It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI

• Published in: Spinal cord 2018-03, Vol.56 (3), p.284-294
• Main Authors: Ryerson Espino, Susan L., Kelly, Erin H., Rivelli, Anne, Zebracki, Kathy, Vogel, Lawrence C.
• Format: Article
• Language: English
• Subjects: 631/477; 692/700/1720; Adolescent; Adult; Anatomy; Attitude to Health; Biomedical and Life Sciences; Biomedicine; Caregivers; Caregivers - psychology; Child; Children; Data collection; Disease Management; Families & family life; Female; Focus groups; Focus Groups - methods; Health Services Needs and Demand; Human Physiology; Humans; Injuries; Male; Middle Aged; Neurochemistry; Neuropsychology; Neurosciences; Paraplegia; Qualitative analysis; Rehabilitation; Spinal cord injuries; Spinal Cord Injuries - epidemiology; Spinal Cord Injuries - physiopathology; Spinal Cord Injuries - rehabilitation; United States; Well being; Youth
• ISSN: 1362-4393; 1476-5624
• DOI: 10.1038/s41393-017-0022-6

Study design Focus group study. Objectives Explore unmet needs and support preferences of caregivers of youth with spinal cord injury (SCI). Setting One pediatric specialty rehabilitation hospital system in the United States. Methods Four 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. Results Qualitative 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. Conclusions Data 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.