Baby & Us-Down Syndrome parenting course

Down Syndrome (DS) prevalence in Chile is higher  compared to other countries in Latin America and globally and there are studies reporting an increment recently (Nazer & Cifuentes, 2011). People with DS usually have physical, intellectual and emotional disorders (NIH, 2017). In Chile, most parents receive the diagnosis postnatally, which affects maternal and family mental health, as well as child development (Paul et al., 2013). Interventions usually include the children with DS, but not parents (Peterson et al. 2007).

Our solution consists on adapting and translating the popular and effective Empowering Parents Empowering Communities programme, an international evidence-based parenting group for parents of babies, to the Chilean context and for parents of babies diagnosed with DS.

Our solution aims to (i) boost parent confidence, well-being, knowledge, skills and social support , (ii) improve the parental bonding, infant-relationship and interaction, and (ii) nurture the adaptation and development of babies with DS.

1 in 600 children are diagnosed with DS globally and 1 in 450 are diagnosed in Chile every year, being the prevalence much higher in this Latin American Country. 

Usually, the diagnosis in Chile is made posnatally, which means that it is generally unexpected and it causes shock, fear, anxiety, sadness, confusion, stress and a sense of loss, among other intense emotions. This can increase the likelihood of maternal mental health problems in the pospartum period (depression, anxiety, PTSD, suicidal thoughts or attempts), which is around 13% globally.

According to United Nations, it is essential to consider  the context where the child develops in order to adequately approach disability and special needs. Family context can be an interfering factor or a protective factor. Quality family interactions, family environment, parenting attitudes, family stress and coping strategies as well as formal and informal support are  key factors in the development of children with Down´s Syndrome as well as in the protection of maternal mental health. 

Our solution, Baby and Us for Down´s Syndrome (B&U-DS), aims to provide with this important protective factors to the families attending the courses.

Empowering Parents Empowering Communities Baby and Us is an evidence-based group community method of prevention and early intervention that  supports families with an infant aged 0-12 months.  As a solution, this project will produce an innovative version of the EPEC Baby & Us programme specfically designed to meet the needs of Chilean parents with an infant affected by Down’s Syndrome. This programme Will be called Baby & Us – Down´s Syndrome (B&U-DS) and it will be delivered online because of this global pandemic, where isolation is negatively affecting maternal mental health and child development.

B&U-DS is an 8-week community parenting group that combines the latest developmental science and theory with evidence-based parenting methods. It aims to (i) boost parent confidence, well-being, knowledge, skills and social support , (ii) parental bonding, infant-relationship, and (ii) nurture and  the adaptation and development of babies.

Baby & Us-DS will be led by parent leaders from the community. It will use an online group format with individual and group activities and information sharing. Topics will include  attachment,  emotions, routines, communication, play and parental stress management, social support and security, which improves mother-infant attachment, social support and reduces the likelihood of maternal mental health problems.

The target population are mothers, fathers and their babies, diagnosed with Down´s Syndrome, aged 0-18 months. We are aiming to include participants from Santiago de Chile and Valparaíso, two important chilean regions.

Our solution aims to (i) boost parent confidence, well-being, knowledge,
skills and social support , (ii) improve the parental bonding,
infant-relationship and interaction, and (ii) nurture and facilitate the adaptation and development of their babies.

In order to understand participants´needs and according to the EPEC model, we are planning to include these participants in the earliest phases of the project. We would like some of them to read the manuals and to make suggestions and comments to the parenting course. Besides, we are going to make encounters between parenting professionals and parents from the community. That would make a project where they could have their needs met. 

Also, we are going to launch open online workshops with EPEC team in the UK, where we plan to discuss relevant topics related to Down´s Syndrome and the impact of parenting in child development, explaining the impact Baby & Us -DS can have.

Finally, we are going to develop online interactive materials in order to ease participation in this context.

This Challenge aims to offer women and newborns care to survive and thrive.

Maternal mental health is threatened for mothers of children with DS, as the diagnosis in Chile is usually made postnatally and, therefore, there has not been enough emotional preparation to process it. Thus in this case, the postpartum period, where there is more susceptibility to suffer from a psychiatric or psychological disorder (13%) implies more stress factors and more vulnerability. 

