Co-Creating a Culturally Responsive Parenting Program for Families of a Disabled Child in Aotearoa New Zealand

Highlights

Public Health Relevance—How does this work relate to a public health issue?

• Whānau (families) of disabled children in Aotearoa New Zealand face compounding health inequities rooted in colonization, including poorer wellbeing outcomes and exclusion from culturally appropriate support.
• This work demonstrates how community-based, culturally responsive program delivery can address social determinants of health for a marginalized population.

Public Health Significance—Why is this work of significance to public health?

• A co-created program grounded in te Ao Māori supported whānau of disabled children across diverse cultural backgrounds to feel connected and access tools for wellbeing.
• The model challenges universalist assumptions embedded in imported parenting programs and offers a framework for decolonial, equity-centered health program design.

Public Health Implications—What are the key implications for practitioners, policy makers, and/or researchers?

• Funders and health agencies should provide flexible, relationship-centered funding to enable Indigenous co-creation approaches that are not rushed in order to meet conventional output timelines.
• Community health programs serving Indigenous and disabled populations should center lived experience, flatten power dynamics, and embed cultural values as foundational rather than supplementary components.

Abstract

Parenting programs in Aotearoa New Zealand are typically designed by and for non-Indigenous parents of non-disabled children, yet are routinely promoted to all families, including Māori (the Indigenous people of Aotearoa) and families of disabled children, despite limited cultural relevance. This paper describes and discusses the co-creation of a culturally responsive program for whānau (families) of a disabled child, undertaken over three years using a participatory, culturally informed approach. Drawing on key practices from te Ao Māori (the Māori worldview)—including whakawhanaungatanga (relationship building), tuakana-teina (peer-to-peer support), and koha atu koha mai (reciprocity)—the team developed and iteratively tested a wānanga-style program across three stages of development (foundation building, program drafting, and program testing). Evaluation data was collected from participants (n = 16), facilitators (n = 3), and authors, using anonymous online surveys (participants, facilitators), in-person discussion (facilitators), and reflective observation (authors). Data analysis was pragmatic and participatory in design, prioritizing collective sense-making. Findings indicate that whānau highly valued dedicated time for wellbeing reflection, culturally grounded content (particularly the Whiti Te Rā wellbeing model), peer connection, and practical supports such as on-site childcare. The paper reflects on the intentionality required for working together, including the need to center Māori knowledge, flatten power dynamics, and slow down program development to prioritize relationship over output. This work contributes to community psychology and public health scholarship as an example of decolonial, anti-racist practice in community health program design. This paper offers a template for how culturally responsive, co-created program design and delivery can work in practice.

1. Introduction

The signing of Te Tiriti o Waitangi (te Tiriti) in 1840 by both the Crown and Māori (the Indigenous people of Aotearoa New Zealand) indicated a commitment to each other and an intent to work together. This intent of te Tiriti has not been honored [1]. When it comes to health and disability, the ensuing and ongoing practices of colonization resulted in poorer health outcomes for Māori [1,2], and even more so for Māori disabled people [3,4]. Disability approaches by Crown-based agencies and their partners have been, and continue to be, focused on the needs of the disabled individual [5,6], including for disabled children (in accordance with the New Zealand Disability Strategy, and as preferred by disabled people, we use the term ‘disabled child’) [7]. While recent changes to the Disability Support System (DSS) now include carer wellbeing in the needs assessment (according to the Disability Support Services via their website, https://www.disabilitysupport.govt.nz/disabled-people/improving-assessments-allocations-flexible-funding/assessments-and-allocations (accessed on 31 August 2026)), the questions remain focused on the primary caregiver and exclude Māori concepts of whānau (kin and/or friendship groups) when it comes to care. This exclusion perpetuates the ongoing disregard of Māori approaches to disability, including that of whānau-based support [6,8]. This has implications for the wellbeing of whānau Māori involved in the care of their tamariki whaikaha (disabled children) [9].

Prior to the influx of settlers and imposition of associated colonial systems post-signing of the te Tiriti, the raising of children was a collective endeavor that occurred within whānau, hapū, and iwi structures. Care for others, including children, elderly, or disabled persons was a shared responsibility, underpinned by tikanga and intergenerational knowledge transmission [10,11]. The practices of colonization disrupted these structures through land confiscation, the fracturing of whānau networks, and active suppression of te reo Māori [12,13]. The imposition of nuclear family norms displaced whānau-based models of care [1]. Against this backdrop, there was a growing recognition, both nationally and internationally, that the family environment acts as a primary determinant of child health and developmental outcomes [14,15]. Research on the topic of early intervention highlighted that equipping parents with knowledge, skills, and peer support buffets the child against a range of adverse outcomes [16].

