The efficacy of appropriate paper-based technology for Kenyan children with cerebral palsy

Abstract

Purpose

Appropriate paper-based technology (APT) is used to provide postural support for children with cerebral palsy (CP) in low-resourced settings. This pilot study aimed to evaluate the impact of APT on the children’s and families’ lives.

Materials and methods

A convenience sample of children with CP and their families participated. Inclusion was based on the Gross Motor Function Classification System levels IV and V. APT seating or standing frames were provided for six months. A mixed methods impact of APT devices on the children and families included the Family Impact Assistive Technology Scale for Adaptive Seating (FIATS-AS); the Child Engagement in Daily Life (CEDL) questionnaire; and a qualitative assessment from diary/log and semi-structured interviews.

Results

Ten children (median 3 years, range 9 months to 7 years). Baseline to follow-up median (IQR) FIATS-AS were: 22.7 (9.3) and 30.3 (10.2), respectively (p=.002). Similarly mean (SD) CEDL scores for “frequency” changed from 30.5 (13.2) to 42.08 (5.96) (p=.021) and children’s enjoyment scores from 2.23 (0.93) to 2.91 (0.79) (p=.019). CEDL questionnaire for self-care was not discriminatory; seven families scored zero at both baseline and 6 months. Qualitative interviews revealed three key findings; that APT improved functional ability, involvement/interaction in daily-life situations, and a reduced family burden of care.

Conclusions

APT devices used in Kenyan children with non-ambulant CP had a meaningful positive effect on both the children’s and their families’ lives.

Implications for rehabilitation

• Assistive devices are often unobtainable for children with cerebral palsy (CP) in low-income countries.

• APT is a low cost and sustainable solution to make seating and standing devices for disabled children in Kenya.

• The regular use of a postural support device enhanced the children’s motor skills, ability to function and participate in everyday activities, reduced the burden of care for the families and promoted the children’s social interaction.

• The postural support devices were highly valued and utilised by the children and families in this study.

Keywords:

• Cerebral palsy
• resource-limited country
• paper technology
• adaptive seating
• standing frames
• assistive devices

Acknowledgements

The authors extend their gratitude to all the families who participated in this study. The research assistants: Timothy Kiragu, David Chege, Ceri Bracegirdle, Stephanie Benbow, Diane Lyle, Heather Angilley, Maureen Harms and Hilton Cowie. The research development group members: Racheal Wanjagua, Hilary Kanaris, Paul Lindoewood, Dr Cecelia Nyaga and Marian Velthuijs. Patrick Ndahi for translation of questionnaires. St Martin Catholic Apostolate disability programme, particularly its director, Daniel Mutahi, for providing staff, space, L’Arche Kenya workshop and logistics, including sourcing materials and transport for research participants and their parents. Jean Westmacott, Assistive Devices Coordinator, Cerebral Palsy Africa for providing training in making APT assistive devices.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Funding for the study came from the Gibbs Trust, Welsh Government and WCVA’s Welsh Africa Community Links Programme, Powys Health Board Research Funding, and a Jiraffe (UK) Donation.