ArticleFrontiers in pediatrics2022
"You Never Exhale Fully Because You're Not Sure What's NEXT": Parents' Experiences of Stress Caring for Children With Chronic Conditions.
Article in Frontiers in pediatrics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
24 citing papers in PubMed.
- Closing the Feedback Loop: Improving Communication of Findings With Aboriginal Research Participants Through Participatory Action Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Psychological distress and caregiver burden among caregivers of children with chronic liver disease: A cross-sectional study.BMC pediatrics · 2026Article
- Development and validation of a parent-proxy bronchiectasis child quality-of-life instrument: the BC-QoL.ERJ open research · 2026Article
- "Rolling the Boulder Up the Hill": A Qualitative Study of Parents' Experiences Providing Ongoing Care at Home for Their Child with Complex Medical Needs.The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres · 2026Article
- Unseen struggles: a narrative review of psychosocial and family outcomes following pediatric stroke.Frontiers in psychology · 2026Review
- Long-term use of an assistive exercise product in young people with cerebral palsy who are non-ambulant is a balancing act-a phenomenographic study.Frontiers in rehabilitation sciences · 2026Article
- Psychosocial impact of pediatric long COVID: a dyadic analysis of persistent symptoms, sleep, and self-esteem in parents and children.Frontiers in psychology · 2026Article
- The assessment of continuity of care and care coordination for Children and Youth with Special Health Care Needs (CYSHCN): a cross-sectional descriptive study in Northeastern Italy.Italian journal of pediatrics · 2025Article
- Parents of Children and Young People With Long-Term Physical Health Conditions-Experiences of Navigating School.Child: care, health and development · 2025Article
- Article
- Care needs of children with chronic illnesses from the perspectives of children, parents, and nurses: a Q methodology approach.BMC nursing · 2025Article
- Breaking the cycle: Psychological and social dimensions of pediatric functional gastrointestinal disorders.World journal of clinical pediatrics · 2025Article
- Navigating diagnostic uncertainty in children's chronic lower limb pain: A qualitative study of management strategies using vignette-based focus groups.Journal of foot and ankle research · 2025Article
- Promoting Health Equity for Children With Special Health Care Needs and Child Welfare Involvement.Hospital pediatrics · 2025Article
- Prevalence of anxiety and associated factors among guardians of children admitted with severe malaria at Thyolo District Hospital in Malawi.The South African journal of psychiatry : SAJP : the journal of the Society of Psychiatrists of South Africa · 2025Article
- Article
- Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis.European journal of pediatrics · 2024Article
- A Prospective Study of the Family Quality of Life, Illness Perceptions, and Coping in Mothers of Children Newly Diagnosed with Autism Spectrum Disorder and Communication Difficulties.European journal of investigation in health, psychology and education · 2024Article
- Psychological Distress Among Parents of Children With Chronic Health Conditions and Its Association With Unmet Supportive Care Needs and Children's Quality of Life.Journal of pediatric psychology · 2024Article
- Unmet supportive care needs in families of children with chronic health conditions: an Australian cross-sectional study.World journal of pediatrics : WJP · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Children with chronic conditions are experiencing improved survival worldwide, and it is well-known that their parents are stressed. Yet, despite this knowledge, parents continue to experience stress. Our study explored the lived experience of parental stress when caring for children with various chronic conditions to identify opportunities to potentially reduce stress for these parents. This was an exploratory qualitative study using semi-structured interviews. To ensure appropriate research priorities were addressed, the study was co-designed with consumer and stakeholder involvement. Twenty parents were interviewed. Parents were recruited through a recognized family support organization for children with various care needs in Western Australia. Interviews were audio-recorded, transcribed verbatim, anonymized, and analyzed using Interpretative Phenomenological Analysis. Two superordinate themes were identified: (1) Gut instinct to tipping point included parents as unheard experts and their experiences of stress and becoming overwhelmed. (2) Losses and gains covered the parents' identity and relationship challenges and coping strategies with their children's unpredictable conditions. Parents' experiences of stress caring for children with chronic conditions can be applied to the Job-Demand Control-Support Model for occupational stress. Not only does this application provide a useful framework for practitioners but it adds a unique perspective that reflects the dual role of parents in caring for their children with chronic conditions as a parent but also a professional with a 24/7 workload. The parents' experiences highlight a need for improved support access, effective communication between parents and health care professionals, discharge preparation and information provision, and regular screening of parental stress with a referral pathway.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.