‘I have learnt to love the child and give opportunities to play with peers’: A feasibility study of the training programme to support parents of young children with visual impairment in Malawi

Abstract

This is a first mixed-methods study, which created, adapted and tested the feasibility of a training programme targeted at parents, community professionals, specialist teachers and volunteers to provide advice on developmental stimulation for children with visual impairment in their homes in rural and urban settings of Malawi. The study followed guidance from the Medical Research Council Framework for Developing and Evaluating Complex Interventions and drew on a bioecological model to help understand the feasibility of a new intervention in Malawi for 30 children with visual impairment and their carers in three districts of Southern Malawi. We trained 14 community workers and specialist teachers, then piloted the programme, which we linked to Care for Child Development (a World Health Organization/United Nations Children’s training package), over 6 months. In total, 10 observations were carried out to measure fidelity of the intervention at the child’s home. Acceptability was accessed through 20 post-intervention interviews and a focus group discussion with carers. Findings show that the new programme enabled workers and parents to be more positive towards their children with disabilities, improving relationships and responsiveness in their interactions. Drawing on the findings of the feasibility study, outcomes identified for a trial include measures of communication, child development, family care environment, participation and inclusion. This study has significance in providing a methodology that can be drawn upon to develop similar training programmes for use with children with a wider range of disabilities. The article has particular relevance to institutions and organisations working in early childhood development in that it provides a model to aid the development of tailored training programmes for children with visual impairment. It puts forward a table of 10 key messages on how best to prepare young children with visual impairment for life at school and for life after school.

Keywords

bioecological systems theory carer child care Malawi training parents visual impairment

Get full access to this article

View all access options for this article.

References

Anderson

Boigon

Davis

et al . (2007) The Oregon Project for Preschool Children Who Are Blind or Visually Impaired. 6th ed. Medford, OR: Southern Oregon Education Service District.

Black

Walker

Fernald

LCH

et al . (2016) Early childhood coming of age: science through the life-course. The Lancet. Available at: http://dx.doi.org/10.1016/S0140-6736(16)31389-7

Bronfenbrenner

(2005) Making Human Beings Human: Bioecological Perspectives on Human Development. Thousand Oaks, CA: SAGE.

Cole

(1996) Cultural Psychology: A Once and Future Discipline. Cambridge, MA: Harvard University Press.

Craig

Dieppe

Macintyre

et al . (2008) Developing and evaluating complex interventions: new guidance. British Medical Journal (BMJ). DOI: 10.1136/bmj.a1655.

Dale

Salt

(2007) Early support developmental journal for children with visual impairment: the case for a new developmental framework for early intervention. Child: Care, Health and Development 33(6): 684–690.

Dale

Sonksen

(2002) Developmental outcomes, including setback, in young children with severe visual impairment. Developmental Medicine and Child Neurology 44(9): 613–622.

Dale

O’Reilly

Sakkalou

et al . (2015) The impact of congenital profound or severe visual impairment (VI) on behaviour development and difficulties in the early years. Developmental Medicine and Child Neurology 57(s4): 38.

Dale

Tadić

Sonksen

(2014) Social communicative variation in 1–3-year-olds with severe visual impairment. Child: Care, Health and Development 40(2): 158–164.

10.

DfES (2006) Developmental Journal for Babies and Young Children with Visual Impairment. London, UK: DfES Publications.

11.

Gallimore

Bernheimer

Weisner

(1999) Family life is more than managing crisis: broadening the agenda of research on families adapting to childhood disability. In: Gallimore

Bernheimer

MacMillan

et al . (eds) Developmental Perspectives on Children with High Incidence Disabilities. Mahwah, NJ: Erlbaum, pp. 55–80.

12.

Gladstone

McLinden

Douglas

et al . (2017) ‘Maybe I will give some help … maybe not to help the eyes but different help’: an analysis of care and support of children with visual impairment in community settings in Malawi. Child: Care, Health and Development 43(4): 608–620.

13.

