A recent article utilised a mixed method approach to investigate the experiences of parents of children with CP using standing devices in a home setting.
You can find the full article in the journal “Child: Care, Health and Development”: How best to support parents in the management of standing frame usage in home settings: A mixed methods study.
However, to give you a brief overview of the study, here is an article summary:
Background
Cerebral palsy (CP) is a group of permanent, non-progressive disorders affecting movement and posture due to brain abnormalities during development. It is the most common cause of physical disability in childhood, with a prevalence of 1.6 per 1000 live births in high-income countries. Tools like the Gross Motor Function Measure (GMFM) and the Gross Motor Function Classification System (GMFCS) assess motor function and predict development.
For children with CP who are non-ambulant or minimally ambulatory (GMFCS levels III–V), postural management programmes, including equipment provision, are recommended to optimise physical function and mitigate secondary musculoskeletal conditions. Standing frames support the child in an upright position, providing weight bearing through the lower extremities, which can improve bone and joint health, cardiovascular and respiratory systems, digestive and urinary functions, neuromusculoskeletal functions, pain, mobility, and cognitive functions. They also facilitate interaction with peers.
Standing frames are used in various settings, including homes, nurseries, schools, clinics, and hospitals. However, their use at home can be challenging for parents due to positioning difficulties and the child’s discomfort. Limited evidence exists on home use, prompting further research to support parents in managing standing frames effectively.
Aim of the study
The researchers aimed to understand how parents of children with CP perceived and manage standing frame use at home with their children.
Methods
The study was conducted with a mixed method. In the first phase a quantitative questionnaire was distributed and in the second phase qualitative interviews were conducted.
Results
A total of 103 parents of children with CP answered the questionnaire. They were living in Denmark (39), Norway (25), Great Britain (24) and in Canada and the US (15).
15 parents from 12 families in Denmark agreed in addition to be interviewed.
Characteristics
The children were categorized by age groups: 0-5 years (30%), 6-11 years (38%), and 12-17 years (32%). Most children were classified at GMFCS level V (48%), indicating severe mobility limitations. Additionally, 80% of the children had a standing frame for use at home.
Indications for Use
Quantitative Results:
- Parents reported weight bearing (80%), bone strength (65%), and reducing the risk of hip dislocation (64%) as the main reasons for using a standing frame.
- Reasoning differences across countries:
- Danish parents: 100% reported weight bearing
- Norwegian parents: 80% reported weight bearing
- British parents: 62.5% reported reducing joint contracture and hips dislocation
- Canadian and American parents: 80% reported bone strength
Qualitative Findings:
1. Prevention of Secondary Musculoskeletal Conditions:a. Standing frames help maintain and optimise body structure and function.
b. Benefits include reducing the risk of hip dislocation, joint contractures, and improving respiratory, bladder, and bowel functions.
c. Weight bearing is crucial for physical development and preventing fractures.
2. Independence:
a. Standing frames enable children to stand independently, increasing their function, attention, and concentration.
b. They improve peer interaction by allowing children to be at eye level with peers.
c. Long-term hopes include using walkers for independent mobility.
Confidence
Quantitative Results:
- 80% of parents had a child with a standing frame at home, and 89% felt confident using it.
Qualitative Findings:
- Confidence depended on access to professional expertise for proper adjustment and fitting.
- Parents felt more confident with professional support but still faced challenges in ensuring correct positioning.
Knowledge and Guidance for Use
Quantitative Results:
- 86% of parents received guidance on using the standing frame, and 82% felt they had sufficient knowledge.
- Guidance topics included daily adjustments, positioning, evaluating weight-bearing, and managing side effects.
Qualitative Findings:
- Professional knowledge was crucial for parents to feel confident in managing the standing frame.
- Ongoing professional support was needed as children’s needs changed over time.
- Written or video materials were suggested to help parents manage the standing frame independently.
Conclusion
This mixed methods study examines how to help parents manage standing frame use at home, impacting adherence to prescribed programmes. Parents see standing frames as vital for their child’s body structure and independence, with weight bearing being crucial. Their confidence relies on professional expertise, though they often feel unsure about positioning. Thus, ongoing professional support for adjustments is needed. The study recommends combining close professional support with educational materials and providing detailed information from healthcare professionals about the benefits and expectations of standing frames.
