problems were challenges to the successful coordination of Upopolis. Conclusions: Children with chronic medical conditions were reported to use Upopolis to develop a greater social community. Specialized websites such as Upopolis have the potential to offer a safe online social networking opportunity where children can discuss what is happening to them, compared with other mainstream social media platforms. Given the increase in technology use in health and high usage of social media among children generally, these data can potentially inform the development and implementation of other specialist health‐related online platforms for children with chronic medical conditions. [ABSTRACT FROM AUTHOR]

Background Participating in everyday life is essential to the healthy development and emotional well-being of children. However, little is known about siblings of children with complex care needs (CCN), and their perspectives and experiences of participating in everyday life. The aim of this paper is to present research findings that add to our understanding of how siblings of children with CCN view and experience participation in everyday life. Methods To arrive at a detailed and accurate understanding of the siblings' perspectives and experiences, we used the qualitative research design of ethnography. Sixteen siblings (seven brothers, nine sisters) of children with CCN were recruited. The siblings ranged in age between 7 and 25 years, with a mean age of 14 years. All siblings took part in opened-ended interviews and completed ecomaps to describe how they participate. Five siblings also took part in the photovoice method. Analysis involved several iterative steps, congruent with ethnography. Results Four main themes emerged as follows: (1) participation is about being part of a group; (2) it feels good; (3) I love my sibling but...; and (4) promoting participation. Siblings of children with CCN identified challenges to participation and also described ways that they participate that relate to the care of their sibling. Conclusions Siblings prioritized the relationship with their sisters and brothers with CCN in their life, and a great deal of their participation was chosen with their sibling in mind. Sibling-to-sibling relationships were distinct and meaningful and, as a result, participation was always done mindfully and with the family needs at the forefront. Nonetheless, clinicians caring for children with CCN must keep in mind the challenges that siblings of children with CCN experience and provide strategies to siblings that will help to promote their participation in everyday life. [ABSTRACT FROM AUTHOR]

Background Over the past two decades, there is increasing emphasis being placed upon providing family-centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. Methods This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post-diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line-by-line, focused and theoretical coding, and the use of the constant comparison method. Results Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co-ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health-related information directly with their child. Conclusions In order to successfully provide family-centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit. [ABSTRACT FROM AUTHOR]

Background: Addressing barriers in the environment can contribute to health and quality of life for children with disabilities and their families. The Community Health Inclusion Index (CHII) is a measurement tool developed in the United States to identify environmental barriers and facilitators to community health inclusion. The CHII adopts an adult viewpoint and aspects crucial for children may have been omitted. Aims: This study aimed to develop a comprehensive list of items that are relevant for the community inclusion of children with disabilities in the Canadian context. Methods: The relevance and priority of items generated from a review of existing guidelines and best practice recommendations for community inclusion were rated as a dichotomous response and discussed by an expert panel in relevant fields related to children with disabilities. Results: A total of 189 items from 12 instruments and best practice guidelines were identified. Expert consensus contributed to a relevant and comprehensive list of items. Expert suggestions were considered to refine and reduce the item list. Conclusion: This study highlights the importance of a child version of a community inclusion tool, as the needs of children with disabilities differ from those of adults. It can help communities improve inclusion of children with disabilities and inform health promotion initiatives for this population. [ABSTRACT FROM AUTHOR]

Background: Transitioning from pediatric to adult healthcare can be challenging and lead to severe consequences if done suboptimally. The Transition Readiness Assessment Questionnaire (TRAQ) was developed to assess adolescent and young adult (AYA) patients' transition readiness. In this study, we aimed to (1) document the psychometric properties of the French‐language version of the TRAQ (TRAQ‐FR), (2) assess agreements and discrepancies between AYA patients' and their primary caregivers' TRAQ‐FR scores, and (3) identify transition readiness contributors. Methods: French‐speaking AYA patients (n = 175) and primary caregivers (n = 168) were recruited from five clinics in a tertiary Canadian hospital and asked to complete the TRAQ‐FR, the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0), and a sociodemographic questionnaire. The validity of the TRAQ‐FR was assessed using confirmatory factor analyses (CFA). Agreements and discrepancies were evaluated using intraclass correlation coefficients and paired‐sample t tests. Contributors of transition readiness were identified using regression analyses. Results: The five‐factor model of the TRAQ was supported, with the TRAQ‐FR global scale showing good internal consistency for both AYA patients' and primary caregivers' scores (α =.85–.87). AYA patients and primary caregivers showed good absolute agreement on the TRAQ‐FR global scale with AYA patients scoring higher than primary caregivers (ICC =.80; d =.25). AYA patients' age and sex were found to be contributors of transition readiness. Conclusions: The TRAQ‐FR was found to have good psychometric properties when completed by both AYA patients and primary caregivers. Additional research is needed to explore the predictive validity and clinical use of the TRAQ‐FR. [ABSTRACT FROM AUTHOR]