Gladstone

Lancaster

Umar

et al . (2010) The Malawi Developmental Assessment Tool (MDAT): the creation, validation, and reliability of a tool to assess child development in rural African settings. PLoS Medicine. Epub ahead of print 25 May. DOI: 10.1371/journal.pmed.1000273.

14.

Gona

Xiong

Muhit

et al . (2010) Identification of people with disabilities using participatory rural appraisal and key informants: a pragmatic approach with action potential promoting validity and low cost. Disability and Rehabilitation 32(1): 79–85.

15.

Government of Malawi, National Statistical Office (2008) Population and housing census. Preliminary report, Lilongwe, Malawi.

16.

International Centre for Evidence in Disability (ICED) (2014) The Malawi Key Informant Child Disability Project. London, UK: LSHTM.

17.

Jennings

(2009) Including Children with Visual Difficulties in the Early Years Foundation Stage. London: A & C Black.

18.

Kalua

Patel

Muhit

et al . (2009) Productivity of key informants for identifying blind children: evidence from a pilot study in Malawi. Eye 23: 7–9.

19.

Mackey

Murthy

Muhit

(2012) A validation of the key informant method to identify children with disabilities: methods and results from a pilot study in Bangladesh. Journal of Tropical Pediatrics 58(4): 269–274.

20.

Malawi Government (2013) Malawi Disability Directory. Lilongwe, Malawi: USAID.

21.

Niemann

Jacob

(2000) Helping Children Who Are Blind. Palo Alto, CA, USA: Hesperian Foundation.

22.

Plan International (2016) Protect us! Inclusion of children with disabilities in child protection. Available at: https://plan-international.org/publications/protect-us (accessed 2 July 2017).

23.

Rahi

Cable

(2003) Severe visual impairment and blindness in children in the UK. The Lancet 362(9393): 1359–1365.

24.

Sonksen

Dale

(2002) Visual impairment in infancy: impact on neurodevelopmental and neurobiological processes. Developmental Medicine and Child Neurology 44(11): 782–791.

25.

Tong

Sainsbury

Craig

(2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19(6): 349–357.

26.

Weisner

(2000) Culture, childhood, and progress in sub-Saharan Africa. In: Harrison

Huntington

(eds) Culture Matters, How Values Shape Human Progress. New York: Basic Books, pp. 141–157.

27.

Weisner

(2014) The socialization of trust: plural caregiving and diverse pathways in human development across cultures. In: Hiltrud

Keller

(eds) Different Faces of Attachment: Cultural Variations on a Universal Human Need. Cambridge; New York: Cambridge University Press, pp. 263–277.

28.

World Health Organization (WHO) (2007) Accelerating the elimination of avoidable blindness: a strategy for the WHO African Region for the fifty-seventh session Regional Committee for Africa. Available at: http://who.insomnation.com/sites/default/files/pdf/AFR_R57_6.pdf

29.

World Health Organization (WHO) (2010a) Community-Based Rehabilitation: CBR Guidelines. Available at: http://www.who.int/disabilities/cbr/guidelines/en/

30.

World Health Organization (WHO) (2010b) mhGAP Intervention Guide for Mental, Neurological and Substance Use Disorders in Non-specialized Health Settings. Available at: http://www.who.int/mental_health/publications/mhGAP_intervention_guide/en/

31.

World Health Organization (WHO) (2011) World Report on Disability. Geneva: WHO.

32.

World Health Organization (WHO) and United Nations Children’s Fund (UNICEF) (2012) Care for Child Development: Improving the Care for Young Children. Geneva: WHO; New York: UNICEF.

33.

Yousafzai

Aboud

(2014) Review of implementation processes for integrated nutrition and psychosocial stimulation interventions. Annals of the New York Academy of Sciences 1308: 33–45.

34.

Yousafzai

Lynch

Gladstone

(2014) Moving beyond prevalence studies: screening and interventions for children with disabilities in low-income and middle-income countries. Archives of Disease in Childhood 99(9): 840–848.