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The assessment of parent needs following paediatric traumatic brain injury
Kira Armstrong1, Kimberly A Kerns
1Pediatric Psychology/Neuropsychology Service, Advocate Lutheran General Hospital, Room Y2-108, 1675 Dempster St, Park Ridge, IL 60068-1174, USA.
Insights
Parents of children with traumatic brain injuries (TBI) report more unmet needs than parents of diabetic or orthopaedically injured children. Key unmet needs for TBI families include health information and professional support.
Area of Science:
- Neuroscience
- Pediatrics
- Psychology
Background:
- Traumatic brain injury (TBI) in children presents unique challenges for families.
- Parental needs and support are crucial for successful pediatric TBI rehabilitation.
- Existing research often overlooks the specific, long-term needs of parents caring for children with TBI.
Purpose of the Study:
- To compare the unmet needs of parents of children with TBI to those of parents with children in control groups (diabetes and orthopedic injury).
- To identify specific areas where parents of children with TBI experience unmet needs.
- To inform TBI rehabilitation professionals about critical support gaps.
Main Methods:
- The pediatric version of the Family Needs Questionnaire was used.
- Parents of children with TBI (1+ year post-injury), diabetes (DIAB), and orthopedic injuries (ORTHO) participated.
- Participants rated the importance of needs and whether they were met.
Main Results:
- Parents of children with TBI reported significantly more unmet needs compared to DIAB and ORTHO groups.
- Out of 28 important needs, TBI parents identified 19 as unmet.
- Key unmet needs for TBI parents included health information, professional support, community networks, and involvement in care.
Conclusions:
- Parents of children with TBI face substantial unmet needs, particularly regarding information and support.
- Rehabilitation professionals must address these specific needs to improve family outcomes.
- Further research should explore resource availability and suitability for TBI families.
Abstract:
The paediatric version of the Family Needs Questionnaire was administered to parents of children with traumatic brain injuries (TBI) a year or more post-injury. Parents of diabetic children (DIAB) and parents of orthopaedically (ORTHO) injured children were included as control groups. Parents rated items on their importance and how well these needs have been met. The ORTHO group rated significantly fewer items as important relative to the TBI and DIAB groups (who endorsed a similar number of items). Of those items rated as important, TBI parents' needs were more likely to remain unmet relative to both the DIAB and the ORTHO groups: out of 28 items rated as important, TBI parents report that 19 needs are still unmet. DIAB and ORTHO parents more consistently reported their needs as met. Needs most often rated as unmet for TBI parents include the needs for health/medical information, professional support, community support networks, and the need to be involved in their child's care. These results present important findings for TBI rehabilitation professionals. Future studies need to investigate whether TBI parents' needs are unmet because of the lack of community resources, or if available resources do not adequately target the needs of the TBI parents.