In Aotearoa NZ, this shift in attitudes saw a range of parenting programs imported, developed, and offered [17,18]. A majority of these were (and remain) provided by social service organizations. The focus is predominantly imparting information on being a ‘better’ parent, whether to a recalcitrant teenager or a toddler, offering both generic and tailored advice [19]. The target audience was often Māori, despite such programs typically developed by and for non-Indigenous parents and/or caregivers. Additionally, proffered parent programs rarely included disability perspectives, with most unsuitable for addressing disability-related parenting challenges. Robertson [19] characterized disability as a risk factor for abuse, in part because the disabled child was “more difficult to parent” (p. 18). This dehumanizing statement starkly contrasts with parent perspectives captured work by the Good Start in Life project [20], which noted that a focus on risk was unhelpful in creating the types of support necessary for parents of a disabled child. Instead, the authors recommended a co-design approach to better understand the lives of parents and their disabled children and develop ideas that could address the issues that most affect them [20].

There are currently two disability-specific programs for parents of a disabled child available in Aotearoa NZ: Now and Next (developed by Plumtree, Australia) and Stepping Stones (developed by Triple P, England). Both were co-designed with parents in their country of origin, with the aim of developing and building parent capacity. While evidence-based, with useful and helpful material, they were designed for and by non-Indigenous parents within epistemological frameworks that center individualistic, Western understandings of child development and family functioning. Neither was co-created with Māori whānau, nor grounded in te Ao Māori. Yet, both programs are promoted to organizations in Aotearoa NZ as being relevant for all parents, despite their limited application for Indigenous whānau. In this way, such programs risk reproducing the dynamics of colonization: positioning professional knowledge as authoritative [21], centering nuclear family norms [22], and rendering invisible collective, relational models of care intrinsic to Māori wellbeing [23].

This paper documents and discusses both the process of undertaking the creation of a culturally responsive parenting program for parents of a disabled child in Aotearoa NZ, and the evaluation data following the initial delivery. First, we describe the three-year co-creation process across our stages of program development; we then present our early-stage, qualitative evaluation findings from the program delivery; and we close by reflecting on what this process suggests for Indigenous, disability, and program design more broadly.

2. Our Approach

This section provides a theoretical base for co-creation and describes the process of implementation, including detailing our iterative model of collaboration.

2.1. Theoretical Basis for Co-Creation

We took a culturally informed co-creation approach. From the outset, the program was grounded in te Ao Māori (a Māori worldview), and this guided both development and delivery. Te Ao Māori is the epistemological foundation from which the program was built [10,11,12,13]. Core to this are the values and practices of whanaungatanga (relational connection), manaakitanga (care and respect for the dignity of others), and kaitiakitanga (stewardship of knowledge and kaupapa) [11,24]. These values were actively practiced across all stages of development and enabled the authorship team to develop a partnership that brought together Māori, disability, and Pākehā understandings in a cohesive and responsive manner. This partnership generated new knowledge (co-creation). Knowledge co-creation involves the provision of information alongside collaborative exchanges [25,26].

The use of co-creation within a disability context aligns with the United Nations Sustainable Development Goals [27] and public values such as citizenship, social justice, and wellbeing [25]. Co-creation is particularly valuable when working with marginalized, disadvantaged, or at-risk populations, such as disabled children and their families [28]. The benefits of co-creation within the context of children and families include an increased sense of empowerment and confidence [27], development of more appropriate interventions [29], generation of novel and conceptually rich knowledge [30], and the acquisition of new skills [28]. Nevertheless, disabled persons and whānau in Aotearoa NZ are often omitted from program development and co-creation activities due to the inability of program developers to engage in the extensive and thoughtful preparation required [31]. Meaningfully addressing this exclusion requires intentionality of recruitment, offering repeated engagements, and securing adequate funding to provide practical mechanisms for overcoming barriers [32]. The latter in particular requires adequate provisions for communication, transportation, and reasonable accommodations made where needed [33].

Co-creation differs in crucial ways from co-design. A particular challenge with co-design is that facilitators do not always consider how meaningful engagement will be achieved [34]; may not adequately address power differentials when working with marginalized populations [35]; can struggle with the need for flexibility and responsiveness [36]; and may prioritize predetermined timelines and outcomes [32]. In Aotearoa NZ, co-design processes co-opted by Crown agencies within the context of disability service provision have faced similar challenges. In such instances, participants are positioned as informants to the process rather than as active partners with equitable decision-making power [26]. Subsequently, the ownership of programs developed, associated development, and implementation remains solely in Crown control. This work operates from the principles of community psychology [37], which emphasizes ecological perspectives, second-order systemic change, and the active participation of community members in research and intervention processes.

2.2. Program Development

The development of our program occurred across three years in three stages. We have framed these as Tranches: foundation building, program drafting and development, and program testing and finalizing. On reflection, these followed the 4-step co-creation method described by Bergerød et al. [38], with steps 1 and 2 integrated into Tranche 1. Evaluations were undertaken after each iteration of the program. A summary of this process is presented in Figure 1.

