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Caregivers' lived experience in trying to read slight movements in a child with severe brain injury: A
Naoko Kameda1, Machiko Suzuki2
1Setsunan University, Hirakata City, Osaka, Japan.
Insights
Caregivers interpret subtle movements in children with severe brain injuries by understanding the child's physical state and their own uncertainty. Sharing these interpretations among caregivers is crucial for accurate understanding.
Area of Science:
- Neuroscience
- Pediatric Care
- Qualitative Research
Background:
- Children with severe brain injuries exhibit complex motor characteristics and developmental variability, challenging individualized care.
- Caregivers often rely on experiential knowledge due to a lack of evidence on interpreting these subtle movements.
Observation:
- A qualitative hermeneutic phenomenological study utilized 21 observation sessions and 5 group interviews.
- Researchers observed a child with severe brain injury (AK) and 61 caregivers, interviewing 28 caregivers about their experiences.
Findings:
- Caregivers deciphered subtle movements by considering the child's physical state and their own uncertainty.
- Four emergent themes highlighted the process of interpreting subtle movements, with 'sharing' being essential.
Implications:
- Understanding caregivers' experiences in interpreting subtle movements can inform care strategies.
- The identified themes, particularly 'sharing,' offer a framework for assessing and guiding caregivers of children with severe brain injuries.
Aims And Objectives:
To explore caregivers' lived experience of reading slight movements of a child with severe brain injury.
Background:
Despite increased need, the development of individual care for children with severe brain injuries has been prevented by their severe physical state and the poor reproducibility of their movements. In addition to a lack of evidence on the motor characteristics of patients with severe brain injury with multiple disabilities, their own development contributes to increasing variability in their states. Thus, caregivers are compelled to rely on their experiences, which have not been academically explored.
Design:
A qualitative study based on van Manen's method of hermeneutic phenomenology.
Methods:
Data were obtained through twenty-one 3-hr observation sessions and five 15- to 45-min group interviews. We observed a child (called AK) with severe brain injury and his 61 caregivers, and conducted group interviews with 28 caregivers. We focused on caregivers' experiences of reading AK's slight movements. The data were interpreted based on van Manen's hermeneutic phenomenological approach.
Results:
Four themes emerged as caregivers' experience in trying to read AK's slight movements. By considering "AK's physical state and his slight movements" and discovering "caregivers' 'sense of uncertainty' about AK's slight movements," caregivers could decipher "AK's multiple slight movements." "Sharing" was found as a necessary aspect of these other three themes of reading AK's slight movements.
Conclusions:
We presented caregivers' experiences as related to these four themes in their efforts to read the slight movements of AK. Due to AK's slight movements with poor reproducibility, "sharing" was necessary to read AK's slight movements, as it exposes caregivers' lived experience to the interpretation of multiple caregivers.
Relevance To Clinical Practice:
These four themes may be useful for assessing, guiding and promoting caregivers' use of sharing when reading the slight movements of children with severe brain injury.
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