Maternal mental health problems negatively impact child development.

Our solution helps these mothers feel supported and empowered, through the group parenting courses and also helps their children.

Our solution is innovative because:

1. It would be the first trial of EPEC in South America. Though EPEC team had successfully tested with Spanish speaking population in UK,  this would be the first opportunity in Latin America and the first time considering babies with Down´s Syndrome. There are no many parenting courses with EPEC features (parent-led, with a certified training system) and there are even less for parents of children with any disability.
2. It will produce a codesigned version of EPEC attuned to the language and culture of Chilean parents and families with children with Down´s Syndrome.
3. Baby and US is well developed and part of routine delivery in UK.  There are no similar programmes in Chile.
4.  The adaptation of B&U for infants with Down´s Syndrome is innovative.  It has not previously done globally.
5. Our solution will test a leading parent led, evidence-based, low cost model of parenting programme with huge potential for further dissemination across Chile and South America, a Country with high poverty and inequality rates.  

EPEC uses a proven method of parent-led intervention delivery in which its courses are led by parents from the local community.  Parents receive 60hrs of  manualised and accredited training to become EPEC parent group leaders.  After initial training, parent group leaders are regularly supervised and quality assured by parenting specialists.

Baby & Us-DS will be led by parent group leaders.  It will use a group format involving individual, small and large group activities, group discussion and information sharing.  Course topics will include parental bonding and attachment, Down Syndrome, feelings and emotions, managing infant sleep, feeding and routines, communication, interaction and play; and parental stress management, ralationships and social support and security, which improves confidence and participants´social support and reduces the likelihood of maternal depression, anxiety or other important mental health symptoms. Also, this can improve the attachment and relationship quality between the mother and the baby, which provides as an important protective factor for child development.

EPEC has developed a wide range of online resources including successful high reach and engagement Facebook, Instagram pages and YouTube channel. Also, Qualtrics, a specialised programme is used in order to assess the impact and quality of the courses.

EPEC UK has wide expertise in delivering parenting courses face to face as well as online.

The online meetings are done via Zoom and Microsoft Teams. The groups are also supported by written information sheets, films and video clips.  These are all in English so, therefore, this solution implies the translation of this material.

On the one hand, EPEC team has a long history of development and research of courses for families, with a community approach. This expert team runs routine outcome measures and researches. One of these studies is a Randomised Controlled Trial, where they have found:

- Significant improvements in positive parenting practices and child problems as well as parenting stress.

- Significant improvement of parental confidence,  and knowledge of and confidence delivering parenting groups.

Link: http://www.cpcs.org.uk/uploads/Empowering%20Parents%20Empowering%20Communities%20(EPEC)/EPEC%20Evidence%20and%20Outcomes.pdf

On the other hand, Downup Foundation, an association from 2014, created in 2017 in Santiago de Chile the unique Welcome programme, which consists of the welcoming of the family and the baby with Down Syndrome to the Downup community. Downup members visit and train the new families and, after that, they get connected to the Foundation and can benefit from the activities, courses and support. Since then, there are programmes in Santiago and also in other chilean regions (Araucanía, Ñuble, Bio-Bío, Valparaíso). We have welcomed more than 98 families and we have had more than 2500 beneficiaries in our 4 programmes (Welcome, Family School, Training for health centres and health and life community). We are now a chilean reference institution for families with children with Down Syndrome.

You can access the website of the foundation, with our programmes and projects here: https://www.fundaciondownup.cl/

The psychosocial needs of families living in socioeconomically disadvantaged areas outstrips the professional service provision available. The above is even more evident in case of families with children with Down´s Syndrome, where more interventions, professionals and resources are needed. In Chile, a country of marked social inequality, this resources and interventions are not available for many families. Besides, profession-delivered evidence based parenting courses are less available to and used by families from socially disadvantaged areas and minority communities. 

