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 focussed 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 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 positioning and moving, feeding and communication, play and early stimulation and accessing rights and experiences in the community. The psychosocial support component in embedded into every session. 

Impact summary

A pilot and feasibility study (from August 2017 – June 2018) assessed the following key indicators of impact:

  • Coverage: 41 children and their parents attended the six groups
  • Outcome: the intervention was found to be feasible and acceptable, with a high level of satisfaction reported by participants, facilitators and programme co-ordinators
  • Cost: to be calculated per parent support group (finalised in June 2019)

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

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

Innovation details

The innovation investigates whether a community-based training programme for carers of babies affected by CZS can improve the quality of life, health and well-being of children with CZS and the quality of life of their carers. The innovation integrates a facilitated, participatory, community-based modular programme to empower care-givers in supporting their child’s development and health. The model of empowerment, through peer-support and information sharing, aims to minimise the social, emotional and financial impacts on the children and their families, and to address exclusion and negative attitudes within the community. The use of parents of children with CZS or ‘expert care-givers’ in the role of facilitators helped to address negative attitudes and stigma within the community.

The CZS support innovation is modelled on the “Getting to Know Cerebral Palsy” programme that researchers at the London School of Hygiene & Tropical Medicine (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. This programme has been downloaded more than 2000 times, and is being used globally.

Adaptations made to the CZS support innovation includes a focus on early stimulation, specific health needs (vision, epilepsy), and importantly, the integration of a psychosocial support component. Integration of this component into each session was preferred by both participants and facilitators, as compared to adding a separate session on mental health. This allowed time to build trust and share thoughts and feelings over time.  

Key drivers

Novel intervention

  • There was a clearly identified gap in service provision and an expressed request for assistance in development of support services for children with CZS and their families in Brazil.

Family and parent centred focus

  • Peer-support, and sharing of experiences and information between families, 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 living in the communities in which the groups are run.

Community-based model and non-specialist

  • As the program is not a medical service led by psychologists, it can be offered where there are few services.

Implementation partnerships

  • Partnership with Fiocruz and UFBA have assisted to facilitate plans for replication of the innovation in other regions through Brazil.

Training-of-trainers

  • This model cascades the training through community environments, with supervision and mentoring.

Challenges


 

Insecurity

  • One of the support groups in Rio de Janeiro was attended by only 3 parents because of constraints to travel to the area due to local violence
  • Home visits are in the initial design of the ‘Getting to Know Cerebral Palsy’ programme, However only 4 home visits were undertaken due to safety concerns for visiting facilitators.

Sustainability

  • Barriers to a sustainable system will include financial support for the facilitators.
  • Ensuring ongoing mentoring and supervision for the expert care-givers in facilitating the parent support groups, and the medium by which to do this.

Continuation

The vision is that this programme 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.

The materials are available to trained facilitators on the Ubuntu website (www.ubuntu-hub.org) Ubuntu is a non-profit research and educational hub whose aim is to help improve the lives of children with developmental disabilities, and their families’ and Is based at the International Centre for Evidence in Disability at LSHTM.

We developed and are currently evaluating a training of facilitators programme, where 10 health workers and parents were trained in the establishment of the programme in Salvador, Bahia, Brazil (February 2019) and training will begin in Cali, Colombia in May 2019.

Evaluation methods

Pilot and feasibility study:

Findings from the first two parent support groups led to revision and refinement of the content and delivery of the programme.  An updated training for the facilitators was provided once the new programme structure was agreed. Two further parent groups were then established in each setting and procedures included fast-track learning and data collection over weekly skype calls.

A number of sources of data were collected to give an overall evaluation of the innovation and provided the appropriate information for the assessment of feasibility:

  • Questionnaires were administered by the programme leader to each participant at baseline and the last session
  • Attendance of sessions were monitored through a simple registry, collected by the facilitators
  • Direct observation of sessions were undertaken by the local researchers using a checklist guide
  • Reflective learning - After each session of every group, researchers facilitated informal discussions with the participants to learn what they found the most and least useful elements of that session.
  • A semi-structured interview with 2-3 participants per group took place at the end final session of each group (total 12-18).
  • A semi structured interview with each of the 12 facilitators (2 facilitators per group) took place at the final session.
  • Semi-structured interviews with key stakeholders were conducted with the aim to understand organisational elements of feasibility that were not easily addressed by group participants and facilitators. These included 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

Success was measured in terms of the perceived acceptability and feasibility of the intervention. Data analysis is ongoing, but preliminary indicators of success include:

  • Participation - 5 of the 6 groups were consistently well attended
  • The expert care-givers, therapists and programme coordinators reported a high level of satisfaction with the programme

Results from qualitative interviews demonstrated that parents are highly appreciative of the intervention. Examples of interview responses included:

"We put out our anguish. We arrive here in a way and leave differently. Better we come here sometimes sad or tired and leave relieved."

"We feel comfortable here, sometimes at home they don’t understand us"

 “I like very much to talk about my granddaughter, to talk about her development, to talk about how good it is to me to be here with you. I really love this. Everywhere I go, I tell people about Juntos.

“In reality before this group – I don’t know if you feel the same –  I felt lonely in the world, thinking that this problem was only mine. So when we come to a group like this, we can realise each other’s difficulties; we can understand them; we can also help and we have the opportunity to interact with other children. When we take care of other people, we also take care of ourselves. So here it is the anguish: the project is going to end. Would we disperse? Maybe. I don’t know. But… to me is very good too to be with you. I already miss you.”

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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