ArticleJournal of pediatric nursing
Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis.
Article in Journal of pediatric nursing. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.
What it found
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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.
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Who cites it
22 citing papers in PubMed, 43 citations in OpenAlex.
- A shared-management web-based intervention for sleep deficiency in school-age children with juvenile idiopathic arthritis and their parents: feasibility and acceptability study.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025Trial
- Development and Preliminary Evaluation of a Conversational Agent Delivering Problem-Solving Therapy for Family Caregivers of Children With a Chronic Health Condition: Multiphase Mixed Methods Study.Journal of medical Internet research · 2026Article
- Congruence Between Child Self-Reported and Caregiver-Proxy-Reported Health-Related Quality of Life in Children With Juvenile Idiopathic Arthritis and Systemic Lupus Erythematosus.The Journal of rheumatology · 2026Observational
- Children's experiences of a support program during their first year with juvenile idiopathic arthritis : - Insights from qualitative interviews.Pediatric rheumatology online journal · 2025Article
- A qualitative study exploring experiences of treatment in paediatric rheumatology - children's, young people's, parents' and carers' perspectives.Pediatric rheumatology online journal · 2025Article
- Experiences among parents caring for children with juvenile idiopathic arthritis at a tertiary referral hospital in Kenya.Frontiers in pediatrics · 2025Article
- Real-world psychosocial impact among patients with juvenile idiopathic arthritis and families in Spain.Pediatric rheumatology online journal · 2024Observational
- Benefits of a Juvenile Arthritis Support Program (JASP-1) for children recently diagnosed with Juvenile Idiopathic Arthritis and their parents.BMC rheumatology · 2024Article
- Caregiver burden in families of children with juvenile idiopathic arthritis in India.Clinical rheumatology · 2024Article
- Facing Pediatric Rheumatic Diseases: The Role of Disease Activity and Parental Emotion Regulation Strategy in Parents' and Children's Psychological Adjustment.Children (Basel, Switzerland) · 2023Article
- A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments.The Cochrane database of systematic reviews · 2023Review
- "I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis.Pediatric rheumatology online journal · 2023Article
- Does Diagnostic Certainty Matter?: Pain-Related Stigma in Adolescents with Juvenile Idiopathic Arthritis.Journal of pediatric psychology · 2023Article
- How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study.Disability and rehabilitation · 2022Article
- Comparing parental distress and children's difficulties between parents of children with rheumatic diseases and parents of healthy children in families facing the COVID-19 pandemic.Current psychology (New Brunswick, N.J.) · 2022Article
- A Mixed Method Study: Defining the Core Learning Needs of Nurses Delivering Care to Children and Young People with Rheumatic Disease to Inform Paediatric Musculoskeletal Matters, a Free Online Educational Resource.Children (Basel, Switzerland) · 2022Article
- The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear.International journal of environmental research and public health · 2021Article
- Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers.Pediatric rheumatology online journal · 2020Article
- Chinese family care patterns of childhood rheumatic diseases: A cluster analysis.International journal of nursing sciences · 2020Article
- Trying to Do What's Best: Maternal Perspectives About Toddler Sleep Health Among an Underresourced Sample of Mothers With Diverse Racial and Ethnic Identities.Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & PractitionersArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
purposeThe purpose of this study is to describe parents' experiences in caring for 2-5-year-old children with juvenile idiopathic arthritis (JIA). DESIGN AND
methodsA qualitative study using single-occasion in-depth interviews was conducted. Nine parents (eight mothers and one father) were interviewed in-person or via telephone. Data were analyzed using inductive content analysis. Methods used to protect the trustworthiness of study results included maintenance of an audit trail, peer debriefing, and member checks.
resultsThe core construct Struggling in the Dark to Help My Child explained parents' experience in six domains: not knowing, trying to reach out in the dark, feeling my child's pain, working out the kinks to stay on top to manage, feeling drained by the whole process, and being hard on the entire household. Parents struggled with the unknown, searched for resources, witnessed their child's suffering without knowing how to help, and tried every possible way to stay on top of the child's illness and treatment, even when they felt drained physically and emotionally. JIA not only consumed their lives, but also affected the entire family, including the siblings and spouse, and the relationships among family members. CONCLUSION AND IMPLICATIONS: Findings highlight the day-to-day lived challenges parents face when caring for a young child with JIA. Healthcare providers including nurses need to assess the particular needs of an ill child and parents as well as the impact of the illness on the physical and psychosocial health of the entire family so that proper resources can be provided.
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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.