Turning waiting time to action: co-designing solutions to support families waiting for appointments in an Australian metropolitan child development service

Abstract

Background

Long wait times for child development services are a widespread issue internationally, hindering timely access to early support. This study reports on a co-design project at a public child development service for children aged 0–16 years in a major Australian city. The study aimed to 1) understand parents’/carers’ and staff perspectives on waiting for an initial child development appointment, and 2) co-design and implement strategies to better support families during this waiting period.

Methods

Guided by a co-design research approach, a convergent mixed methods, multi-phased design was used. In Phase 1, online surveys captured parents’/carers’ experiences of being on the waiting list (n = 450), and parent/carer and staff perspectives (n = 43) on how families could be better supported. Key strategies for supporting families were identified. In Phase 2, a prioritisation survey (n = 54) and focus groups/interviews (n = 5) were used to develop and prioritise strategies with parents/carers. Strategies were reviewed for feasibility and actions aligned with the strategies were implemented within the service in Phase 3.

Results

In Phase 1, participants identified opportunities for families to take steps while waiting for a child development appointment, and reported factors that made this easier or more challenging. Strategies identified from open-ended responses were taken into Phase 2. Phase 2 yielded six prioritised strategies: (1) Provide a summary and action plan for families after phone call, (2) Check in regularly with families while they wait and provide ongoing recommendations, (3) Help families understand ‘the system’, (4) Provide resources and strategies to help families support their child’s development at home, (5) Help families prepare for their first appointment, (6) Support parent mental health and understanding of how they can advocate for their child. Examples of actions implemented in Phase 3 included development of an animated service information video, and updated documentation for families following their intake call.

Conclusions

Combining the lived experience of parents/carers with the expertise of multidisciplinary staff, service leadership, and researchers in a co-design project led to feasible solutions being implemented to better support families while they wait for an initial child development appointment.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-026-14503-4.

Background

Developmental difficulties, encompassing persistent delays or atypical patterns of development that affect cognitive, communication, motor, social-emotional, or adaptive functioning, are increasingly recognised as a significant public health concern in early childhood [1]. Recent evidence indicates rising identification of developmental differences both in the Australian context where this research was conducted and internationally [2–4], contributing to growing demand for specialist assessment and intervention services. There is strong evidence supporting the importance of timely early intervention for children with developmental difficulties and a focus on caregiver capacity-building during the early years of child development is considered best practice (e.g. [5–8]). However, long wait times to access specialist child development services for children who present with complex developmental difficulties are a common problem which impact consumers, professionals and healthcare systems across the world [9–11]. Delays in accessing child development services have become an increasing concern internationally, prompting community attention and investigation [6, 12–15]. For example, a recent study conducted with 673 caregivers of children aged 0–6 years with suspected or diagnosed developmental difficulties across the United Kingdom, found that more than three-quarters reported an unmet need for early support [15]. In Australia, a recent inquiry into delays accessing child development services found that more than 17,000 children were waiting to access allied health services in Western Australia, with median wait times as high as 15.1 months for some services, causing delays to diagnosis and early intervention [13]. Although there is growing awareness of the problem and additional resourcing has been provided in some settings, wait times in many paediatric outpatient and community-based services often exceed clinical benchmarks (e.g. [16]).

Some research has highlighted the risks and burdens associated with long waiting lists in allied health for consumers, professionals and organisations (e.g. [9]). For consumers, waiting can impact physical health, finances, time, emotional wellbeing and relationships, reduce continuity of care and increase intervention needs; for professionals it contributes to stress, burnout and reduced effectiveness; and for systems, there are potential social, ethical and economic burdens [9]. While McGill and colleagues’ findings were based on analysis of stakeholders’ written submissions to an Australian Senate Inquiry [9], and may not fully reflect consumer experiences, their study highlighted the need to better support consumers while waiting and advocated for further exploration and development of innovative system-level strategies to manage waiting lists. Building on this in a further study, McGill & McLeod presented a care pathway and framework to support waiting list management [10]. They advocated for action to explore consumer experience and impact at each stage and collaborative action to address waiting lists. The current study addresses this call.