2.2.1. Tranche 1: Foundation Building

This stage established the working relationship as a team and determined our collectively shared values. We undertook intentional conversations with a range of whānau members including parents, grandparents, and aunties regarding their perspectives on parenting programs for parents and whānau of a disabled child. This process took approximately twelve months and occurred in addition to the team’s regular work schedules and commitments. In determining our underlying values and approach we drew from both te Ao Māori (the Māori worldview) and te Ao Pākehā (European worldview). Values from our respective areas of professional expertise also provided guidance, including values and practices from the disciplines of Community Psychology [37], Participatory Research [39], and Kaupapa Māori Research and Evaluation [40,41]. At the end of this process, we collectively agreed to nine mātāpono (practiced values). These are pictorially depicted in Figure 2, with definitions provided in Appendix A.

It is important to emphasize the time that this process takes. The Pākehā members of the team (T.B., R.G.) began the project and found the iterative, unstructured, and generative nature of this process difficult and frustrating. Notes from this time capture this frustration: “Is there an end in sight? Are we going to do this?” However, alongside M.R.C. and L.W., the team was able to take the time to build a collaborative working relationship and establish values. When reflecting together at the end, it was clear that taking time to deeply reflect in a regular and intentional way, particularly at the beginning of the project, built the foundation necessary for collective contribution across the course of the project.

We sought to work alongside whānau to offer a wānanga-style values-based parent program that recognized and strengthened the mana (dignity and value) and pūkenga (skills and talents) of whānau. Ensuring whānau who are raising tamariki whaikaha have access to networks, supports, and information ‘by whānau for whānau’ is critical. This meant ensuring that we provided opportunities for mana āki (strength and pride) through creating suitable spaces for multiple perspectives; whanaungatanga by consistently building time to create connections to people and place; koha atu, koha mai (giving and receiving) through ensuring there was opportunity to make contributions; and auahatanga (innovation) by leaning into our creativity to reimagine. These values and opportunities are reflected in the following whakatauki (saying): Raranga te whāriki mātāpono mō ngā whetū o te rangi (Weaving our values and practices that are important to us).

A wānanga is a place and a way to meet and discuss, deliberate, or consider. Culturally embedded, wānanga creates a space for responsive and relational pedagogical approaches that embrace the whole person [42]. Through wānanga, whānau connect with each other and engage in learning and related conversations. This process of sharing and reflecting on new and current understandings leads to decision-making for future success and the creation of new knowledge [43]. Decisions and pathways are determined through collective participation and engagement, with both heart (emotion) and head (mind) engaged. A wānanga-style program aligns with our intent to co-create knowledge together. During wānanga, facilitators understand that knowledge is already present in the room, held by whānau through their lived experience, and the role of the facilitator is to create conditions for this knowledge to be surfaced, shared, and built on together. Program sessions were structured around discussions, activities, and shared reflections, rather than didactic instruction. Facilitators held the space and followed the interests of the group while maintaining the programs underlying kaupapa.

We purposefully centered whānau and their oho mauri (awakened vitality) as a generative strength for the program. The core practices to support whānau wellbeing are whakawhanaungatanga (relationship building), tuakana-teina (peer-to-peer support), and koha atu koha mai (reciprocity). There is a continuum of growth required for building confidence in self, and courage to see oneself as an expert; to question and lead conversations; and to build and enhance skills and capabilities over time—in areas of importance (e.g., communication and play strategies) and at critical points (e.g., at the time of diagnosis; transitioning to school).

2.2.2. Tranche 2: Program Drafting and Development

In this stage the authors drafted three sessions of a parent program based on our core values and conversations held during Tranche 1. Each program session incorporated a core practice, a model of wellbeing, and activities known for being useful for families with disabled children and/or for developing understanding of self and family.

For our first program delivery we invited a group of key informant parents with lived experience in parenting a disabled child or young person to attend a full-day session. Parents were male (n = 4) and female (n = 4), Māori (n = 2), Pasifica (n = 2), and NZ European (n = 4). This small group size was suitable for the space available and the style of program presentation. Over the course of one day (10:00 am to 3:00 pm) we presented each session and invited open and honest feedback, both in person on the day and via an anonymized online survey over the following week. Feedback from this group indicated that the provision of childcare by known persons in a familiar environment was a key component for both parents to be able to attend together. Parents valued having the time and space to think about their wellbeing as parents, and having additional tools to articulate this to themselves, their partners, and to each other. Specific feedback included: “Remembering the things that mattered before”; “Having a dedicated time and incentive to reflect on what is important to me/us and gaining tools to help align life with our values”; and “The open, honest & safe space & communication among the participants & facilitators”.

Some parents attended who were unfamiliar with Māori language and concepts. We had included these without providing adequate English translations or allowing time to conceptualize this new knowledge, which resulted in components of the program being confusing and inaccessible. Feedback included: “English translations for the Māori vocabulary for those of us less familiar with the terms, it can take some time to sink in” and “Some hesitation for confidence in te reo Māori but overall relevant and very important in NZ.” These responses were invaluable in refining the program and ensuring the concepts and ideas were accessible to all who attended.

