Caregiver knowledge and preferences for gross motor function information in cerebral palsy.

AIM: To determine caregiver knowledge and preferences for gross motor information and examine differences across Gross Motor Function Classification System (GMFCS) levels. METHOD: A questionnaire was developed. Respondents reported GMFCS knowledge, preference for knowledge, and experience with GMFCS and motor curve information. RESULTS: In total, 303 caregivers of children with cerebral palsy (CP) (GMFCS level I: 22%; GMFCS level II: 16%; GMFCS level III: 15%; GMFCS level IV: 23%; GMFCS level V: 24%) completed the questionnaire. Forty-five per cent of caregivers knew the GMFCS level at survey, and only 31% knew how their child's motor development compared with others of similar age and level. Caregiver education level was associated with knowledge (p<0.001). Most prefer discussing motor development with a therapist. Of caregivers who knew their child's GMFCS level at survey, 83% reported it would be helpful to revisit the topic over time. Compared with GMFCS level IV and V, caregivers of children in GMFCS levels I to III preferred to learn at the same time as CP diagnosis, (p=0.04) and were more likely to report having received visual aids (p=0.04). Caregivers of children in GMFCS levels IV and V found it more difficult to learn their child's level (p<0.001) versus those caring for children of GMFCS levels I to III, and reported seeing pictures with descriptions more informative (p=0.03). INTERPRETATION: Caregivers of children with CP may not know GMFCS and motor curve information, and vary in experience and preferences for this information. WHAT THIS PAPER ADDS: Fewer than half of caregivers of children with cerebral palsy (CP) know their child's Gross Motor Function Classification System level. Most want to know how their child's function compares to other children with CP. The majority of caregivers would like to revisit the topic over time. Caregivers want to discuss gross motor information with the therapist and doctor.

Inspiring hope through sources of strength among predominantly Pacific Islander communities.

Suicide death rates for Indigenous Hawaiians and other Pacific Islanders are amongst the highest in the world for youth, taking a tremendous toll on local communities (Else et al., 2007; Goebert, 2014). Comprehension of community perspectives of suicide and well-being can enhance suicide prevention interventions. This community-initiated project aimed to culturally adapt the components of an evidence-based youth suicide prevention intervention and refine the intervention methodology to align with these adaptations. Formative qualitative work was conducted with community members to obtain information on community strengths and program fit. Narrative analyses were emergent and emphasized components for suicide prevention, incorporating cultural auditing to ensure information reflected group views. Participants highlighted cultural aspects pertaining to the program philosophy, the importance of cultural protocol, local innovation in suicide prevention, and culturally grounded advancements that give back to their community. This insight was applied to two adjacent but distinct communities to integrate suicide prevention in a sustainable way by culturally adapting the program. Effective suicide prevention for rural and Indigenous youth requires a broad-based community commitment, connection, and network.