Background: There is inconsistency across child development and care literature in operationalizing serious play‐related injury and also a lack of understanding of how mothers and fathers conceptualize serious play‐related injury. The current study explores parents' perspectives of their 2‐ to 7‐year‐old children's serious play‐related injuries in urban and rural areas of British Columbia and Québec, Canada, and provides an urban/rural and gender analysis of the results. Methods: We conducted semistructured interviews with 41 mothers and 63 fathers from 57 families, a total of 104 participants, in urban and rural locations in British Columbia and Québec, Canada. We used a social constructionist approach to the research and reflexive thematic analysis to construct themes from participant responses and to inform the consequent categorizations of serious play‐related injury. Results: The results indicate four categories of parents' conceptualizations of serious play‐related injury: (a) injury requiring medical intervention, (b) injury resulting in head trauma, (c) injury resulting in debilitation, and (d) broken bones. Conclusions: Child development and care advocates can use these categories to strengthen their communications with parents and to improve understanding of parents' conceptualizations of children's serious play‐related injury. [ABSTRACT FROM AUTHOR]

Background Despite the benefits of Neonatal Follow-Up ( NFU) programs for infants at risk for developmental problems subsequent to preterm birth, non-attendance continues to be a problem within Canada and beyond. This study investigated the barriers and facilitators to attendance at Canadian NFU programs from mothers' and health care providers' ( HCP) perspectives. Methods In this multi-site qualitative descriptive study, we conducted semi-structured individual interviews with 12 mothers, six from each of two NFU programs; and focus groups with 20 HCPs from nine NFU programs. Interviews were audio-recorded and transcribed and then subjected to thematic analysis. Results The predominant barriers represented a complex interplay of cumulative factors: mothers' isolation and feeling overwhelmed, with limited support, experiencing difficulty attending because of limited resources, who viewed NFU as not needed until problems arose for their child. Other barriers included vulnerability and fear of bad news. Mothers reported the need to protect their vulnerable child from risks, whereas HCPs reported creating vulnerability by monitoring the child's development over time. HCPs perceived fear of bad news as a barrier, whereas mothers viewed that impending bad news increased their need to attend to address the issue. The predominant facilitators were support, family centred-care and mothers with adequate resources. Conclusions Attendance is most problematic for mothers with limited support, capacity and resources. First and foremost, targeted approaches to NFU service provision are needed to address the cumulative barriers and improve experiences for mothers who find it difficult to attend NFU. A continuous relationship with a single point of contact is needed and merits further investigation - a provider who works across the traditional silos of neonatal intensive care, NFU and community services, minimizes duplication and navigates transitions. [ABSTRACT FROM AUTHOR]

Aim To develop a generic self-management skills scale for use with adolescents diagnosed with a chronic health condition who are aged 12 to 18 years. Background There is a lack of methodologically sound scales for healthcare teams to use to measure self-management skills in adolescents with chronic conditions transitioning to adult care. Methods Adolescents aged 12 to 18 years with a broad range of chronic health conditions, including neurodevelopmental conditions, were recruited from May to August 2013 from nine outpatient clinics at Mc Master Children's Hospital ( Canada). Thirty-two participated in a cognitive interview, and 337 completed a questionnaire booklet. Interviews were used to develop the TRANSITION- Q. Rasch measurement theory ( RMT) analysis was used to identify items that represent the best indicators of self-management skills. Traditional psychometric tests of measurement performance were also conducted. Results The response rate was 92% (32/32 cognitive; 337/371 field test). RMT analysis resulted in a 14-item scale with three response options. The overall fit of the observed data to that expected by the Rasch model was non-significant, providing support that this new scale measured a unidimensional construct. Other tests supported the scale as scientifically sound, e.g. Person Separation Index = 0.82; good item fit statistics; no differential item function by age or gender; low residual correlations between items; Cronbach's alpha = 0.85; test-retest reliability = 0.90; and tests of construct validity that showed, as hypothesized, fewer skills in younger participants and in participants who required assistance to complete the scale. Finally, participants who agreed they are ready to transfer to adult healthcare reported higher TRANSITION- Q scores than did participants who disagreed. Conclusions The TRANSITION- Q is a short, clinically meaningful and psychometrically sound scale. This generic scale can be used in research and in paediatric and adolescent clinics to help evaluate readiness for transition. [ABSTRACT FROM AUTHOR]

This study described the process used in developing an outcome measurement framework for system planning to improve services for children and youth with special needs and their families in a Canadian province. The study reports the results of several parent-completed measures, which would be useful in service planning as well as the acceptability and utility of these measures for use by families and service centres. Methods/results Development of a theoretical framework, consultation with key stakeholders, testing the utility of selected outcome measures and initial dissemination of results were critical elements in the successful development of an outcome system. Consultation with stakeholders confirmed use of the International Classification of Functioning, Disability and Health and the child-within-family-within community model as theoretical frameworks while building valuable partnerships and identifying potential barriers to implementation. Pilot testing showed three outcome measures were feasible for families to complete and the measures provided information about services for children that was valuable to families as well as service providers. Gaps in service delivery were identified and the need for better communication between service providers and communities to facilitate integrated services was highlighted. Conclusion The findings from this study can be used to implement an outcome measurement system for children with special needs and may serve as a resource for international researchers who are working to develop valid tools as well as outcome systems that are useful for system planning. [ABSTRACT FROM AUTHOR]