Transforming support for families raising disabled children and youth [NZ Telehealth web publication]

 

NZ Telehealth website: https://www.telehealth.org.nz/projectandresearchlibrary/transforming-support-for-families-raising-children

Transforming support for families raising disabled children and  youth

Enabling families from remote and international sites to access support.

Type of Project Research, Project
Stage of Completion Completed
Area of Interest Youth
Health Domain Whānau
Geographic Region International
Priority Population Disability, Rural
Organisation: Plumtree Learning & Fast Track Inclusion Trust

Overview

In response to the pandemic, Plumtree Learning transformed its services to ensure that families raising children with disabilities and developmental delays continued to access support. The pivot to digital made it easier for families from remote and international sites to access support, minimised disruption to goal planning, and supported decision-making.

Key benefits and outcomes

1. Enabled families raising children with disabilities to access important resources and drive goal planning from their homes during lockdowns.
2. Facilitated access support for families from remote and international sites.
3. Up to 96 per cent of families were supported to achieve the goals they set, with outcomes of the online programme comparable to the programme when delivered face to face.
4. Enhanced wellbeing, hope and empowerment for families.

The challenge

Plumtree Learning is an organisation founded and run by parents with lived experience, raising children with special needs. It aims to build family capacity through participation, by running evidence-based programmes to increase families' empowerment, hope, agency and wellbeing. Its programmes were traditionally delivered in person, however COVID-19 and related lockdowns meant that delivering existing face-to-face support was no longer possible. The decision was taken to move the programme to an online format.

The solution

An implementation team was set up to scope further innovation using a project management approach, which explored the best platform to use, how to accommodate international families, how to make sure a co-production approach was taken, and to evaluate the outcomes of the programme.

An online implementation process was trialled where parents could participate in a creative visioning process – an evidence-based, visual goal-setting tool rooted in gamification – conducted via Zoom.

Families with lived experience co-designed and facilitated the online programmes. These peer workers are also participant-observers and collect data in real time during programmes. Participants were given templates in which to summarise their goals and plans, and these templates were refined as the programme developed.

A research collaborative, including researchers from 10 universities in New Zealand and abroad, monitored the planning and roll out of the intervention. This pilot was planned to support moving online, a process that had been established in a face to face environment. This process supported families to identify goals they would like to achieve, providing them with an effective accessible decision-support mechanism, and an opportunity to build agency as they identify, discuss and prioritise the goals to achieve their vision.

Results and benefits

The project trialled an online platform to enable families to continue to access important resources and get involved in their goal planning from their homes. It also made it easier for families from remote and international sites to access support. A pilot of the first virtual visioning platform was first trialled with a group of ten families and professionals. It established that its outcomes compare to the face to face benchmark results and provided feedback on modification before large scale roll out.

Results of the large-scale intervention show that an average of 87 to 91% of families who engaged with the online programme achieved their child, family and personal short term goals, defined as first steps in achieving their long term goals. The process is based on images, not words, making it more accessible to those who have English as their second language.

An added benefit was the supported decision-making aspect of this programme. The professionals involved were able to use a new and powerful way to formulate goals with families while building unprecedented rapport in a strength-based and time-efficient way.

Overcoming obstacles

It was a challenge to understand what would work best online and how we would be able to gather participant responses. To gain understanding, the research team conducted surveys and asked past participants for their feedback. To increase awareness of the programme to professionals, a newsletter targeted at health professionals was distributed.

Plumtree Learning assembled a list of potential funding bodies to guide applications to support development of the online platform. Translating the gamification aspect of Pictability online was challenging and required funding.

Future proofing

To sustain and grow the programme, Plumtree Learning need to obtain funding to:

●  continue researching and building evidence on the use and impact of the goal setting online platform.
● create new training programs for facilitators to work with E-Pictability with families.

●  continue adding specialised technological capabilities to the platform to expand its use.

Takeaway tips

1. Gather feedback from participants to identify areas of improvement.

2. Take a project management approach to transferring programmes online, and be aware that evaluation and learning may require changes in how services are implemented.

3. Online provision of services can reduce barriers for people to access the service, including those who live in remote areas and internationally.

Watch the recording of the presentation at the NHS Confederation’s Mental Health Network (MHN) and the International Initiative for Mental Health Leadership here.

Online resources for families http://tinyurl.com/disability-peer-learning (screenshot on left). Over 12 hrs in total. Started 10 years ago, this collection of interviews includes 410 interviews with people sharing knowledge, reflections, thoughts and generally “what works” for them. Channel reach: ~1⁄4 Million views.

Online resources for youth (screenshot below): Our free Virtual Model online course coaches young people to grow their impact, connecting disabled people to community and mainstream (https://www.udemy.com/course/virtualrolemodels - 6890 students).

Dr. Annick Janson, leading this project trained as a clinical psychologist, she was awarded her PhD by the Management School at the University of Waikato. Her thesis followed the leadership development path of people who in part used social media and online interactions. Annick is also the New Zealand Association of Positive Psychology (NZAPP) Co-President (https://www.positivepsychology.org.nz).

An International Research Consortium funded through a research grant from the Melbourne Disability Institute is dedicated to evaluating our impact. The consortium includes researchers from 5 Australian, 2 New Zealand, and a USA academic institutions. The consortium was established in 2019 and is very active. It is led by Dr. Peggy Kern, Assoc. Prof. Psychology, Melbourne Graduate School of Education a recognised expert working in schools across Australia, and Dr. Annick Janson.This included reviewing and updating our manualised research protocol document, ethics approvals and data analysis methodologies. Their evaluation was consistent with the initial 2018 external evaluation. They also provide recommendations, such as updating our ethics approvals and shortening the number of survey items so as to optimise participants’ response time and concentration, which have been implemented. The team is distributed and meets every fortnight.

The Centre for Disability Studies, University of Sydney trained our parent-facilitators to collect data as participant-observers and then surveyed their performance. Parent facilitators are also trained all year long via a peer-worker coordinator through ongoing performance evaluations. Remaining data is collected via automated protocols (sending a survey following a specific session), or via coordinators (investigating red flags, such as low wellbeing scores). Data are collated in real-time through a bespoke online platform which collects documents, photos and materials so:

• Facilitators receive ongoing feedback on participants engagement
• Coordinators monitor participants’ progress for quality control
• Researchers receive data as it is collected

Please browse through our publication list.

The graph below summarises our virtual reach through a total of 5 projects in the disability sector, including the present project: A total reach of 472,471.

Dr.Annick Janson - Contact details: annick@plumtreelearning.com 027 2881949 Updated July 2023

Appendix to the Digital Health Week Abstract submitted by Dr. Annick Janson, HiNZ 2023