Principles for provision of integrated complex care for children across the acute–community interface in Europe

Brenner, Maria; O’Shea, Miriam; McHugh, Rebecca S.; Clancy, Anne; Larkin, Philip; Luzi, Daniela; Pecoraro, Fabrizio; Olaso, Elena Montañana; Lignou, Sapfo; Alma, Manna; Satherley, Rose‐Marie; Tamburis, Oscar; Warters, Austin; Wolfe, Ingrid; Hilliard, Carol; Berry, Jay G.; Alexander, Denise; Rigby, Michael; Blair, Mitch

doi:10.1016/s2352-4642(18)30270-0

Cited by 25 publications

(21 citation statements)

References 20 publications

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“…However, while parents often become very good clinical problem solvers [ 112 ], they have identified specific areas for greater support when planning for discharge. This includes support for ongoing self-directed learning once they are at home, greater support to deal with the myriad of financial concerns, and greater flexibility in the level and amount of care delivery made available to them [ 71 , 101 , 105 – 107 , 116 ]. The impact on siblings adapting to living with a child who is technology dependent is increasingly being documented in the literature.…”

Section: Resultsmentioning

confidence: 99%

“…The stress of moving out of PICU and the realignment of care expectations has been identified as a period of significant stress for parents [71]. General concerns when planning to move to home includes parents' stress about becoming a clinician in the home and stress about the potential for equipment malfunction [24,68,71,[93][94][95][96][97][98][99][100][101][102][103][104][105][106][107]. Specific challenges identified include grieving for a well child [71]; learning to master care delivery in a variety of settings [108]; guilt over having less time with the other children at home or relying on them for assistance in care giving [109]; causing pain to their child when carrying out clinical procedures [109][110][111][112]; concern over sleep disturbance [108,113]; and difficulty accessing and delivering a large number of medications [24].…”

Section: Family Adaptationmentioning

confidence: 99%

“…This includes challenges in the development of integrated care for this cohort of children and co-creation of integrated care with children and their families [106,107,113,123]. Care delivery across acute and community care services can be complicated by inconsistent standards for discharge to home [107,[124][125][126][127]. Specific areas that could enhance care delivery include enhanced access to specialist care, including same-day appointments to appropriately trained physicians in the community [80,128,129]; increased use of telehealth, electronic records, and patient summaries [130,131]; specialist home care visits in the initial week following discharge to home [81]; and increased access to respite care in and out of the home [103,113,[130][131][132][133][134][135][136].…”

Section: Ongoing Impact For Health and Social Carementioning

confidence: 99%

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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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Section: Resultsmentioning

confidence: 99%

Section: Family Adaptationmentioning

confidence: 99%

Section: Ongoing Impact For Health and Social Carementioning

confidence: 99%

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

et al. 2020

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“…The onward development of metrics in the community will need to reflect these changes and will also need to reflect the fact that Ireland is currently initiating substantial changes in the care of children with complex care needs. This is informed by developments in this area at European level identifying the need for enhanced integrated care services for children (Brenner, O'Shea, Larkin et al, ; Brenner, O'Shea, McHugh et al, ) and supported at national level through the strategic HSE policy imperative SlainteCare which recommends the re‐orientation of the healthcare system towards integrated care consistent with the highest quality of patient safety (Houses of the Oireachtas, ).…”

Section: Discussionmentioning

confidence: 99%

Development of a suite of metrics and indicators for children’s nursing using consensus methodology

Brenner

Browne

Gallen³

et al. 2019

Journal of Clinical Nursing

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Aim and objectives To develop a suite of metrics and indicators to measure the quality of children's nursing care processes. The objectives were to identify available metrics and indicators and to develop consensus on the metrics and indicators to be measured. Background The Office of Nursing and Midwifery Services Director, Health Service Executive, in Ireland established seven workstreams aligned to the following care areas: acute, older persons, children's, mental health, intellectual disability, public health nursing and midwifery. Design A comprehensive design included stakeholder consultation and a survey with embedded open‐ended questions. Methods A two‐round online Delphi survey was conducted to identify metrics to be measured in practice, followed by a two‐round online Delphi survey to identify the associated indicators for these metrics. A face‐to‐face consensus meeting was held with key stakeholders to review the findings and build consensus on the final metrics and indicators for use. A STROBE checklist was completed. Results A suite of eight nursing quality care process metrics and 67 associated process indicators was developed for children's nursing. Conclusions By creating a national suite of metrics and indicators, more robust measurement and monitoring of nursing care processes can be achieved. This will enable the provision of evidence for any local and/or national level changes to policy and practice to enhance care delivery. Relevance to clinical practice The roll‐out of the metrics and indicators in clinical practice has commenced. This national suite of metrics and indicators will ensure that a robust system of measurement for improvement is in place to provide assurance to Directors of Nursing of the quality of nursing care being provided to children and their families. It supports the value of nursing sensitive data to inform change and improvement in healthcare delivery and to demonstrate the contribution of the nursing workforce to safe patient care.

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“…TBI in children comes under the growing phenomenon of complex care, because of these symptoms changing over time [7,22]. Brenner et al [23] highlighted that complex care needs in children are dynamic and continuing over time, with TBI firmly situated within this area.…”

Section: Introductionmentioning

confidence: 99%

Well siblings’ experiences of living with a child following a traumatic brain injury: a systematic review protocol

Hill

Brenner

2019

Syst Rev

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Background: The aim of this systematic review is to synthesize the available evidence identified through a systematic search on well siblings' experiences of living with a child following a traumatic brain injury (TBI). Brain injuries in children have been referred to as the "silent epidemic" of current times. Brain injuries in children are also recognized as a global public health concern, with the impact on children, effects on family life, and caregiving markedly misunderstood and underestimated. It is widely recognized that a serious brain injury impacts on the whole family, both immediate and extended regardless of the age of the individual who experiences the brain injury. While some research refers to parental experiences of children with TBIs and caregivers experiences, there is a dearth of literature relating to the impact on well siblings and their perspectives. Well siblings' experiences regarding the impact of living with a child post-TBI are not well understood. In order to advance the delivery of family nursing care in the home, an understanding of the well siblings' experiences is fundamental. Methods: The search will be conducted using seven medical and healthcare databases for articles published up until February 2019. Two reviewers will independently screen the articles for inclusion and assess for study quality using the standardized critical appraisal instrument from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). Two reviewers will extract data from each study and carry out data analysis to uncover themes within the literature. Data synthesis of findings will be carried out using JBI-QARI. Discussion: It is anticipated that the findings of the proposed review will be of interest to health and social care professionals, particularly those working in units where children have suffered TBIs, their well siblings, and families. The aim is to identify well siblings' experiences which can inform enhanced care delivery to the families of children following a TBI. The findings of this review will provide evidence to aid professionals with the assessment of siblings' needs to enhance their sense of self within the family unit. Future directions, in addition to potential limitations of the approach, will be discussed.

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Principles for provision of integrated complex care for children across the acute–community interface in Europe

Cited by 25 publications

References 20 publications

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

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

Development of a suite of metrics and indicators for children’s nursing using consensus methodology

Well siblings’ experiences of living with a child following a traumatic brain injury: a systematic review protocol

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