2.2.3. Tranche 3: Program Testing

During this stage we reviewed and refined the program based on feedback from parent SMEs, facilitators, and our own reflections. A key response from previous Tranche feedback was the need to slow down the facilitation, reduce the material included, and simplify the program. Subsequently, in Tranche 3, we expanded the time for each session and reduced the material included to allow sufficient time for parent discussion and interaction. We were also curious to explore how the program would be received when delivered in other contexts, so included delivery as part of a parent wānanga to parents who were unfamiliar with the material. Subsequently, the program was presented to two different groups in two different ways: 3 two-hour sessions delivered fortnightly and 1 session delivered across 1 day. For the former, attendees (n = 8) were all parents of a disabled child under the age of six years, and included Māori (n = 2), NZ-European (n = 2) and recent European immigrants (n = 4). There was an even gender split. For the latter, attendees (n = 8) were all parents of a disabled child or young person under the age of 18 years, and were Māori (n = 4), Pasifika (n = 2), and NZ European (n = 2). There was an even gender split.

Table 1. List of Tranche 3 Evaluation Participants.

Session	No. of Attendees	No. of Survey Responses	Ethnicity	Relationship
3 sessions conducted fortnightly over 6 weeks	8 (4 couples)	5	Māori (2) NZ European (2) European (4)	All parents to a disabled child under the age of 6 years
1 session conducted during a one-day wānanga	8 (4 couples)	4	Māori (4) Pasifika (2) European(2)	All parents to a disabled child under the age of 18 years

lists the sessions and demographic information fo the evaluation participants. Feedback was collected from participants after each session. We were particularly interested to hear how newly arrived European immigrants experienced the sessions and grounding in te Ao Māori. These participants commented on how easily they were able to grasp the te Ao Māori concepts presented, made clear links with their own cultural backgrounds, and found the values and ideas relevant to their prior experiences.

2.3. Evaluation Methods

After each Tranche 3 delivery was completed, all attending parents and facilitators were invited to complete an anonymized online survey. Survey responses were obtained from 9 of the 16 parents and all three facilitators, with participants completing the survey following delivery of the session they attended. The two surveys differed somewhat in design to reflect the different contexts of each delivery. For the six-week fortnightly delivery, the survey used open-ended reflective questions covering: application of learning between sessions; barriers to trying new things; the value of attending with a partner or whānau member; key learnings from each session; and suggestions for future delivery. For the noho-based wānanga, the survey was structured around the seven Pou of the Whānau Ora framework [44], using rated statements and open comment fields to assess how the wānanga upheld whānau self-determination, healthy lifestyles, societal participation, connection to te Ao Māori, economic security, whānau cohesion, and environmental stewardship. Both surveys also invited open-ended responses regarding anything participants wanted to share that had not been specifically asked.

The analytical process proceeded in four stages. First, the data sources (survey responses, facilitator reflections, reflexive notes) were independently read by all authors prior to any collective discussion. This independent reading stage was important for surfacing individual perspectives and reducing the risk that any single author’s reading would dominate the analysis. Second, authors noted initial observations, patterns, and points of interest across the data, with particular attention to recurring ideas, areas of convergence across data sources, and tensions or contradictions. Third, the team met collectively to share and discuss these observations. This discussion was structured around three orienting questions: What are whānau telling us about what worked and why? What are facilitators telling us about the experience of delivery? What are we, as a team, noticing that participants may not have named explicitly? Lastly, through iterative discussion and refinement, the following themes were determined by consensus: practical supports, socio-cultural engagement, program content, core elements, and future directions.

As both program developers and evaluators, the authors held dual roles. This holds an inherent risk of confirmation bias and a tendency to notice and privilege data that affirms our own value for the program. We addressed this by prioritizing critical and constructive feedback in our reading and discussion, by ensuring we explicitly sought out data that challenged our assumptions, and by using the Indigenous interrogation lens described by Wehipeihana [41] to examine whose knowledge and voice was most visible in our interpretations. We also returned to the raw data during writing to verify that the themes and illustrative quotes were representative of the dataset as a whole rather than selectively chosen. Member checking with participants was not undertaken as a formal step given the evaluative context, small and known participant numbers, and need to retain anonymity of provided data.

2.4. Evaluation Ethics

The evaluation component of this work did not meet the threshold for formal ethical review by HDEC (Health and Disability Ethics Committees). In Aotearoa NZ, HDEC review is required for research involving human participants that meets specific criteria, including studies that are interventional in nature, involve vulnerable populations in ways that carry more than minimal risk, or are conducted with the primary purpose of generating generalizable knowledge. Program evaluation where the primary purpose is to assess and improve a specific program for those delivering and receiving it does not meet these criteria and falls outside HDEC jurisdiction. This position is consistent with HDEC’s own published guidance on the distinction between research and evaluation.

In place of formal HDEC review, we sought and obtained approval from the organizations involved in the program development and delivery. Community-level endorsement was embedded in the co-creation process itself: whānau and facilitators with lived experience of disability were active partners in the program development across all three tranches, rather than subjects recruited at the point of evaluation. Informed consent was sought from all participants prior to any data collection. This was done both verbally and in writing at the outset of each Tranche 3 delivery. Participants were clearly informed of the purpose of the evaluation; that their feedback would be used to refine the program, that all data would be anonymized prior to reporting; that participation and provision of feedback was entirely voluntary and separate to participation in the program, and that declining to provide feedback would have no bearing on their experience of or access to the program.

