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The Private Worlds of Dying Children

Myra Bluebond-Langner

1, 2020

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Longitudinal investigation of prognostic communication: Feasibility and acceptability of studying serial disease reevaluation conversations in children with high‐risk cancer

Cancer, 2020-01, Vol.126 (1), p.131-139

2020

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Attending to child agency in paediatric palliative care consultations: Adults’ use of tag questions directed to the child

Sociology of health & illness, 2022-03, Vol.44 (3), p.566-585

2022

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Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents

American journal of medical genetics. Part A, 2019-06, Vol.179 (6), p.903-907

2019

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The impact of prenatal counselling on mothers of surviving children with hypoplastic left heart syndrome: A qualitative interview study

Health expectations : an international journal of public participation in health care and health policy, 2020-10, Vol.23 (5), p.1224-1230

2020

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Keeping all options open: Parents’ approaches to advance care planning

Health expectations : an international journal of public participation in health care and health policy, 2017-08, Vol.20 (4), p.675-684

2017

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Undertaking doctoral research with children and young people with life‐limiting or life‐threatening conditions

Journal of advanced nursing, 2019-12, Vol.75 (12), p.3183-3185

2019

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Parents’ responses to prognostic disclosure at diagnosis of a child with a high‐risk brain tumor: Analysis of clinician‐parent interactions and implications for clinical practice

Pediatric blood & cancer, 2021-03, Vol.68 (3), p.e28802-n/a

2021

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In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child

Myra Bluebond-Langner

2020

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The Private Worlds of Dying Children

Myra Bluebond-Langner

2020

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Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

Qualitative health research, 2019-01, Vol.29 (1), p.55-68

2019

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Studying Children’s Experiences in Interactions With Clinicians: Identifying Methods Fit for Purpose

Qualitative health research, 2019-02, Vol.29 (3), p.393-403

2019

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Home or hospital as the place of end-of-life care and death: A grounded theory study of parents’ decision-making

Palliative medicine, 2021-01, Vol.35 (1), p.219-230

2021

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‘My life is a mess but I cope’: An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition

Palliative medicine, 2024-03, Vol.38 (3), p.379-388

2024

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Palliative care for children and young people with stage 5 chronic kidney disease

Pediatric nephrology (Berlin, West), 2022-01, Vol.37 (1), p.105-112

2022

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Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study

Palliative medicine, 2020-03, Vol.34 (3), p.300-308

2020

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The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care

BMC palliative care, 2023-12, Vol.22 (1), p.203-203, Article 203

2023

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What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

Palliative medicine, 2024-04, Vol.38 (4), p.471-484

2024

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“We just follow the patients’ lead”: Healthcare professional perspectives on the involvement of teenagers with cancer in decision making

Pediatric blood & cancer, 2018-03, Vol.65 (3), p.n/a

2018

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Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children’s research involvement group and expert item generation

Palliative medicine, 2023-12, Vol.37 (10), p.1509-1519

2023

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Regret and unfinished business in parents bereaved by cancer: A mixed methods study

Palliative medicine, 2020-03, Vol.34 (3), p.367-377

2020

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Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study

Palliative medicine, 2023-06, Vol.37 (6), p.856-865

2023

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Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes

Palliative medicine, 2020-03, Vol.34 (3), p.358-366

2020

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Promoting high quality research with life‐limited children and their families: Establishment of a joint research group between Together for Short Lives and the Association for Paediatric Palliative Medicine

Journal of advanced nursing, 2017-02, Vol.73 (2), p.283-285

2017

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Understanding Parents’ Approaches to Care and Treatment of Children With Cancer When Standard Therapy Has Failed

Journal of clinical oncology, 2007-06, Vol.25 (17), p.2414-2419

2007

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The Private Worlds of Dying Children

Longitudinal investigation of prognostic communication: Feasibility and acceptability of studying serial disease reevaluation conversations in children with high‐risk cancer

Attending to child agency in paediatric palliative care consultations: Adults’ use of tag questions directed to the child

Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents

The impact of prenatal counselling on mothers of surviving children with hypoplastic left heart syndrome: A qualitative interview study

Keeping all options open: Parents’ approaches to advance care planning

Undertaking doctoral research with children and young people with life‐limiting or life‐threatening conditions

Parents’ responses to prognostic disclosure at diagnosis of a child with a high‐risk brain tumor: Analysis of clinician‐parent interactions and implications for clinical practice

In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child

The Private Worlds of Dying Children

Children’s and Parents’ Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

Studying Children’s Experiences in Interactions With Clinicians: Identifying Methods Fit for Purpose

Home or hospital as the place of end-of-life care and death: A grounded theory study of parents’ decision-making

‘My life is a mess but I cope’: An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition

Palliative care for children and young people with stage 5 chronic kidney disease

Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study

The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

“We just follow the patients’ lead”: Healthcare professional perspectives on the involvement of teenagers with cancer in decision making

Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children’s research involvement group and expert item generation

Regret and unfinished business in parents bereaved by cancer: A mixed methods study

Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study

Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes

Promoting high quality research with life‐limited children and their families: Establishment of a joint research group between Together for Short Lives and the Association for Paediatric Palliative Medicine

Understanding Parents’ Approaches to Care and Treatment of Children With Cancer When Standard Therapy Has Failed

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