Evidence based peer-led parenting programmes that rely on effective partnerships between community members, local populations and healthcare providers are one method by which to increase scale of provision, increase families’ access to effective care and support, reduce stigma and reduce the gap between population need and effective help. The development of peer-led approaches that are combineed with professional service adds value by increasing the reach of professional knowledge and expertise and mobilising partnerships with communities.

Parenting is the single most powerful influence over children’s immediate and future development and outcomes.  Group format parenting programmes are established methods to optimise parent skills and knowledge, their emotional involvement and interactions with their children. As with professional-led approaches, peer-led parenting interventions need to use evidence based parenting content, findings from developmental science and solid intervention methods. Peer-led approaches require parent group leaders with the requisite knowledge, skills and experience to engage hard-to-reach and excluded families and to deliver high quality courses. Delivery in local,  easy-to-access community locations will mobilise local communities and reduce barriers to care. This barriers could be more reduced with an online intervention, like the one we are proposing on our solution.

Many parents of children with DS feels that they are alone living their reality. Group format peer-led interventions also have the potential to promote social networks and social capital, reach populations who find it difficult to engage with professional health and social care services and provide pathways for the empowerment of individual community members.  

Current number of people we are serving: Our Foundation Serves currently 120 families and 2500 beneficiaries. This is around 7% of the chilean families with a children with Down Syndrome. Around 35% of them are families with a baby (0-18 months) with Down Syndrome.

Number in one year: We expect to reach at least 200 direct beneficiaries  (mother-partner-baby) per year with our new B&U-DS  groups. However, we now that these kind of interventions have direct as well as indirect impact, because siblings, other family members, neighbours, friends benefit from this intervention. Therefore, the total number of beneficiaries could be more than 400 people in a year.

Number in 5 years: We expect to reach at least  1000 direct beneficiaries in the next 5 years with our new B&U-DS. According to what we mentioned above, if we add indirect impact, we could reach more than 2000 people in 5 years.

Finally, if we consider other chilean regions, other disabilities (autism, spina bifida) or other Latin American Countries, something we are planning to do as soon as we have a solid course in Chile and with parents of babies with Down Syndrome, we could reach even more direct and indirect beneficiaries in 5 years.

During next year we would like to develop experience in developing EPEC Baby and Us courses in 2 regions in Chile (Valparaíso and Santiago) as well as to make improvements to the course to have a rigurous and quality programme. This process will include evaluations, revisions and supervisions, by EPEC team in London. Also, we want our parent participants to be part of this and we will include them and their opinions and suggestions during these process.

Goals within the next 5 years: We expect to grow and develop EPEC in other chilean regions where we have also families, like, Bio Bio, Ñuble and Araucanía. These parts of Chile tend to have less support, resources and interventions and, therefore, more likely to have more families in vulnerable situacions. Thus, it is crucial to reach them, once the programme is well established after we run the pilot study.

Finally, it is important to mention that, as soon as our program gets good quality and solid results, we would like to expand the course to other target population in Chile (parents living in poverty, parents of children with other disabilities) and to other spanish speaking countries in Latin America.

We consider that cultural barriers are those who could interfiere most with our project.

Nowadays people from society tend to assume that women should raise their children individually and, therefore, they lack support in child caring. Considering the above, the burden is greater with a child with Down Syndrome, because the family, professional and social support that is needed is higher and these women could feel more exhausted, but they could also feel that they should raise their children by themselves.

Besides, parenting courses are usually led by professionals, not by community parents. Our solution involves a cultural change because people are used to receive professional help. We would need to work in order to prevent make families trust in the quality of the course 

Finally, time and current lifestyle could interfiere as a barrier, as many women with children with Down Syndrome may not have enough free time to enrol into this kind of course. 

We think that it would be very important for us to inform about the evidence of the programme and about our alliance with EPEC team in London as well as describe the proven benefits of it. Besides,it would be important to conduct preliminary and interesting workshops, including EPEC team, related to parenting and to the development of children with Down Syndrome in order to make sure that people get interest in these topics and understand the relevance and quality of the course.

We also believe that his online modality and also the Baby and Us course, wich includes the babies in all the session courses can be a good format for the time and child caring issues that many women may have nowadays. They would be able to be at home to attend the sessions.

