Summary of our Consumer voice in the Disability sector project
The results of our Family Consumer Leadership Development work is available through the Te Whanau Kotahi website at: www.twk.org.nz/changestories See the Abstract describing the intervention below.
ABSTRACT
Dr. Annick Janson, Associate, Centre
for Applied Cross-cultural Research, Victoria University of Wellington
Barry Davies, General Manager,
Te Whanau Kotahi, Tauranga
The Consumer Storytelling project addressed
knowledge gaps surrounding user experiences in the Disability sector: “What
difference do services make to consumers?” and “How do consumers navigate services
through milestone family events to achieve a ‘Good Life’? [as per the Enabling Good Life Ministry of
Health/Office for Disability Issues initiative]
A Peer Knowledge-Sharing of Lived Experience
model was developed as a proof of concept to:
- Enable a diverse group of consumers to recount their experiences by putting in place effective and targeted mechanisms to capture stories and
- Test a participative story selection and evaluation methodology mechanism to represent and honour the diversity of consumer voices.
Te Whanau Kotahi Trust, which provides child
development services in the Western Bay of Plenty under MOH contract
commissioned the project. They were keen to understand family/whanau
perspective of services offered and what advice could be widely shared from
families personal experience.The consumer storytelling project was seen as
closely aligned to the Te Whanau Kotahi vision: "Children and
families/whanau are valued and included in the social and economic fabric of
our communities".
Thirty
telephone interviews, 3 workshops and 10 individual video recording sessions
were carried out. The study outlined a continuum of leadership experiences working
at four levels (self, family, peers and sector) that characterized their
practice in advocating for their special needs children. In their leadership
development path, it became clear to them that they need to take action to
reach key decision makers, service planners and service providers in the sector
– where parents’ voice needs to be heard.
Participants selected themes to be integrated
into a combined Significant Story Trailer to represent their experience and
planned a dissemination pathway, including the use and monitoring of Social
Media channels. The trailer introduces the project (see: http://tinyurl.com/TWKinterviews)
for their voice to be widely shared with the disability sector. Download the Parents' Guide here.
The findings contribute robust evidence for
service delivery and policy development in the Health and Disability sector –
where quantitative measures are traditionally preferred.
This
project followed the SPARK NZ ‘Knowledge Translation’ methodology and was
supported by a Consumer Leadership Development Grant administered by Te Pou.
