Innovation summary

Looking after a child with severe developmental disabilities, such as Congenital Zika Syndrome (CZS), can place an enormous strain on families, who are usually the main carers for the child. This impact will be even more pronounced for families with children with CZS since it disproportionately affects poor communities. The zika virus (ZIKV) response has largely focused on the prevention of infection and development of diagnostics and treatments. There is an awareness that there is a need to provide family and supportive services in addition to clinical services. However, there is lack of clarity as to how this should be done, and these services are currently patchy and not comprehensively available.

This innovation aims to support the families, both in terms of providing psychosocial support and in improving their skills, to be able to care for their child optimally. The intervention is offered through parent groups, led by facilitators that include parents of children with CZS. The programme includes 10 sessions offered over 3 months for groups of parents and their child, with sessions on feeding, positioning, communication, play and more, and psychosocial support as part of every session. ​

Impact summary

The study will assess the following key indicators of impact:

  • Coverage: 6 parent groups (total of 60 babies with congential zika syndrome and their families)
  • Outcome: the intervention is feasible and acceptable
  • Cost: to be calculated per parent support group (finalised in March 2018)

 

"Falam a nossa lingua," literally: "they spoke our language."

 

- Mother from the Rio support group, when discussing how she felt included

 

Innovation details

The CZS support innovation investigates whether a community-based training program for carers of babies affected by CZS can improve the quality of life, functional ability and nutritional status of children with CZS and the quality of life of their carers. The innovation integrates a facilitated, participatory, community-based modular program to empower care-givers to maximize their child’s development and health. The model of empowerment, through peer-support and information sharing, aims to minimize the social, emotional and financial impacts on the babies and their families and to address stigma within the community. The use of not only therapists but ‘expert care-givers’, themselves parents of children with CZS, in the role of facilitators helps to address stigma within the community and promotes safeguarding in this vulnerable population. 

The CZS support innovation is modeled on the “Getting to Know Cerebral Palsy” program that LSHTM have been instrumental in developing. It is a participatory intervention aimed at increasing the knowledge and skills of the parents at caring for a child with cerebral palsy. Research to date has highlighted the positive impact of the intervention with a provisional evaluation demonstrating a significant improvement in the quality of life of caregivers. To date, this program has been downloaded more than 2000 times, and is being used globally.

The adaptations in the present innovation include a focus on early stimulation, specific health needs (vision, epilepsy), and importantly, integration of a psychosocial support component. Integration of this component into each session was preferred to adding a separate session on mental health, as this session could be quite difficult, especially since sessions are not led by clinicians.  

Key drivers

Novel intervention
There is a clearly identified gap in service provision and an expressed request for assistance in development of support services for the babies with CZS and their families in Brazil.

Family and parent centred focus
Peer-support and information sharing drives the success of this program.

‘Expert care-givers’ in the role of facilitators
This feature facilitates cost-effectiveness, scalability and sustainability as they are parents of children with CZS.

Community-based model
As the program is not a medical service and not led by psychologists, it can be offered where there are few services.

Implementation partnerships
These will assist to facilitate sustained impact at scale.

Training-of-trainers
This model can cascade the training through community environments.

Challenges

  • Ensuring ongoing mentoring and supervision for the expert care-givers in facilitating the parent support groups.
  • Barriers to a sustainable system will include financial support for the facilitators.
  • Fragmented home visits were possible due to safety concerns for visiting facilitators.

Continuation

The vision is that the program will become internationally available as soon as possible through open access sources, so that it can contribute towards the support of the babies with Congenital Zika Syndrome and their families in all settings.

This would include the following:

  • Coordinating a committed community of practice, which includes high level stakeholders such as WHO and its regional offices, and PAHO to assist with advocacy and planning, as well as individual implementers of the program.
  • Development of a high quality website with all the course material and training material, including video and other educational resources. The website would ideally be linked to high profile organizations, such as WHO, PAHO etc to attract high visibility.
  • Running a training of trainers program, where 10-15 people are trained in the establishment of the program.
  • Hosting a high-level dissemination meeting in Brazil and in the UK, including stakeholders such as WHO and its regional offices, PAHO, International Agencies and Disability NGOs, as well as key Brazilian Partners.
  • Sharing the information gathered through publication in peer-reviewed journals, writing of policy/advocacy briefs, and a full project report.

Evaluation methods

Plans for monitoring and evaluation include assessing the feasibility and acceptability of the innovation:

Findings from the first two parent support groups will lead to revision and refinement of the content and delivery of the program.  An updating training for the facilitators will occur once the new program structure has been agreed. Two further parent groups will then be established in each setting (Salvador and Rio de Janeiro; groups 3, 4, 5 and 6).  The procedures include fast-track learning and data collection over weekly Skype calls.

A number of sources of data will be collected to give an overall evaluation of the program and provide the appropriate information for the assessment into feasibility:

  • Questionnaires will be administered by the program leader to each participant during the first and last session.
  • Attendance of sessions will be monitored through a simple registry which will be collected by the facilitators.
  • A semi-structured interview with 2-3 participants per group will take place at the end final session of each group (total 12-18).
  • A semi structured interview with each of the facilitators (2 facilitators per group, total =12) will take place at the final session.
  • Reflective learning. After each session of every group, researchers will facilitate informal discussions with the participants to learn what they found the most and least useful elements of that day’s session.
  • Direct observation of sessions will be undertaken by the local researchers using a checklist guide.
  • Semi-structured interviews with key stakeholders with regards to elements of feasibility that cannot be easily answered by group participants and facilitators. This may include questions around integration into existing systems and opportunities for expansion.

Cost of implementation

Cost of the sessions will be assessed by analyzing the budget and establishing an overall cost in addition to a figure of cost per participant. Costs will include the cost of transport to and from the training session, cost of facilitators, costs of refreshments and any other miscellaneous costs (room hire, equipment, etc).  Costs of researchers will not be included as these would not ordinarily be a part of the program. 

Impact details

Impact of the innovation will be assessed in March 2018 after the initial assessment of feasibility and acceptability.

References

  1. Bowen et al (2010) ‘How we design Feasibility Studies’, Am J Prev Med, 36(5): 452–457.
  2. Mobarak, R (2000) ‘Predictors of stress in mothers of children with cerebral palsy in Bangladesh’, Journal of Paediatric Psychology. 25(6): 427-433
  3. Murthy GVS, Mactaggart I, Mohammad M, et al (2014) ‘Assessing the prevalence of sensory and motor impairments in childhood in Bangladesh using key informants’, Arch Dis Child,99: 1103–1108.
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