Our solution team is a non-ptofit foundation.

This would be the team:

Leire Fernández: Lead of the solution and clinical psychologist. Group facilitator and supervisor.

Andrea Allamand: Director of Downup Foundation. Group facilitator.

Valentina Vallejo: Clinical psychologist. Group facilitator and supervisor.

Tamara Tenham: Psiquiatrist. Group facilitator and supervisor.

Manuela García and Georgina Martínez: Facilitation support in Valparaíso.

Florencia Canessa: Psychology assistant.

Crispin Day: Director of EPEC Team. He will supervise and guide our project.

Jo Nicholls: EPEC supervisor and trainer. She will supervise and guide our project. 

Designer and social media: She will help with the development of dissemination documents and social media.

Our solution consists of a multidisciplinary and international team.

Downup foundation started in 2014 in Santiago. Since then, we have supported many families from different regions in Chile with our specialised and deep programmes, offering them training, emotional support and a growing community. Our focus is to empower them and make them feel part of our community. We train them in order to have them as partners who can support other new families. Our institution is pioneer and a benchmark in the field of parenting and disability in Chile.

Baby and Us course and Empowering Parents Empowering Communities: this unique model, developed by parenting experts and community parent leaders, has supported more than 2000 parents and reached over 4000 children. EPEC belongs to the Centre for Child and Parent Support, which is part of the National Specialist Child and Adolescent Mental Health Directorate of the South London and Moudsley NHS Foundation Trust. This Institution has close links with King´s College London and also with other renown academic institutions in the UK, Europe and Australasia.

Valentina Vallejo and I are clinical psychologists and both of us have been trained and have done an internship with the EPEC team in London and, therefore, we know the model in a deep way and we believe we could work together, alongside with Downup Foundation and EPEC team in order to adapt and translate the programme.

As Downup Foundation we have current partnerships with big government institution. One of them is Chile Crece Contigo, the biggest chilean institution that provides support for children and their families. This institution recognises Downup as an important Foundation for families of children with Down Syndrome and connects the families with the Foundation.

Besides, we have alliances with the Undersecretary of Childhood and National Service of Disability, we collaborate with this goverment institution by developing reflective meetings that aim to focus on the rights of children with Down Syndrome and their families. We also are active member of the "Disability pact", where different organizations work for the social inclusion of people with any disability.

We also have alliances with Pontificia Universidad Católica de Valparaíso, as some of our team members work there and are developing projects related to perinatal psychology.

Finally, as former students and researchers of King´s College London and Institute of Psychiatry, Psychology and Neuroscientes, we also have alliance with this Institution. 

The Centre for Parent and Child Support (EPEC team) dissemination globally is managed through the Centre for Parent and Child Support, South London and Maudsley NHS Foundation Trust/King’s College, London. South London and Maudsley NHS Foundation Trust is a large successful public health hospital based in south London.  King’s College, London is an internationally renowned UK university. 

EPEC is a low cost, effective and popular parenting programme widely disseminated in the UK and Australia. 

Key resources: psychologists and parenting specialists, parent leaders and the staff, EPEC online resources (webpage, qualtrics online assessment program) and collaborations as well as supervisions with EPEC team.

Partners + key stakeholders: EPEC team in London, King´s College London, NHS, Pontificia Universidad Católica de Valparaíso, Chile Crece Contigo Foundation, Subsecretary of Childhood, municipalities, National Disability Service (SENADIS)

Cost structures: Staff, online platform and online programmes, internet and data plans, workshops with international experts.

Key activities: difussion activities, parenting courses, group-parent discussions, team meetings, parent leader trainings, professional supervisions, managing online platform, feedback meetings with participants and EPEC team in the UK.

Type of intervention: parenting courses for parents with childrens with Down Syndrome.

Value proposition: social capital, free, preventive course for parents of babies with Down Syndrome, social inclusion opporttunity, job opportunity for people living in vulnerable situations, prevention in maternal mental health.Impact: pre and post quality assessments. Cost effective intervention.

