Conflicting realities experienced by children with life‐limiting and life‐threatening conditions when transitioning to adult health services

Noyes, Jane; Pritchard, Shan; Pritchard, Aaron; Bennett, Virginia; Rees, Sally

doi:10.1111/jan.13811

Cited by 12 publications

(4 citation statements)

References 20 publications

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“…Previous research has largely focused on parental stress and coping (Darlington et al, 2018; Oakley et al, 2021; Senger et al, 2016). Studies internationally have mainly focused on the perception of services (Noyes et al, 2018; Parravicini et al, 2018). Of the limited research, Courtney et al (2018) explored mothers' experiences of caregiving when their child has a life-limiting neurodevelopmental disability and found that their overall experiences were characterized by a constant struggle.…”

Section: Introductionmentioning

confidence: 99%

‘Managing an unexpected life - a caregiver’s career’: Parents’ experience of caring for their child with a non-malignant life-limiting condition

Price

Hurley

Kiernan

2022

J Child Health Care

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Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper explores the prevalent and all-consuming experiences of parents caring for their children. A qualitative descriptive study design was used. Twenty-three parents (both mothers and fathers) were interviewed. Transcribed interview data were analyzed using thematic analysis. ‘Managing an unexpected life’ was the central concept when parents recounted ongoing efforts to address the emotional and practical effects of their child’s condition on their life and that of their family. Analysis revealed three main distinct but interrelated themes within the concept of ‘Managing an unexpected life’ helping us enhance our understanding of parents’ experiences: ‘Striving for normality’, ‘Becoming the expert’ and ‘Fighting for your child’. Findings suggest that the central concept of ‘Managing an unexpected life’ appeared to be in keeping with a caregiver’s career. Findings likewise suggest the need for improved and focused support and services to enhance parents’ career caregiving.

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Section: Introductionmentioning

confidence: 99%

‘Managing an unexpected life - a caregiver’s career’: Parents’ experience of caring for their child with a non-malignant life-limiting condition

Price

Hurley

Kiernan

2022

J Child Health Care

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“…Any comparison of post- and pre-transition care requires transition point to be defined, but there may not be a single well defined point of healthcare transition for all individuals [ 27 ]. As noted by the Centre’s Family Advisory Board, there are a number of other disruptive transitions beyond healthcare, such as transitions in social care, education and availability of health related benefits and support [ 61 ]. This study, using healthcare data, was unable to explore any of these issues, but they should be kept in mind when studying effects of healthcare transition as alternative or additional potential causes of observed changes.…”

Section: Discussionmentioning

confidence: 99%

Estimation of age of transition from children's to adult healthcare for young people with long term conditions using linked routinely collected healthcare data

Jarvis

Richardson

Flemming

et al. 2021

IJPDS

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IntroductionHealthcare transitions, including from paediatric to adult services, can be disruptive and cause a lack of continuity in care. Existing research on the paediatric-adult healthcare transition often uses a simple age cut-off to assign transition status. This risks misclassification bias, reducing observed changes at transition (adults are included in the paediatric group and vice versa) possibly to differing extents between groups that transition at different ages. ObjectiveTo develop and assess methods for estimating the transition point from paediatric to adult healthcare from routine healthcare records. MethodsA retrospective cohort of young people (12 to 23 years) with long term conditions was constructed from linked primary and secondary care data in England. Inpatient and outpatient records were classified as paediatric or adult based on treatment and clinician specialities. Transition point was estimated using three methods based on record classification (First Adult: the date of first adult record; Last Paediatric: date of last paediatric record; Fitted: a date determined by statistical fitting). Estimated transition age was compared between methods. A simulation explored impacts of estimation approaches compared to a simple age cut-off when assessing associations between transition status and healthcare events. ResultsSimulations showed using an age-based cut-off at 16 or 18 years as transition point, common in research on transition, may underestimate transition-associated changes. Many health records for those aged 14 years were classified as adult, limiting utility of the First Adult approach. The Last Paediatric approach is least sensitive to this possible misclassification and may best reflect experience of the transition. ConclusionsEstimating transition point from routine healthcare data is possible and offers advantages over a simple age cut-off. These methods, adapted as necessary for data from other countries, should be used to reduce risk of misclassification bias in studies of transition in nationally representative data.

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“…Long‐term goals of care generally focus on living as well as possible with the ventilator technology (Amin et al, 2017; McKim et al, 2011; Simonds, 2016). While there has been increasing study on the experiences of young adults living with HMV (Dale et al, 2020; Dreyer et al, 2010; van Huijzen & van Staa, 2013; Israelsson‐Skogsberg et al, 2018; Noyes et al, 2018), it is also imperative to attend to how contexts—social values, discourses, social structures, and social conditions—may constrain or open up possibilities for living well.…”

Section: Introductionmentioning

confidence: 99%

Transforming normative, ableist, and biomedical orientations to living well and quality of life in nursing: Reimagining what a ventilated body can do

et al. 2023

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A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and constrain opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18-40 years) living with HMV. Data were co-constructed virtually through an initial interview and photo-elicitation using participant-generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently.

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Conflicting realities experienced by children with life‐limiting and life‐threatening conditions when transitioning to adult health services

Cited by 12 publications

References 20 publications

‘Managing an unexpected life - a caregiver’s career’: Parents’ experience of caring for their child with a non-malignant life-limiting condition

‘Managing an unexpected life - a caregiver’s career’: Parents’ experience of caring for their child with a non-malignant life-limiting condition

Estimation of age of transition from children's to adult healthcare for young people with long term conditions using linked routinely collected healthcare data

Transforming normative, ableist, and biomedical orientations to living well and quality of life in nursing: Reimagining what a ventilated body can do

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