Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities

Zajicek-Farber, Michaela L.; Lotrecchiano, Gaetano R.; Long, Toby; Farber, Jon Matthew

doi:10.1007/s10995-015-1688-z

Cited by 24 publications

(26 citation statements)

References 69 publications

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“…The multidimensional care required to manage multiple condition-related needs [12,15,19,23,25,35,42,44,46,51,61,76,82,86,96,99,107,122,123,125,128,131,133,145,150], in the context of developmental, social, and psychological needs, emerged as a key feature of children's CCNs [46,54,61,63,71,149]. Heterogeneous combinations of high-intensity needs [25,33,40,42,45,51,54,76,79,96,98,99,103,128,131,145] spanned a wide range of care, including nutritional [1,10,11,21,25,32,69,76,…”

Section: Heterogeneous and Substantialmentioning

confidence: 99%

“…Further, there was strong cross-disciplinary consensus that social and community service developments had not kept pace with medical progress [19,54,60,69,96,99,107,131,137,143]. This shortfall included training and workforce development for healthcare professionals whose job descriptions had rapidly evolved in a climate of advancement and cost containment [4,8,17,46,61,95,149].…”

Section: Medical Advancesmentioning

confidence: 99%

“…,40, 45, 46, 60, 61, 68, 69, 77,87,92,95,103,141,149]. In particular, this pertains to issues of race[10, 55, 65,91], ethnicity[4, 10, 57, 73, 74, 80,102], geographical location[4, 16, 20, 34, 50,95,119,150], language[4, 16, 18, 28, 39, 41, 48, 57,87,150], and culture[1,4, 21, 39, 44, 46, 54, 57, 66,102,136].…”

mentioning

confidence: 99%

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Children’s complex care needs: a systematic concept analysis of multidisciplinary language

et al. 2018

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Complex care in the arena of child health is a growing phenomenon. Although considerable research is taking place, there remains limited understanding and agreement on the concept of complex care needs (CCNs), with potential for ambiguity. We conducted a systematic concept analysis of the attributes, antecedents, and consequences of children's CCNs from a multidisciplinary perspective. Our data sources included PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. Inclusion criteria included publications in peer-reviewed journals between January 1990 and December 2017, written in the English language. One hundred and forty articles were included. We found that children's CCNs refer to multidimensional health and social care needs, in the presence of a recognized medical condition or where there is no unifying diagnosis.Conclusion: Children's CCNs are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. There remain extensive challenges to caring for these children and their families, precluding the possibility that any one profession can possess the requisite knowledge or scope to singularly provide high-quality competent care. What is Known: • Complex care is a growing phenomenon and population prevalence figures show that there is an increasing number of children with complex care needs (CCNs). However, the concept has not been systematically analyzed before, leaving it generally ill-defined and at times confusing. What is New: • This is the first time this concept has been systematically analyzed and this analysis provides a much-needed theoretical framework for understanding the multidimensional nature of CCNs in children. • Children's CCNs refer to multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis. They are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. It is clear that the very nature of CCNs precludes the possibility that any one profession or discipline can possess the requisite knowledge or scope for high-quality competent care for this population.

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Section: Heterogeneous and Substantialmentioning

confidence: 99%

Section: Medical Advancesmentioning

confidence: 99%

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Children’s complex care needs: a systematic concept analysis of multidisciplinary language

et al. 2018

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“…At times, many parents describe frustration with complex health care systems, limited resource availability and location of services, and inconsistent information delivery (Carbone et al, 2010). The systematic approach that PFCC provides can address these challenges by building and sustaining stronger parent-PCP alliances, which enhance parent empowerment (Zajicek-Farber et al, 2015). The stresses that parents experience decreases as "family centered services improve resilience of families of children with autism" (Carbone et al, 2010, p.).…”

Section: Patient and Family Centered Carementioning

confidence: 99%

“…Parents decision-making and decision-taking behaviours linked to intervention choice for their child can help to reduce stress. The PCP has a role in supporting parental decision-making by providing timely, transparent information to parents (Zajicek-Farber et al, 2015). However, for a PFCC approach to be successful it is important that both the parent and provider have a basic understanding of their respective roles in care (Pelzang, 2010).…”

Section: Patient and Family Centered Carementioning

confidence: 99%

Primary care strategies for supporting parents of children with suspected autism spectrum disorder

Salih¹

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ASD is a complex neurobiological disorder requiring early childhood intervention to mitigate effects on overall quality of life. Without early intervention, individuals and families are impacted socially, emotionally and economically. In BC, wait lists for a formal assessment and diagnosis are longer than a year. Parents of children with suspected ASD are often left in an anticipatory waiting phase once ASD is suspected. They require guidance on learning what ASD is, developing knowledge about treatment approaches, and determining what resources and supportive measures are available to them. The mainstay approach to assessment is initially via a primary care provider. As such, the primary care provider (PCP) is the first source of guidance when concerns about a child are raised, and is responsible for referring the child for diagnosis, and providing parents direction on where to obtain interventional therapies. However, there is limited guidance on how to support parents during the anticipatory period of time between suspicion of symptoms and diagnosis. The aim of this project is to explore strategies that enable PCPs when caring for parents of children with suspected ASD. An integrative literature review was conducted, which included ten carefully selected articles. Two major themes were identified, which focused on concepts of knowledge and communication. Knowledge linked to the PCP included the need for up-to-date developmental, clinical, communication understanding and tacit knowledge. Communication is essential during waiting and early diagnosis, and in aspects of PCP availability, multidisciplinary collaboration and supportive decision-making. These key aspects help to prepare families to flourish in their recreation of family life. Attention to parent health and wellbeing is critical, as is the need to discuss difficult topics such as emotional stress and service limitations. Patient and family centred care (PFCC) is reported as a health care model that illuminates the importance of respect, rapport and trust, while affording accord, equity and collaboration. Using the PFCC model as a polestar, the PCP can navigate care focusing on cocreating longer term relationships between primary care, parents, interventions teams and early education partners.

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A systematic concept analysis of ‘technology dependent’: challenging the terminology

et al. 2020

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There are an increasing number of children who are dependent on medical technology to sustain their lives. Although significant research on this issue is taking place, the terminology used is variable and the concept of technology dependence is ill-defined. A systematic concept analysis was conducted examining the attributes, antecedents, and consequences of the concept of technology dependent, as portrayed in the literature. We found that this concept refers to a wide range of clinical technology to support biological functioning across a dependency continuum, for a range of clinical conditions. It is commonly initiated within a complex biopsychosocial context and has wide ranging sequelae for the child and family, and health and social care delivery. Conclusion: The term technology dependent is increasingly redundant. It objectifies a heterogenous group of children who are assisted by a myriad of technology and who adapt to, and function with, this assistance in numerous ways.

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Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities

Cited by 24 publications

References 69 publications

Children’s complex care needs: a systematic concept analysis of multidisciplinary language

Children’s complex care needs: a systematic concept analysis of multidisciplinary language

Primary care strategies for supporting parents of children with suspected autism spectrum disorder

A systematic concept analysis of ‘technology dependent’: challenging the terminology

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