Previous studies that have investigated the experiences of parents/carers of children waiting for developmental assessment/intervention services have identified key barriers, including insufficient service availability and systemic complexity [15, 17, 18]. Sapiets and colleagues highlighted key barriers for parents/carers when accessing early intervention services for their children, including: service-level challenges; unhelpful professionals; complex service system; and parental/caregiver limitations [15]. Parents in that study also described bureaucratic hurdles and a lack of clear information or guidance that left them feeling isolated and ill-equipped to meet their children’s needs [15]. Financial costs and inequities in eligibility for government funding schemes have also been reported to further compound difficulties in accessing services and results in greater unmet needs [17]. Importantly, these barriers not only limited children’s access to timely intervention but also placed considerable strain on caregiver wellbeing.

In contrast, research has also identified factors that facilitate parents’/carers’ access to early intervention support. For example, Sapiets and colleagues found that the process of navigating developmental services was made easier for parents through supportive and competent professionals, self-empowerment, peer and family support, and accessible services [15]. Maintaining a repertoire of coping strategies has been shown to play a critical role in sustaining parents’ coping and sense of competence while awaiting services [18]. However, research has also highlighted that further supports are required to address unmet needs during wait periods [18, 19]. In a study by Grenier-Martin & Rivard, parents and caregivers were asked about their most desired supports while on the waiting list for formal services, and they prioritised a combination of in-home and online resources, behaviour management training, and peer support from other parents/carers [18]. Despite identification of these desired supports, parents and carers in existing studies to date have not been offered the opportunity to develop the support strategies collaboratively and research activities have included rating and prioritising strategies from a researcher-generated list (e.g. [18]).

Given the significant waiting times families experience when accessing child development services, gaining insight into families’ experiences of waiting and the barriers and facilitators they encounter in accessing support is essential for designing responsive solutions to better support families during this period. Additionally, there is growing recognition of the need to address social determinants of health (SDOH) to improve equity of health services for families in the early years [20, 21]. Although strategies and referrals may be offered while families wait for services, the ability of parents/carers to act on these supports can vary [22]. As a result, the most vulnerable families often experience greater inequities in health outcomes, which are further compounded by long waits for services. In Australia (the context for the current study), other local factors have further exacerbated the issue of waiting for child development services, including structural changes to federal funding systems following the roll out of the National Disability Insurance Scheme (NDIS), and increased pressure for healthcare systems to deliver high-value, effective care while reducing costs [16, 23]. Understanding how families navigate these challenges and identifying what support would be most beneficial for families while waiting for child development services in this contemporary context is crucial for developing effective, context-appropriate interventions that align with best practice in co-designing healthcare services driven by an understanding of families’ needs [24].

The current project aimed to build on previous research and provide a unique contribution to the literature by using a co-design approach that combined expertise from clinicians, managers, researchers and parents/carers in developing collaborative and evidence-informed solutions to support parents/carers waiting for a child development appointment in a public child development service in a major Australian city for children aged 0–16 years with developmental concerns, hereto referred to as the Child Development Program (CDP). The use of co-design is considered best practice in service redesign and represents a shift from a deficit-based, expert-led model which “designs for” families to a focus on “designing with” families [25, 26]. Through co-design, the project aimed to develop and implement strategies to better support families while waiting for a child development appointment. The research question that guided this project was “How can we support families in meaningful and effective ways while they are waiting for appointments with the Child Development Program?”. The objectives of this study were to:

1. Explore how parents/carers currently support their children while on the waiting list (including barriers and enablers to taking steps to support their child while waiting) and what suggestions they have to improve their waiting experience;

2. Explore staff perspectives on the support provided to parents/carers on the waiting list and their suggestions to improve parents’/carers’ waiting experience; and.

3. Co-design strategies with parents/carers to improve the waiting experience in response to data gathered from consumers on the waiting list and staff in the service.

