Shifting and intersecting needs: Parents’ experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit

Broden, Elizabeth G.; Werner‐Lin, Allison; Curley, Martha A. Q.; Hinds, Rebecca

doi:10.1016/j.iccn.2022.103216

Cited by 8 publications

(23 citation statements)

References 44 publications

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“…Qualitatively, parents retrospectively defined categories of needs for their child and themselves as they navigated the EOL and grief experience. Parents' primary need was “to be together” with their dying child, 18 which often intersected with other competing needs, including the child's clinical care. The category “To make sense of evolving clinical care” involved parents' need to understand their child's clinical signs and symptoms throughout the clinical course leading up to EOL.…”

Section: Resultsmentioning

confidence: 99%

“…The model guided quantitative variable selection and qualitative interview question development and supplied an analytic framework for data integration. Details of the quantitative and qualitative studies are published elsewhere 17,18 …”

Section: Methodsmentioning

confidence: 99%

“…Parents retrospectively described EOL needs, for their child and themselves, during and after the withdrawal of LST 18 . Parents of children who died after withdrawal of LST (n = 111) who consented for RESTORE follow-up were eligible to participate in a phone interview.…”

Section: Methodsmentioning

confidence: 99%

“…Parents retrospectively described EOL needs, for their child and themselves, during and after the withdrawal of LST. 18 Parents of children who died after withdrawal of LST (n = 111) who consented for RESTORE follow-up were eligible to participate in a phone interview. Parents were not contacted if they did not speak English (n = 13), the child was transferred from the PICU before death (n = 2), they did not consent to follow-up (n = 6), contact information was unavailable (n = 21), or the RESTORE site was unable to help with recruitment (n = 29).…”

Section: Sampling Strategy and Data Collectionmentioning

confidence: 99%

See 3 more Smart Citations

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Broden¹,

Hinds²,

Werner‐Lin³

et al. 2022

J Hosp Palliat Nurs

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Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Sampling Strategy and Data Collectionmentioning

confidence: 99%

See 2 more Smart Citations

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Broden¹,

Hinds²,

Werner‐Lin³

et al. 2022

J Hosp Palliat Nurs

Self Cite

View full text Add to dashboard Cite

show abstract

“…Policies that relegate close loved ones to “visitor” status can prevent existential connections 37. Medical equipment may literally obstruct physical touch, tarnishing family members' important memories of the person in their final moments 38…”

Section: Elements Of Existential Carementioning

confidence: 99%

Existential Care in Daily Nursing Practice

Tarbi,

Broden,

Rosa

et al. 2023

AJN, American Journal of Nursing

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Relationship-centered palliative nursing during serious illness requires existential care. Yet, multilevel systemic barriers hinder nurses' ability to provide this care. The authors suggest ways to navigate these barriers, highlighting existential care priorities that nurses can attend to in their daily practice. These include 1) maintaining a strengths-based orientation, 2) taking a life course perspective, 3) grounding care firmly in relationships, and 4) responding moment to moment. They propose that by emphasizing existential care in palliative nursing, we can create a more compassionate and human-centered health system.

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Moving on from a “good death”: Child- and family-centred end-of-life care in paediatric critical care

Butler,

Bloomer

2025

Intensive and Critical Care Nursing

View full text Add to dashboard Cite

Shifting and intersecting needs: Parents’ experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit

Cited by 8 publications

References 44 publications

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

“I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either”

Existential Care in Daily Nursing Practice

Moving on from a “good death”: Child- and family-centred end-of-life care in paediatric critical care

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