Parent Partnerships in Communication and Decision Making About Subspecialty Referrals for Children With Special Needs

Fischer, Shira H.; Pelle, Nancy La; Dworetzky, Beth; Mazor, Kathleen M.; Cooley, W. Carl

doi:10.1016/j.acap.2012.12.003

Cited by 27 publications

(20 citation statements)

References 18 publications

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“…To increase coordination between pediatric primary care and EI systems, many state and professional organizations have launched educational initiatives targeted for pediatricians and EI clinicians. 33,34 Use of information technology (eg, shared electronic health records and patient Web portals) 35 or brief referral plans and checklists 36 further enhances communication between pediatricians and EI clinicians. Moreover, family navigators can facilitate EI use by providing families emotional support, family-centered and developmentally-focused anticipatory guidance, and logistical assistance.…”

Section: Theme 5: Limited and Conflicting Informationmentioning

confidence: 99%

Beliefs Regarding Development and Early Intervention Among Low-Income African American and Hispanic Mothers

et al. 2017

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Section: Theme 5: Limited and Conflicting Informationmentioning

confidence: 99%

Beliefs Regarding Development and Early Intervention Among Low-Income African American and Hispanic Mothers

et al. 2017

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“…Regarding the second theme, DM has been regarded as an aspect of the care plan 29,30,[43][44][45][46] . The planning of care for children with chronic conditions can go towards the market-based care model or the "care-producing" model.…”

Section: Discussionmentioning

confidence: 99%

“…Almost half of the studies had as one of the objectives the analysis of decisions about the care given to children with chronic diseases [26][27][28][29][30][31][32][33][34][35][36][37][38][39][40][41] . Those who would not refer to the decisions in the objectives, brought this subject in the results and discussions, which could point to a finding linked to the object of study, that is, a discovery worthy of discussion.…”

Section: Descriptorsmentioning

confidence: 99%

Tomando decisões na atenção à saúde de crianças/adolescentes com condições crônicas complexas: uma revisão da literatura

Fernandez

Moreira

Gomes

2019

Ciênc. saúde coletiva

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Resumo O perfil da assistência pediátrica passou por mudanças no Brasil e no mundo. Essa mudança se torna mais visível em pesquisas que tratam de dados de internação hospitalar ou de atenção ambulatorial especializada. Esse fato nos encaminha à ideia de que é nesses espaços que essas crianças e sujeitos que delas cuidam são mais visíveis e negociam decisões. Objetivamos, através de uma revisão da literatura, analisar o estado da arte das discussões e das definições sobre tomada de decisão, fazendo uma interpretação do material produzido à luz das perspectivas teóricas de Mol sobre as lógicas que se desenham a partir dos atores e de suas redes no que se refere à atenção às doenças crônicas; e a perspectiva das trocas de bens de cuidado no diálogo entre Martins e Moreira, acionando a Teoria da Dádiva. Concluímos que a tomada de decisão pode ser entendida como um processo de planejamento de cuidado onde participam familiares, pacientes e profissionais de saúde e está ligada ao modelo de cuidado centrado na família. Como dificuldades, citamos a predominância de uma lógica que privilegia uma escolha digna de crítica por oferecer risco de iniquidades, como a não discussão das opções de escolha e o acionamento das famílias prioritariamente em momentos de decisões difíceis.

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“…To achieve these outcomes, families desire processes that are timely, efficient, coordinated, transparent, reliable, effective, and personalized. Recent focus on interventions to improve shared decision making 6 and care coordination 12 have the potential to address some of these domains, particularly during face-to-face subspecialty visits. Further attention, however, is needed to pre and post-visit processes in order for families to schedule appointments and communicate follow-up needs in a more patient-centered system.…”

Section: Discussionmentioning

confidence: 99%

“…Prior studies have focused on parent perspectives of specific aspects of subspecialty referrals, such as information exchange, shared decision making, and continuity of care, 6–8 but have not examined the broader experiences and preferences of families receiving subspecialty care. Relatedly, a recent systematic review found that the majority of measures in studies of subspecialty referrals focused on referral initiation, subspecialist accessibility, and appointment attendance rather than patient experiences, patient satisfaction, or health outcomes, 9 indicating that family perspectives also received little weight in prior evaluations of subspecialty referrals.…”

Section: Introductionmentioning

confidence: 99%

Family Perspectives on High-Quality Pediatric Subspecialty Referrals

Ray

Ashcraft

Kahn

et al. 2016

Academic Pediatrics

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Objective Although children are frequently referred to subspecialist physicians, many inadequacies in referral processes have been identified from physician and system perspectives. Little is known, however, about how to comprehensively measure or improve the quality of the referral systems from a family-centered perspective. To foster family-centered improvements to pediatric subspecialty referrals, we sought to develop a framework for high-quality, patient-centered referrals from the perspectives of patients and their families. Methods We used stakeholder-informed qualitative analysis of parent, caregiver, and patient interviews to identify outcomes, processes, and structures of high-quality pediatric subspecialty referrals as perceived by patients and their family members. Results We interviewed 21 informants. Informants identified five desired outcomes of subspecialty referrals: improved functional status or symptoms; improved long-term outcomes; improved knowledge of their disease; informed expectations; and reduced anxiety about the child’s health status. Processes that informants identified as supporting these outcomes centered around six key steps in subspecialty referrals, including the referral decision, pre-visit information transfer, appointment scheduling, subspecialist visit, post-visit information transfer, and ongoing care integration and communication. Health care delivery structures identified by informants as supporting these processes included physical infrastructure, human resources, and information technology systems. Conclusion We identified family-centered outcomes, processes, and structures of high-quality pediatric subspecialty referrals. These domains can be used not only to improve measurement of the quality of existing referral systems but also to inform future interventions to improve patient-centered outcomes for children in need of specialty care.

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Parent Partnerships in Communication and Decision Making About Subspecialty Referrals for Children With Special Needs

Cited by 27 publications

References 18 publications

Beliefs Regarding Development and Early Intervention Among Low-Income African American and Hispanic Mothers

Beliefs Regarding Development and Early Intervention Among Low-Income African American and Hispanic Mothers

Tomando decisões na atenção à saúde de crianças/adolescentes com condições crônicas complexas: uma revisão da literatura

Family Perspectives on High-Quality Pediatric Subspecialty Referrals

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