Validity and reliability of the Turkish version of the hand-use-at-home questionnaire for children with unilateral cerebral palsy and neonatal brachial plexus palsy.

PURPOSE: To translate the Hand-Use-at-Home questionnaire (HUH), assesses the amount of spontaneous use of the affected hand in children with 18 bimanual activities, into Turkish and examine its validity and reliability on children with neonatal brachial plexus palsy (NBPP) or unilateral cerebral palsy (UCP). MATERIALS AND METHODS: The HUH was translated and cross-culturally adapted to Turkish and administered to children with NBPP (n = 25) and UCP (n = 42) between 3 and 10 years. The psychometric analyses included reliability by internal consistency (Cronbach's alpha) and test/retest reliability (intraclass correlation coefficient, ICC) structural validity was evaluated with exploratory factor analysis, and construct validity was investigated by matching the HUH with the Pediatric Outcome Data Collection Instrument Upper Extremity Scale (PODCI) (NBPP only), and Children's Hand-Use Experience Questionnaire (CHEQ) (UCP only). RESULTS: HUH showed excellent test-retest reliability (ICC2,1 = 0.988 Cl (0.977-0.992)), excellent internal consistency (Cronbach's-α = 0.989), and moderate correlation with CHEQ (rs = 0.558) in UCP and high correlation with PODCI Scale (rs = 0.789) in NBPP group. The HUH had low and moderate correlation respectively lesion-extent levels (r=-0.457) in NBPP and 5 Manual Ability Classification System levels (r=-0.688) in the UCP group. CONCLUSION: The HUH is a valid and reliable tool to assess the amount of spontaneous use of the affected hand in Turkish children with NBPP and UCP.

The Hand-Use-at-Home (HUH) questionnaire is a reliable and good valid outcome measure to evaluate the amount of spontaneous use of the affected hand.We suggest the Turkish version of the HUH be used in the Turkish children to indicate small changes in the severity of disorder of children until a normal quality of life is achieved.The HUH can be used with high reliability and validity by experienced and inexperienced doctors and physiotherapists.

Pros and cons of botulinum toxin injection therapy in cerebral palsy: A qualitative study exploring caregivers' perspective.

BACKGROUND: To describe and understand the experiences and beliefs of caregivers of children with cerebral palsy following botulinum toxin injection. METHODS: A descriptive case study approach with focus group interviews was employed. A semi-structured questionnaire was conducted to collect data. Twenty-one caregivers of children (3-13 years old) with cerebral palsy were recruited with a maximum variation sampling strategy to gain insight through different perspectives. Qualitative analysis with verbatim transcripts was analysed using a thematic approach. FINDINGS: Four themes emerged from qualitative analyses: acceptance of diagnosis, perceptions about treatment, caregivers' experiences with the health environment, and feelings and thoughts after the treatment. CONCLUSIONS: This study highlights caregivers' requests for information about the possible long-term effect of botulinum toxin, as well as information and support to provide the best rehabilitation programme immediately after injection.

The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs.

AIM: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. MATERIALS AND METHODS: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected. The childrens' parents completed the Family Needs Survey and the Zarit Caregiver Burden Scale. RESULTS: According to the results of the Family Needs Survey, it was found that information was the most common requirement, and this was independent of the level of education. According to the Caregiver Burden Scale, it was recorded that 64.7% of the caregivers were under mild/moderate burden. While there was a moderate correlation (r = 0.574; P < .001) between the Caregiver Burden Scale and the Family Needs Survey, it was observed that the functional level of the child was not associated with family needs and caregiver burden. CONCLUSIONS: Our study suggests that the needs of families of SMA patients, especially related to income level, have changed. The caregivers' burden is not directly related to the income level or the functional level of the child. Families' need for information should also be prioritized within the rehabilitation program.