Confidentiality was actively protected throughout. Given the small sample sizes and the close-knit nature of disability and whānau networks in the Waikato region, we were alert to the risk of participant identifiability even within anonymized data. Feedback collected via anonymous online survey removed identifying metadata. Where feedback was provided in person, notes taken were de-identified. Quotes included in this paper were reviewed by the authors to assess potential identifiability before inclusion; any quote that could reasonably identify an individual within a small community network was paraphrased or omitted. No demographic data linking participants to specific quotes has been reported.

Throughout all phases we operated from an ethical standpoint grounded in Te Ara Tika (Te Ara Tika is an ethical framework for researchers engaging with Māori: Hudson et al. (2010). Te Ara Tika: Guidelines for Māori research ethics. Health Research Council [45]), an ethical framework developed specifically for research and evaluation engaging with Māori. The four principles of Te Ara Tika-tika (doing what is right), manaakitanga (care and respect for the dignity of participants), whakapapa (honoring relationships and obligations), and mana (protecting the standing and authority of participants)—guided our approach to consent, confidentiality, and reporting. We also upheld the standards for evaluators as outlined by ANZEA (ANZEA (Aotearoa New Zealand Evaluation Association) evaluation standards: ANZEA & SUPERU (2015). Evaluation standards for Aotearoa New Zealand [46]), which provides specific guidance on ethical evaluation practice in Aotearoa NZ, including the responsibilities of evaluators working with Māori and Pasifika communities.

2.5. Positionality

Across our team we have extensive lived experience of parenting and caring for tamariki whaikaha (disabled children) and of working in allyship with and as whānau. The team is Pākehā (NZ European) (R.G., T.B.) and Māori (L.W., M.R.C.). We are registered professionals in our respective fields: psychology (R.G.), evaluation (L.W.), social work (M.R.C.), and occupational therapy (T.B.). Our respective roles as program developers and evaluators, and our positionality as Māori and Pākehā practitioners embedded in the disability community, inevitably shaped our interpretations. This is a tension we have sought to address through the reflexive practices described in Section 3.6.

2.6. Limitations

We acknowledge the limitations associated with small sample sizes, and that generalizability may be impacted with limited applicability to other contexts. All authors held dual roles, creating the conditions for bias in the interpretation of findings. We have sought to mitigate this through reflexive practice and transparent reporting of participant feedback, including critical responses. The nature of the study, and our approach, means that participant narratives rather than direct outcome measures were prioritized and there is limited follow-up data regarding the sustained impact of the program on whānau wellbeing beyond the program period. The findings are therefore most accurately characterized as reflecting program acceptability and participant experience. Future research should employ longitudinal follow-up and validated measures of whānau wellbeing to build an evidence base for the program’s longer-term impact.

3. Results/Findings

Here we present our evaluative findings as five themes: practical supports, socio-cultural engagement, program content, core elements, and future directions. In presenting the material, we have included anonymized quotes that exemplify key points.

3.1. Practical Supports

Hosting in-person events at a known, comfortable location; inviting parents directly; answering questions ahead of time; providing childcare onsite; and offering the program at no cost and at a time that suited parents reduced attendance barriers and enabled couples to attend together. Ensuring children were cared for in familiar surroundings and close to parents was a critical factor in enabling attendance: “Child minding made it possible” and “I knew my boy would be playing at a place he knew and felt comfortable at.” The time that suited parents was Saturday morning from 10:00 am to 12:00 pm, fortnightly over six weeks. Having dedicated time to attend the program in a relaxed setting was also highly valued: “I love the almost ‘selfish’ time we get in the workshops, it is hard to find that ‘self’ time back in real life.” The provision of printed workbooks alongside items such as tote bags, gifts of rongoā Māori (traditional herbal remedies), and tactile fiddle toys supported post-workshop reflection.

3.2. Socio-Cultural Engagement

Spending sufficient time engaging in whanaungatanga at the start of the program was essential. Whakawhanaungatanga goes beyond basic introductions; in this context whānau shared their story and journey into the disability sector at the beginning of the program. This takes longer than basic introductions, and enough time must be allowed in the first session for this sharing process. Explicitly building in relational values meant that over the course of the program, whānau took time to connect and check in with each other before, during, and in-between sessions. One parent shared that they do not generally enjoy or participate in group activities but found this group setting valuable and important. Another noted: “It’s good to know we are not alone and also being respected and being in a space that gets it was amazing.” Intentionally building in time to create relational connections at the start of the session created the foundation for this type of successful participation. Having a cohort of fathers attend both offerings provided natural support and promoted their natural inclusion. One father commented that the hands-on activities felt more natural than “sitting around talking.”