Channels: online platform and social media (Facebook, Instagram, Whatsapp groups), reports, videos, parent handouts.

Surplus: marketing and creation of new courses

Segments: parents of children with Down Syndrome and babies with Down Syndrome in Chile, health services, associations of families of children with Down Syndrome, in particular we aim to work with those living in poverty or in vulnerable situations.

Revenue: free parent education, child development, decrease of inequality and isolation, cost-effective intervention. We are going to run regular quality assessments.

As Dowunup Foundation we generate investment from service commissioners, philantropists, NGOs and private funders to underpin the mainstream delivery of EPECB&U-DS. 

Private fundings: private institutions that regularly open funds related to disability and inclusion.

Public fundings: public grants and funding for community projects by the National Service of Disability (SENADIS), and municipalities (Municipalidad de las Condes).

We also usually sell calendars and products related to Down Syndrome and development stimulation.

We would like to run low-cost parenting courses and seminars related to parents and professionals about parenting, inclusion and Down Syndrome.

Also, we are thinking of starting with our Foundation and with courses for parents of children with Down Syndrome and, in a while, we are planning to make alliances with other Foundations in Chile that helps families affected by other conditions (autism, spina bifida, cerebral palsy, etc.).

We emphasized mainly technical (training) and cultural (maternity beliefs and prejudices, time) barriers, that could negatively affect the development of our solution.

Becoming a solver would involve the opportunity to have specialised support from experts, peers and MIT advisors and we could have the chance of making our solution more innovative in order to recruit more participants, especially those who are in more vulnerable situations, who could be more severely affected by the barriers that we mentioned above. Also, we could have advice on the way we could have to expand this project to other countries in Latin America.

Also, attending the MIT well-renowned institution and sharing our solution with more than 400 experts  would be challenging as well as an incredible growth experience as a team and as young professionals. Besides, as a team, we believe we could learn from the experience of attending the Solve Finals.

Finally, we need initial finantial support in order to develop the pilot that we have planned and we could have an important amount of money if we achieved this prize that could take us to a big and very important project that could help many families in Latin America.

Although EPEC team in the UK have develop the whole model, we need to translate and adapt the model to the Chilean context, which is very different to the UK, in terms of demography, society, inequality.

Therefore, we would need expert teams to advice us about the way to adapt the EPEC model to the chilean context in order to develop a successful pilot programme in this country. Achieving this goals would give us the chance to develop a quality project and it would be easier for us to make the project grow and share it with as many people as possible.

We would love to partner with other organizations or teams related to Frontline of Health, Community-driven innovation, disability or early childhood development in different places of the world.

We have read about Dost Education (by Sindhuja Jeyabal), Kinedu (by Luis Garza) solution and it would be valiable to partner with or have advice from them.

Also, Retos solution (by Diana Duarte), which has an interest community approach that we could learn from.

Finally, E-Heza solution (by Wendy Leonard) has some elements in common with our solution and could help advance our solution.

Our solution (group parenting course for parents and their babies) would be adapted to be delivered online because of the pandemics and, therefore, we would need technological devices as well as internet broadband plans for families living in poverty, with no acces to the internet or to mobile phones or computers/tablets to connect to our groups. Therefore, if we achieved this prize, we would be able to guarantee access to groups to more participants than initially planned. Also, we plan to deliver online international workshops and, having this prize, could help us deliver more online workshops, including more advance technology in order to develop better activities.

Our solution consists of group-parenting courses which aim to support new mothers of children affected by Down Syndrome. We would like to create parent communities, that can support these mothers and make a cultural change in the way we raise our children. Women, when they raise their children by themselves, without any help, suffer from a huge burden, that negatively impacts their mental health and, therefore, their children physical and mental health.

This is more evident with a baby with Down Syndrome, particularly when the diagnosis is made posnatally, which is very common in Chile.

Our solution would train and pay parent leaders so they can teach and support other community members. This could not only improve maternal mental health and child development, but it could improve community resources and unemployment.

We would use this award to make a bigger pilot, including more participants and groups and including other chilean regions to this solution.