Managing change in the care of children with complex needs: healthcare providers’ perspectives

Law, James; McCann, Dolly; O’May, Fiona

doi:10.1111/j.1365-2648.2011.05761.x

Cited by 38 publications

(67 citation statements)

References 15 publications

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“…For many of these children, their reliance on technology demands a tailor-made service to ensure that care within the home is viable and sustainable [4]. Progress towards achievement of this goal has been slow [3] despite growing evidence that homecare: provides a means of mitigating the barriers and isolation children and their families experience during the transition from hospital to home, can significantly reduce hospital utilisation, and reduces the cost of care for children with complex care needs [56789].…”

Section: Introductionmentioning

confidence: 99%

The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review

Hillis¹,

Brenner²,

Larkin

et al. 2016

International Journal of Integrated Care

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Introduction:This systematic review seeks to identify the intended components of the role of care coordinator for children with complex care needs and the factors that determine its composition in practice.Theory and methods:The initial search identified 1,157 articles, of which 37 met the inclusion criteria. They were quality assessed using the SIGN hierarchy of evidence structure.Results:Core components of the role include: coordination of care needs, planning and assessment, specialist support, emotional support, administration and logistics and continuing professional development. Influencing factors on the role include the external environment (political and socio-economic), the internal environment (organisational structure and funding protocols), the skills, qualifications and experience of the coordinator, the family circumstances and the nature of the interaction between the care coordinator and the family.Discussion:The lack of consistent terminology creates challenges and there is a need for greater consensus on this issue. Organisations and healthcare professionals need to recognise the extent to which contextual factors influence the role of a care coordinator in practice and plan accordingly. Despite evidence that suggests that the role is pivotal in ensuring that care needs are sustained, there remains great variability in the understanding of the role of a care coordinator for this population.Conclusions:As the provision of care increasingly moves closer to home there is a need for greater understanding of the nature and composition of the interaction between care coordinators and families to determine the extent to which appropriate services are being provided. Further work in this area should take into consideration any potential variance in service provision, for example any potential inequity arising due to geographic location. It is also imperative, where appropriate, to seek the views of children with complex care needs and their siblings about their experiences.

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Section: Introductionmentioning

confidence: 99%

The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review

Hillis¹,

Brenner²,

Larkin

et al. 2016

International Journal of Integrated Care

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“…Children and young people affected by neurodisability have a range of impairments some of which are relatively minor, but many have complex healthcare needs. As a consequence, many are frequent and intensive users of the health system, and have contact with an average of at least ten different health professionals 5 6. Providing high-quality multidisciplinary services requires professionals to work collaboratively towards shared objectives 7.…”

Section: Introductionmentioning

confidence: 99%

Health outcomes for children with neurodisability: what do professionals regard as primary targets?

Janssens

Williams

Tomlinson

et al. 2014

Archives of Disease in Childhood

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“…Understanding the disease, treatment and technical aspects significantly reduces the levels of anxiety and stress among these caregivers. Thus, communication between the family and healthcare services is essential to provide knowledge and empower caregivers (4)(5) . Examples of the demand for care submitted include: development, meaning psychomotor and social follow-up with physical therapy and occupational therapy; modified normal care, including special care provided daily and go beyond the care required by a healthy child, such as constant monitoring of vital signs and oxygen saturation levels, technological upkeep, caring for the devices used to keep the child alive, and finally pharmaceutical care, as these children typically need constant medication (5) .…”

Section: Introductionmentioning

confidence: 99%

Criança dependente de tecnologia e a demanda de cuidado medicamentoso

et al. 2016

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Objective: to understand the experience of mothers of technology-dependent children as regards pharmaceutical care. Method: this was a qualitative, descriptive-exploratory study developed based on open interviews using a structured characterization tool, and applied during home visits to 12 mothers caring for technology-dependent children. The data was submitted to inductive content analysis. Results: this study is split into two themes: (i) maternal overload during pharmaceutical care, demonstrating the need to administer drugs continuously and the repercussions of this exhaustive care on the caregivers; (ii) the ease or diffi culty of access to the medicines required, showing informal strategies and support networks. Conclusion: pharmaceutical care is a daily challenge expressed in maternal overload and diffi culty accessing the drugs, made worse by failures in the care network and coordinated care. Descriptors: Pediatric Nursing; Caregivers; Child; Chronic Disease; Family. RESUMO Objetivo: compreender a vivência de mães de crianças dependentes de tecnologia em relação ao cuidado medicamentoso. Método: pesquisa qualitativa do tipo descritivo-exploratória, desenvolvida por meio de entrevistas abertas e aplicação de instrumento estruturado para caracterização, com 12 mães cuidadoras de crianças dependentes de tecnologia durante visita domiciliar. Os dados foram submetidos à análise de conteúdo indutiva. Resultados: organizados em dois temas: a sobrecarga materna diante do cuidado medicamentoso, que revelou a necessidade da administração de medicamentos de forma contínua e as repercussões desse cuidado exaustivo para as cuidadoras; e as difi culdades e facilidades no acesso aos medicamentos, apontando as estratégias informais e redes de apoio. Conclusão: o cuidado medicamentoso confi gura-se um desafi o diário expresso pela sobrecarga materna e difi culdade de acesso aos medicamentos, potencializado por falhas na constituição da rede de atenção e coordenação do cuidado. Descritores: Enfermagem Pediátrica; Cuidadores; Criança; Doença Crônica; Família. RESUMEN Objetivo: comprender la experiencia de las madres de niños dependientes de la tecnología para la atención médica. Método: estudio cualitativo de tipo descriptivo exploratorio desarrollado a través de entrevistas abiertas y aplicación de instrumento estructurado para la caracterización, con 12 madres cuidadoras de niños que dependen de la tecnología durante las visitas a domicilio. Los datos fueron sometidos a análisis de contenido inductivo. Resultados: organizados en dos temas: la sobrecarga de la madre en relación a la atención médica, que reveló la necesidad de una administración continua del medicamento y las repercusiones de esta atención agotadora para las cuidadoras; y las difi cultades y facilidades de acceso a los medicamentos, señalando las estrategias informales y Rev Bras Enferm [Internet]. 2016 jul-ago;69(4):671-7. 672Technology-dependent children and the demand for pharmaceutical care Okido ACC, et al.

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Managing change in the care of children with complex needs: healthcare providers’ perspectives

Cited by 38 publications

References 15 publications

The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review

The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review

Health outcomes for children with neurodisability: what do professionals regard as primary targets?

Criança dependente de tecnologia e a demanda de cuidado medicamentoso

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