The facilitation team intentionally created the psychological space necessary for open reflection and learning by drawing on the practices of wānanga. This included building in time to reflect, discuss, and share experiences; building an understanding of what is important for each whānau; and honestly sharing their own experiences. These components were foundational to ensure parents felt they could share openly:

“I enjoy doing and participating in various activities. It’s quite involved which is nice, we’re not just being fed info and trying to retain it. The activities help to reinforce the concepts and frameworks.”

“We valued the open, honest and safe space and communication among the participants and facilitators.”

“It was a safe comfortable space with so much wairua amongst us whānau.”

Facilitators noted that “whānau felt confident to share their struggles, wins and insights with each other. They seemed engaged in the content and had an understanding of the overall focus.”

3.3. Program Content

Whānau valued having the time and opportunity to explore relevant concepts and ideas in hands-on activities. Whiti Te Rā was highlighted as a concept that resonated greatly. Whiti Te Rā is a model of wellbeing developed by Māori psychologists to support active engagement with Māori pathways to wellbeing [47]. The model was quickly grasped. The concept of hīhī (rays of the sun which corresponded to different components of wellbeing) as wellbeing was valued by Māori and non-Māori alike:

“The idea of the hīhī really resonated with me, and I find myself thinking about strengthening my various sunrays and nourishing that inner spark every day since.”

“It’s made me more aware of my hīhī and that I need to help some parts shine more.”

Parents valued having time to think about, recognize, and nourish their strengths. The concept of tuakana-teina offered parents the opportunity to expand their understandings about their strengths and talents and how these can be offered in return across a range of settings: “The concept of tuakana-teina and how there is learning, sharing of knowledge and connection in all walks of life.” Parents of older children valued being able to share their knowledge with new parents: “It’s so nice to know we are not alone but also be able to become a support network for other whaanau on the same journey.”

A challenge for whānau, both during and after participation, was finding time to nurture their sense of self and practice new learnings. Attendees noted it was difficult to find time “outside workshops to reflect” and “time to focus on me.” Offering the program over six weeks (fortnightly) or as a noho-based wānanga provided practical and achievable ways to respond to this challenge.

3.4. Core Elements

Participants commented on two core elements they found particularly valuable. These were elevating Māori knowledge and strengthening opportunities for whakawhanaungatanga. Elevating Māori knowledge referred to the explicit introduction and use of te Ao Māori and the incorporation of te reo Māori throughout. Changes were incorporated into Tranche 3 to ensure that concepts drawn on were more fully explained, and that the meaning of words and concepts from te reo Māori had English descriptions alongside, with time taken to build links from Pākehā understandings to te Ao Māori where needed. Feedback from participants indicated that this approach made ideas and concepts accessible: “I really think this would be an amazing space for whānau to come to and just learn and feel confident to open up in.” Facilitators commented on creating additional spaces for whakawhanaungatanga. Their reflections were that there would have been value in guiding parents to share the knowledge they gained in their own words at the start of each session. This would have connected incoming parents with others at that juncture, affirmed the knowledge already learnt, and brought all on a journey of learning. The key takeaway here was that there is value in creating space for whakawhanaungatanga at every session.

3.5. Future Directions

Participants expressed a desire to remain connected post-program. Suggestions included online communities and playgroup cohorts. Comments noted the value of a future-focused space to solidify their learning and “cement why we are doing these things.” Parents appreciated the idea of additional sessions after the program ended as a way to “come back, top up and refresh.” Other future directions suggested by participants were sessions focused on the vision and principles of Enabling Good Lives (Enabling Good Lives is a community-led social movement and reform framework in Aotearoa NZ that transforms disability support by giving disabled people and their families real choice, flexible individual funding, and control over their lives, aiming for ordinary, self-determined everyday lives; see https://www.enablinggoodlives.co.nz/ (accessed on 31 August 2026) for more), engaging with wider disability sector services and supports, and ways to enable a good life.

The responsiveness of each delivery to the people attending is both a strength and a complexity of the wānanga-style approach. No two deliveries were identical: the six-week fortnightly format allowed relationships to deepen incrementally between sessions, with whānau arriving to subsequent sessions having reflected on earlier content and ready to share how concepts had landed in their daily lives. The single-day wānanga created connection and immersion that produced relational depth, with the shared kai, environment, and uninterrupted time together generating a different but equally valuable experience. Both formats had merit, and both were described by participants as worthwhile. The six-week format appeared better suited to whānau who benefited from processing time between sessions and for whom childcare and scheduling across multiple dates was manageable. The noho-based format was particularly well-suited to whānau Māori for whom the wānanga context was culturally familiar and who valued the immersive, whole-whānau experience it offered. Future iterations of the program would benefit from offering both formats, with the choice made collaboratively with whānau based on their preferences and circumstances. In either format, the skill and cultural competence of the facilitators was identified as foundational—not incidental—to the program’s effectiveness. The ability to hold a relational space, navigate vulnerability, and respond in the moment to what whānau brought required specific capability that should be explicitly recognized and resourced in any future delivery model.

