Keeping It Together<sup>TM</sup>: an information KIT for parents of children and youth with special needs

Stewart, Debra; Law, Mary; Burke-Gaffney, Jan; Missiuna, Cheryl; Rosenbaum, Peter; King, Gillian; Moning, Therese; King, Susanne

doi:10.1111/j.1365-2214.2006.00619.x

Cited by 25 publications

(36 citation statements)

References 16 publications

(16 reference statements)

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“…Moreover, despite various reminders, our response rates for families are among the lowest reported in the literature; two studies report rates below 30% [35,37], while others have reported rates over 65% [26,28]. The type and the quantity of rehabilitation services received by the family in the previous year could influence families' willingness to respond.…”

Section: Discussionmentioning

confidence: 72%

Reorganizing pediatric rehabilitation services to improve accessibility: do we sacrifice quality?

Camden

Swaine

Tétreault

et al. 2010

BMC Health Serv Res

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BackgroundThe impact of a pediatric rehabilitation service delivery reorganization to improve access to services on parents' and service providers' perception of service quality was evaluated. Child-, family-, service- and service provider-related characteristics possibly associated with these perceptions were explored.MethodsPerceptions were measured using the Measure of Processes of Care tools and open ended questions before (2007), during (2008) and following (2009) service reorganization. Child and family characteristics, services received and service provider data were documented. Mean MPOC scores were compared over time (ANOVAs and Generalized Estimating Equations) and t-tests, correlations and ANOVAs determined whether the characteristics influenced scores.ResultsFamilies' (n = 222) and service providers' (n = 129) perceptions of quality were high in 2007 (3.67 to 6.31/7) and remained high over the next 2 years (p ≥ 0.16). Two MPOC domain scores (Respectful care and Providing general information) were consistently scored the highest (mean ≥ 5.66/7) and the lowest (mean ≤ 4.75/7), respectively. Families with more education and those with children 12-21 years old tended to attribute lower MPOC scores. Participants were generally satisfied with the new service model and recommendations included improving information exchange.ConclusionsResults suggest that it is possible to reorganize pediatric rehabilitation services while maintaining quality.

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Section: Discussionmentioning

confidence: 72%

Reorganizing pediatric rehabilitation services to improve accessibility: do we sacrifice quality?

Camden

Swaine

Tétreault

et al. 2010

BMC Health Serv Res

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“…In order to fulfill this mandate, many of our research studies in the past have engaged youth with a disability or their family members as a collaborator and author (eg, The KIT “Keeping it Together,” Youth “KIT,” and Partnering for Change) [25-27]; however, we saw the opportunity to broaden our perspective by engaging a larger community of families to further address issues of importance to families, as well as create a community where there is an opportunity for ongoing meaningful dialogue.…”

Section: Discussionmentioning

confidence: 99%

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

Russell¹,

Sprung²,

McCauley³

et al. 2016

J Med Internet Res

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BackgroundEfforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships.ObjectiveOur objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families.MethodsThe Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members.ResultsThe PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group.ConclusionsThe PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.

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“…Care plans are used nationally and internationally and have been described in many different forms – from formal, clinician-developed comprehensive care plans to informal, parent-developed summaries of a child’s health [20,21,23,36]. This exploratory study offers positive preliminary findings that suggest that comprehensive care plans are a useful component of care for CMC, complementing emerging research in this area.…”

Section: Discussionmentioning

confidence: 96%

Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study

et al. 2013

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BackgroundThe Medical Home model recommends that Children with Special Health Care Needs (CSHCN) receive a medical care plan, outlining the child’s major medical issues and care needs to assist with care coordination. While care plans are a primary component of effective care coordination, the creation and maintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been studied. The purpose of this qualitative study was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children with medical complexity (CMC).MethodsThis qualitative study utilized in-depth semi-structured interviews and focus groups. HCPs (n = 15) and parents (n = 15) of CMC who had all used a comprehensive care plan were recruited from a tertiary pediatric academic health sciences center. Themes were identified through grounded theory analysis of interview and focus group data.ResultsA multi-dimensional model of perceived care plan usefulness emerged. The model highlights three integral aspects of the care plan: care plan characteristics, activating factors and perceived outcomes of using a care plan. Care plans were perceived as a useful tool that centralized and focused the care of the child. Care plans were reported to flatten the hierarchical relationship between HCPs and parents, resulting in enhanced reciprocal information exchange and strengthened relationships. Participants expressed that a standardized template that is family-centered and includes content relevant to both the medical and social needs of the child is beneficial when integrated into overall care planning and delivery for CMC.ConclusionsCare plans are perceived to be a useful tool to both health care providers and parents of CMC. These findings inform the utility and development of a comprehensive care plan template as well as a model of how and when to best utilize care plans within family-centered models of care.

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Keeping It Together^TM: an information KIT for parents of children and youth with special needs

Cited by 25 publications

References 16 publications

Reorganizing pediatric rehabilitation services to improve accessibility: do we sacrifice quality?

Reorganizing pediatric rehabilitation services to improve accessibility: do we sacrifice quality?

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study

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Keeping It TogetherTM: an information KIT for parents of children and youth with special needs

Cited by 25 publications

References 16 publications

Reorganizing pediatric rehabilitation services to improve accessibility: do we sacrifice quality?

Reorganizing pediatric rehabilitation services to improve accessibility: do we sacrifice quality?

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study

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Keeping It Together^TM: an information KIT for parents of children and youth with special needs