The dying child: how is care different?

Hynson, Jenny; Gillis, Jonathon; Collins, John J.; Irving, Helen; Trethewie, Susan

doi:10.5694/j.1326-5377.2003.tb05571.x

Cited by 57 publications

(55 citation statements)

References 10 publications

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“…In agreement with the findings in this study, the normality of family life and relationships, as well as the prevention of isolation, are mentioned [28-30]. At the same time the results in this study substantiate the observation that care at home has its limits and in certain situations is not desirable or possible [29].…”

Section: Discussionsupporting

confidence: 92%

“…At the same time the results in this study substantiate the observation that care at home has its limits and in certain situations is not desirable or possible [29]. Parents are confronted with a high medical and nursing responsibility [30,31]. Some families feel more secure in the familiar environment of a hospital ward [30].…”

Section: Discussionsupporting

confidence: 77%

“…Parents are confronted with a high medical and nursing responsibility [30,31]. Some families feel more secure in the familiar environment of a hospital ward [30]. In every single case the preferred place of care - and after all, also the place of death - should be discussed openly in terms of informed consent [23].…”

Section: Discussionmentioning

confidence: 99%

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Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

et al. 2010

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BackgroundIn North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored.MethodsSemi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis.ResultsFour main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective.ConclusionsPredominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionsupporting

confidence: 77%

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Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

et al. 2010

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“…Unlike the case in adult medicine, children with cancer comprise less than one third of the referrals to paediatric palliative care. Most referrals are from physicians caring for children with neurodegenerative conditions, metabolic defects, rare genetic conditions, congenital anomalies or catastrophic illnesses 2–4…”

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confidence: 99%

A paediatric palliative care programme in development: trends in referral and location of death

Vadeboncoeur

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Rattray

et al. 2009

Archives of Disease in Childhood

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“…In the United States (U.S.) about 500,000 children are coping with life-threatening conditions (LTC) every year (Himelstein et al 2004; Hoyert et al 2006; Hynson et al 2003). The U.S. Institute of Medicine (IOM) defines children with LTC as those who 1) carry a substantial probability of death in childhood, although treatment may succeed in curing the condition or substantially prolonging life, and 2) are perceived as potentially having fatal outcomes (Field et al 2003).…”

Section: Introductionmentioning

confidence: 99%

Quality of Life Measurement for Children with Life-Threatening Conditions: Limitations and a New Framework

et al. 2010

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About 500,000 children are coping with life-threatening conditions (LTC) in the United States every year. Different service programs such as an integrated pediatric palliative care program may benefit health-related quality of life (HRQOL) which is a great concern of this children population and their families. However, evidence is limited about the appropriate HRQOL instruments for use. This study aims to validate psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life (PedsQL) 4.0, for children with LTC. The parent proxy-report was used. We conducted a telephone interview to collect data of 257 parents whose children had LTC and were enrolled in Medicaid. We used standard psychometric methods to validate the PedsQL: scale reliability, item-domain convergent/discriminant validity, and known-groups validity. We also conducted Rasch analysis to assess construct validity. Results suggest that the PedsQL did not demonstrate valid psychometric properties for measuring HRQOL in this population. Rasch analysis suggests that the contents of the items in all domains did not appropriately cover the latent HRQOL of children with LTC. We document several methodological challenges in using a generic instrument to measuring HRQOL and propose a new framework to improve HRQOL measures for children with LTC. The strategies include revising the content of existing items, designing new items, adding important themes (e.g., financial challenge), and applying computerized adaptive test to better select appropriate items for individual children with LTC.

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The dying child: how is care different?

Abstract: ■ Of children needing palliative care, less than half have a malignancy.■ Most families will elect to care for their child at home if this is offered as a realistic option.Jenny L Hynson, MB BS, FRACP, Paediatrician.

Cited by 57 publications

References 10 publications

Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

A paediatric palliative care programme in development: trends in referral and location of death

Quality of Life Measurement for Children with Life-Threatening Conditions: Limitations and a New Framework

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