3.6. Authors’ Reflections

Central to our process was the intentional creation of a reflexive dialogical space [48]. This is a structured yet relational environment within which the authors could surface assumptions, challenge each other’s thinking, and collectively interrogate the cultural and professional lenses we each held. In practice, this took several forms. We met regularly outside of formal program development tasks to reflect on what was working, what felt uncomfortable, and where our respective worldviews were in tension or alignment. These conversations were guided by Indigenous interrogation questions [41] that prompted us to examine whose knowledge was being centered, whose voices were being amplified, and whether our practice was genuinely honoring the kaupapa we had collectively agreed to. We used written reflective notes to document our thinking; over time, patterns and shifts in our understanding were noticeable.

The process of consensus-making generated reflexivity, supported learning, and contributed to creative insights and participatory approaches. However, this is not necessarily a comfortable or ‘easy’ process. There were moments of uncertainty, disagreement, and discomfort. For R.G. and T.B., a core learning across the three years was the need to slow down and build relationships first before undertaking the ‘doing.’ This learning led to a deeper understanding of what it means to do ‘with’ not ‘for.’ For M.R.C. and L.W., this process showcased the need for ongoing guidance to keep the team anchored in te Ao Māori and not assume that everyone held the same understanding. For the authors, intentionality and a willingness to de-centre oneself and to interrogate assumptions and practices was needed. Over time, this reflexive practice built the relational trust and shared understanding that made genuine co-creation possible. It also served a protective function: by continuously examining our assumptions and motivations, we reduced the risk of cultural appropriation and ensured that Māori knowledge and concepts were engaged with respectfully and in context, rather than extracted and applied in ways divorced from their meaning.

It was encouraging to observe parents from a range of cultural backgrounds understand concepts grounded within te Ao Māori and actively embrace these ideas as directly relevant for their lives. This actively reflected the idea that ‘what is good for Māori is good for all’ [49]. As T.B. notes, “active participation and empowerment for whānau are necessary so they are more in control and engaged, and this leads to better outcomes for everyone.” We openly share our approach so others can draw from it at no financial cost to themselves (or financial benefit to ourselves). There was no fee to attend and no charge to access it. Nonetheless, a kaitiakitanga (stewardship) responsibility comes with this kaupapa. That is, those who accept our offering do so reflective of the mātāpono that ground it and seek to elevate whānau as experts of their lives.

4. Discussion

This paper addresses a gap in the area of cultural- and disability-specific parenting programs in Aotearoa NZ. Our findings indicate that grounding program development and delivery in te Ao Māori produces meaningful and positive experiences for a diverse range of whānau, including non-Māori and immigrant families. This suggests value in such an approach that extends beyond ‘filling a gap’ for Māori specifically, and offers a template for producing culturally responsive, co-created programs for all. The implications are relevant for any country with a history of colonization where universalism in community programs remains a challenge [22,23]. The principles operationalized here—sustained relationship-building before program development and delivery, shared values as a foundation, flattened power dynamics, and centering Indigenous knowledge as a strength—offer transferable guidance for program design internationally.

This work extends community psychology scholarship in several ways. Community psychology emphasizes that meaningful change requires more than individual-level intervention; rather, change requires attention to the ecological contexts that shape people’s lives [37]. Rather than delivering an existing program into a community, we built the program from within the community, centering whānau knowledge and experience. In doing so, we moved beyond first-order change (modifying how an existing program is delivered) toward second-order change (fundamentally reconceiving what a program for whānau of a disabled child in Aotearoa NZ could look like). Second-order change requires a willingness to relinquish the expert role, sit with uncertainty, and allow the direction of the work to be shaped by those it is intended to serve. Our process required this and our findings affirm that this matters.

The process of developing this program also enacts Rappaport’s [50] conception of empowerment as not something done to or for communities, but as a process through which communities develop the capacity to define and act on their own terms. Whānau who attended did not receive packets of pamphlets and information about wellbeing and services. Rather, they were invited to recognize and articulate the knowledge they already held, to name their own strengths, and to build connections with others navigating similar terrain. The tuakana-teina structure provided a framework for experienced whānau to be knowledge holders and supporters rather than passive recipients, disrupting the conventional power dynamic of professional-led parenting programs. This is empowerment in Rappaport’s sense; located in the community, generative rather than prescriptive, and inseparable from the relational context within which it occurs.

Prilleltensky’s [51] concept of care further clarifies what made our approach distinctive. Prilleltensky argues that wellness at individual, relational, and collective levels requires that people experience both care from others and the opportunity to care for others. The delivery approach embodied this in practice: a space where whānau were cared for through practical supports, cultural affirmation, and dedicated time for their own wellbeing, while simultaneously being invited to contribute their knowledge and experience for the benefit of others. The reciprocity embedded in koha atu koha mai is more than just a cultural value. It is, in Prilleltensky’s terms, a mechanism for multilevel wellness. Our practice of co-creating the program with whānau decolonized its foundations, producing what the Special Issue literature describes as a counterspace of empowerment: a community health setting where Māori knowledge, relationships, and values are centered instead of marginalized, and where the conditions for genuine wellbeing, at individual, relational, and collective levels, were structurally built in.

