ArticleJournal of pain and symptom management2021
Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making.
Article in Journal of pain and symptom management, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Parents' experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis.Palliative medicine · 2024Pooled it
- Life-Sustaining Treatment Decisions and Parent Caregiving Experiences for Children With Medical Complexity.JAMA network open · 2026Article
- "What's in It for the Kid?": An Approach for the Bedside Ethicist.Children (Basel, Switzerland) · 2026Article
- Identification of a different DNA methylation pattern for pain related genes in children with intellectual disability: a cross-sectional study.Italian journal of pediatrics · 2026Article
- Parental experiences transitioning neurological impaired young adults to adult services.Health care transitions · 2026Article
- Pain Measurement in Infants and Children With and at Risk for Intellectual Disabilities.Paediatric & neonatal pain · 2025Review
- Evidence for Impact: Evaluating Core Treatment Goals in Pediatric Palliative Inpatient Care.Children (Basel, Switzerland) · 2025Article
- "The American journal of hospice & palliative care · 2025Article
- A Mediation Analysis of Trauma Symptoms on the Well-Being in Caregivers of Children with Medical Complexity.Healthcare (Basel, Switzerland) · 2025Article
- Children With Severe Neurologic Impairment and Their Families in the PICU: A Secondary Qualitative Analysis to Assess Clinician-Family Collaboration and Mutuality.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2025Article
- Coping and Meaning-Making Strategies Described by Parents of Children with Medical Complexity.Clinical practice in pediatric psychology · 2025Article
- Improving Access to Technology-Driven Critical Care Interventions in Children With Severe Neurological Impairment.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2025Article
- A Photo-Narrative Intervention for Children With Severe Neurological Impairment in the PICU.Journal of pain and symptom management · 2025Article
- A photo-narrative intervention protocol for clinicians and parents of children with severe neurological impairment in the PICU.Contemporary clinical trials communications · 2025Article
- "I'm completely off base here on what this child is capable of": A qualitative analysis of how medical ableism manifests in PICU clinicians' care of children with severe neurological impairment.Disability and health journal · 2025Article
- "Death Is Not a Dirty Word:" A Qualitative Study of Emergency Clinician End-of-Life Communication.Pediatrics · 2024Article
- Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit.Journal of palliative medicine · 2024Article
- It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study.BMC palliative care · 2024Article
- Acute and Persistent Postoperative Functional Decline in Children with Severe Neurological Impairment: A Qualitative, Exploratory Study.Children (Basel, Switzerland) · 2024Article
- Trust of inpatient physicians among parents of children with medical complexity: a qualitative study.Frontiers in pediatrics · 2024Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
contextParents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology and/or surgery, goals of care and/or advance care planning, or transitions of care.
objectivesThis study describes the experiences of parents of children with SNI during decision-making.
methodsEligible participants were parents facing a decision for a child with SNI admitted to acute or intensive care units at a single tertiary pediatric center. Parents completed 1:1 semi-structured interviews and brief surveys between August 2019 and February 2020. Demographic information was extracted from the child's electronic health record. A team of palliative and complex care researchers with expertise in qualitative methods used thematic content analysis to formulate results.
results25 parents participated. The majority had children with congenital/chromosomal SNI conditions (n = 13, 65%), >5 subspecialists (n = 14, 61%), and chronic technology assistance (n = 25, 100%). 68% (n = 17) were mothers and 100% identified as being their child's primary decision-maker. Responses from parents included 3 major themes: 1) our roles and actions; 2) our stresses and challenges; and 3) our meaning and purpose. Responses highlighted the pervasiveness of parental decision-making efforts and parents' advocacy and vigilance regarding their child's needs. Despite this, parents often felt unheard and undervalued in the hospital.
conclusionDuring hospitalizations, when parents of children with SNI often face high-stakes medical decisions, interventions are needed to support parents and ensure they feel heard and valued as they navigate their child's medical needs and system challenges.
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Registered trials
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