ArticleSpinal cord2018
It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI.
Article in Spinal cord, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 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
6 citing papers in PubMed, 11 citations in OpenAlex.
- The voice of caregivers of children and adolescents with spinal cord injuries: A scoping review.The journal of spinal cord medicine · 2024Article
- Lived experiences of caregivers and survivors of paediatric spinal cord injury: A scoping review of qualitative studies.The journal of spinal cord medicine · 2024Article
- Coping, Social Support, and Caregiver Well-Being With Families Living With SCI: A Mixed Methods Study.Topics in spinal cord injury rehabilitation · 2022Article
- Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey.International journal of nursing studies advances · 2021Article
- Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers.BMC health services research · 2021Article
- From Lost in the System to Empowered Parent-Researcher.Journal of patient experience · 2021Article
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 at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
STUDY
designFocus group study.
objectivesExplore unmet needs and support preferences of caregivers of youth with spinal cord injury (SCI).
settingOne pediatric specialty rehabilitation hospital system in the United States.
methodsFour focus groups were conducted with a convenience sample of 26 caregivers who were primarily mothers (96%) and married (65%), and had at least some college education (85%). Children living with SCI were on average 12.8 years old (SD = 3.3, 8-18). The average age of injury was 4.7 years (SD = 4.4, 0-16.2); mean injury duration was 8.2 years (SD = 3.9, 2-16); 77% had paraplegia; and 58% were male. Focus groups were digitally recorded, transcribed verbatim, and coded using thematic analysis and NVivo.
resultsQualitative data highlighted caregiver perspectives on unmet needs relating to two phases of care: acute and rehabilitation vs. current life with SCI, and two kinds of stressors: those associated with SCI and care vs. those related to other areas of the caregivers' lives, especially their families. Caregivers described stressful interactions with care systems and community services, articulated several concerns regarding well-being of family members, and noted that both they and their children with SCI experienced isolation. Caregivers articulated preferences for additional support from professionals and peers.
conclusionsData suggest the need for ongoing caregiver interventions and strengthened family-centered care systems, including professional assistance navigating health systems and peer support. Intervention development would benefit from further qualitative data collection with additional caregivers of youth with SCI, including multiple family members, and families from more diverse care settings.
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.