Co-creation has a longer timescale when compared to traditional stakeholder consultative approaches, leading to critiques of cost and/or time effectiveness [28]. Our approach took three years from initial conversations to the production of a tested model. The time taken is a necessary component, as it allowed for adequate reflection, discussion, and consideration across all phases. Learning from our testing phase in Tranche 2, we implemented a ‘slower’ delivery for sessions in Tranche 3. This resulted in improved flow for the sessions and allowed time for participants to ‘digest’ the content. Taking the time needed for this style of work in the current socioeconomic climate is difficult. The drive to economically produce a sellable product reflects current neoliberal notions of productivity. However, this drive toward economic efficiency and measurable output is fundamentally at odds with the relational, iterative work required to produce something genuinely useful for whānau. It also renders invisible the work that makes community-based programs effective: the building of trust, the centering of relationships, and the slow, careful process of ensuring that what is produced genuinely reflects the communities it is intended to serve.

Our experience points to two core practicalities that enabled us to undertake this work in the style needed. Firstly, the philanthropic seed funding from J.R. McKenzie Trust. This funding was flexible and enabled the team to take the time required rather than being driven by government deadlines for outcome reporting. Secondly, all authors were employed full-time by their respective employers with flexible work arrangements, allowing them to incorporate work on the project into their regular schedule. Where funders focus on outcomes achieved within preset funding periods, set the work direction/agenda, and/or require detailed output-focused reporting, organizations are left with minimal opportunities to explore co-creation work. This is despite co-creation methods resulting in meaningful engagement, positive associations with wellbeing [52], and beneficial material benefit [53], all of which mitigate known barriers to whānau inclusion. For parents and families who are already navigating systemic barriers to participation, having inclusive and accessible spaces matters. When programs are developed without adequate time or resources for co-creation, they can end up excluding the very people they seek to serve.

Existing power dynamics in health and disability are difficult to shift [54]. When caring for a disabled child, parents typically interact with an array of clinicians and professionals who regulate behavior and determine how engagements with services occur. Parent spaces in the disability sector can unintentionally replicate these dynamics through centering Pākehā cultural values and by framing professional knowledge as authoritative. This replication of intra-group power dynamics [55] actively works against the creation of the solidarities needed for systemic change [56]. Shifting power dynamics within shared spaces is not incidental to the work, it is central to the work. Our experience is that undertaking this work requires intentionality. For those whose positionality aligns with existing structures of power, it requires a willingness to de-center oneself, to hold uncertainty, and to follow rather than lead. Having a collectively agreed and clearly articulated set of values, such as those described in our mātāpono, provides a practical mechanism for staying accountable across all stages of the project, including when the work was uncomfortable or slow. Whānau feedback across both deliveries suggests this accountability was felt: participants described the program environment as safe, respectful, and genuinely inclusive. These qualities do not emerge by accident but were the direct product of our approach.

Working in a culturally responsive way requires a nuance that extends well beyond the inclusion of language. Our experience across Tranche 2 and 3 was that incorporating Māori language and concepts without also providing adequate context created barriers to access. We took this finding seriously in refining the program between tranches. Genuinely responsive delivery requires that ideas, values, and concepts are embedded within a grounded cultural context, with sufficient time and relational safety for participants to make meaning of new knowledge in their own terms. As we described, when we did provide adequate contextualizing of concepts, where participants arrived with no prior knowledge of te reo Māori they found immediate resonance with Māori concepts at a deeper level—recognizing in them values and ways of being that aligned with their own worldviews, whether Pasifika, immigrant, or Pākehā. This suggests that accessibility of te reo Māori in program delivery is not primarily a linguistic challenge but a relational and pedagogical one, and that the depth of cultural knowledge held by facilitators is foundational to navigating it safely and respectfully [41].

Taken together, our findings suggest that the development of culturally grounded, co-created programs for whānau of disabled children requires more than cultural adaptation of existing work. Rather, it requires a fundamental reconception of who programs are for, who holds knowledge, and what conditions make genuine participation possible. This paper offers both a documented process and a set of transferable principles for others seeking to undertake similar work in Aotearoa NZ and beyond.

5. Conclusions

The co-creation of a culturally responsive program for whānau of a disabled child in Aotearoa NZ required intentionality, time, and a commitment to relationship before output. Centering te Ao Māori, elevating Indigenous knowledge, and flattening power dynamics produced a wānanga-style program that was experienced by participants as meaningful, accessible, and conducive to wellbeing. The findings suggest that community health programs serving Indigenous and disabled populations need to move beyond universalist assumptions and invest in culturally grounded, participatory approaches to program design. Doing so requires flexible, relationship-centered funding as a foundational condition for development. This paper presents the first documented model of program design and delivery co-created with and for whānau of a disabled child in Aotearoa NZ, directly addressing a gap that existing internationally developed programs have not filled. We openly share this approach so that others may draw on it, with the expectation that they do so in a manner that honors the mātāpono from which it emerged.