Supporting the wellbeing of parents raising children with disabilities and developmental delays : Australia, New Zealand and Canada

Overview

A suite of innovative online programmes has provided vital support to families raising children with disabilities during the pandemic. Using trained peer workers, themselves parents of children with disabilities and developmental delays, the programmes have led to improvements in parents’ wellbeing, hope and sense of empowerment. The pandemic meant that the opportunity to expand the online delivery of the programmes was explored.

Key benefits and outcomes

• Over 700 families supported by the programme, delivered by 30 trained peer workers across 68 groups.
• Improved levels of wellbeing, hope, sense of empowerment and community participation.
• Families supported to achieve goals and become significantly more hopeful for a positive future, acquiring new collaborating skills with professionals, while being less reliant on therapy.
• The programme achieved unprecedented engagement with fathers and families from culturally and linguistically diverse families.

The challenge

In Australia, New Zealand and Canada, families raising children with disabilities were hit hard by the pandemic. Successive lockdowns disrupted routines, created financial uncertainties and led to social and emotional isolation. Support for these families was initially reduced, increasing levels of stress and difficulty adjusting to changed routines.

The solution

Plumtree Learning is an organisation founded and run by parents raising children with special needs. It aims to build family capacity through participation. It stepped in to develop innovative online programmes to support these families. Delivered by trained peer workers, themselves parents of children with disabilities and developmental delays, they support other families facing challenges.

Now or Next, is a 20-hour programme delivered over eight two-hour sessions or four, four-hour sessions, which supports parents of children below school age. For parents of primary school-age children, a ten-hour programme was offered over five weeks: the Child Voice programme for parents of primary school-age and the Student Voice programme, for parents of high school-age students.

Through fun and engaging activities, participants learn a variety of skills including how to set long-term goals for their child, and how to prioritise; identifying strengths; how to increase wellbeing and resilience; and learning how to partner with and create positive relationships with professionals.

The programmes built on an existing peer leadership programme (PLP), an evidence-based programme based on positive psychology, which provides tools to achieve goals and drive positive outcomes for children and the whole family.

Results and benefits

The online programmes currently reach over 700 families and have trained more than 30 peer workers through 68 groups. In both programmes, online groups demonstrated outcomes comparable to those obtained by face-to-face groups.

Results for the families attending the eight-week online programme showed improvement in parents’ wellbeing, hope and sense of empowerment. They found that delivering programmes in the first-language for culturally and linguistically diverse families realised more positive outcomes.

These online programmes increased access for groups that are often underrepresented in support programmes. An unprecedented 48 per cent of attendees came from culturally and linguistically diverse families, and 26.6 per cent of attendees were fathers.

Results showed more successful outcomes for the five-week format for those from culturally and linguistically diverse families (CLD). This may be because some CLD families faced higher levels of stress in terms of socioeconomic factors and childcare. Therefore, a time-efficient programme that can achieve comparable effect than the full-length ones are likely to be appreciated by CLD families.

Evaluation of the five-week programme significantly improved agency, wellbeing and enhanced community participation. Families were supported to achieve goals, significantly become more hopeful for a positive future, and acquired new collaborating skills with professionals while being less reliant on therapy.

Trained peer facilitators add to the scope and variety of services available to families and act as local leaders to sustain these results. The programme has also built a thriving community of practice of over 2,000 participants, including parents, emerging peer leaders and supporting professionals.

Overcoming obstacles

A key challenge was obtaining enough funding to offer the programmes free of charge to families. Funding from two government sources was obtained so that the courses were free for all parents who were not in receipt of disability funding.

A further challenge was engaging parents online during lockdowns when children were at home and parents are also working from home. This was addressed by co-designing a new social media campaign and reaching parents who were searching online for ideas to address their concerns.

Future proofing

Additional funding will allow Plumtree to scale up this innovation and cover facilitation, ongoing evaluation and data collection costs. It would allow the programme to be offered free of charge to more families.

To support the expansion of the programme, Plumtree will conduct further evaluations. This will include measuring outcomes on empowerment, progress for children, access to community resources via peer networks, and assess its effect on family outcomes. Plumtree will also collect feedback on the acceptability, engagement and usability of the online peer support programme for refinement.

The post-pandemic surge in mental health means the workforce is struggling to meet demand. To address this, Plumtree will offer family leadership training to parents, who can coach other parents to become peer workers.

This programme is scalable and ready to expand worldwide to enable vulnerable and diverse families with disabilities from urban, rural and remote regions to participate in peer-led workshops and leadership training and ‘build back better’ in the aftermath of the pandemic.

Takeaway tips

• Use people with lived experience. It is evidenced that peer support models are effective, and it helps address issues around availability of mental health workforce.
• One size does not fit all – some groups may prefer shorter, more focussed support and delivering support in the first language of attendees can help improve outcomes.

Contact details

Main contact: Dr. Annick Janson, Associate, Centre for Applied Cross-cultural Research, Victoria University of Wellington, New Zealand; annick@egl.ac.nz

Organisation’s website: tinyurl.com/plumtree-learning