Methods

Study context

This study took place within a publicly-funded metropolitan specialist Child Development Program (CDP) which is a multidisciplinary assessment-focussed service that partners with families and children with complex developmental differences and delays to understand a child’s development, answer family questions, and help them connect with support they need. Families are referred to the service by General Practitioners (GPs) and community allied health providers. The initial intake stage for the service is typically completed within several weeks of referral through an intake phone call with a senior allied health clinician where prioritisation criteria are assessed based on the child’s developmental concerns and family needs. Following the intake call, families are placed on a waiting list for an initial assessment with the local specialist child development team, with priority determined by the severity and complexity of concerns identified during intake. However, increasing service demand has led to extended wait times for this initial assessment appointment within the service. Prior to the commencement of the current study, internal service data indicated that the program received over 3,400 new referrals between August 2023 and July 2024 with an average waiting time of 441 days for families during this same period. These long waiting times (often exceeding 12 months) was identified by the CDP team as a problem requiring action, prompting the initiation of this research project.

Research design

This project is guided by the four stages of co-design proposed by Sanders and Stappers [26] which is a framework that has been used in other projects involving families and health service staff as key stakeholders (e.g. [27]). The current study represents Stages 1 and 2 (i.e., Pre-Design and Generative Stages) of this co-design process, with Stages 3 and 4 (i.e., Evaluative and Post-Design Stages) to be completed with stakeholders in the future. Stages 1 and 2 of co-design were implemented across three phases in the current project – see Fig. 1.

Fig. 1.

Phases of current project

Conducting research with health service consumers rather than about or for them is increasingly recognised as an essential part of generating meaningful and relevant outcomes, with evidence showing that consumer involvement improves the quality, credibility and impact of health research [28, 29]. Therefore, consumer involvement was embedded across the current study, with three parent consumer representatives involved in decision-making about the project at regular meetings, as well as involvement in actual implementation of research activities. These consumer representatives were recruited from the pool of parent/carer participants in Phase 1 of the study, following distribution of an expression of interest flyer to parents/carers who had consented to be contacted. Consumer representatives were remunerated in accordance with health service guidelines where the project was conducted. Their involvement guided decision-making and helped to ensure that the voices of parents/carers remained central in the research process.

Phase 1 – Surveys with parents/carers

To capture parents/carers’ experiences of waiting, an online survey was sent in three waves of recruitment over a 7-month period to families on the waiting list for an initial CDP appointment.

Survey design

A purposively designed questionnaire was developed by the research team to explore parent/carer experiences while on the waiting list. The questionnaire included relevant demographic items, as well as questions regarding what families were doing while on the CDP waiting list (e.g., what have families done with the information and recommendations provided after the intake phone call), what has made it easy or challenging to take any steps, and what would help them to take further steps to support their child while waiting for a CDP appointment [see Additional file 1 for a copy of the survey]. The survey was piloted by 14 members of the CDP staff team who had previously accessed the service as consumers themselves, and their feedback was implemented into the final survey design. The survey was conducted online via Qualtrics. The survey period was from August 2023 to February 2024.

Recruitment

All parents/carers who had a child on the CDP waiting list aged between 12 months and 16 years, and who had agreed to be contacted about research opportunities in the CDP service at the time of their intake phone call were invited to participate. Invitations were sent via text message by the health service to parents/carers across three separate waves (Wave 1: n = 1082, Aug 23; Wave 2: n = 1418, Nov 23; Wave 3: n = 1392, Feb 24) to capture parent/carer experiences spanning different periods of waiting for an initial CDP appointment. Thus, at each wave invited participants included any parents/carers who had been on the waiting list from 0 months (i.e. immediately after their intake phone call) to more than 12 months. The invitation to participate included a link to information about the study, consent form and the survey. At each wave of data collection, a reminder text message was sent after two weeks and the survey was open for a month in total.

Participants

In total, 542 parents/carers completed the survey. However, as the survey was sent to the original participant pool across three different timepoints, some parents/carers completed the survey more than once. In the event of this occurring, these cases were linked and data was collapsed to represent a single cumulative waiting list experience so that individual family experiences were not counted more than once1. Thus, the final number of unique parents/carer participants was 450.

Parent/carer participants were predominantly mothers (90.7%), born in Australia (66.2%), and English speakers at home (78.9%). Identification as Aboriginal or Torres Strait Islander represented 5.3% of parents/carers and 9.3% of children. There was variation in the duration of time spent on the waiting list, age of the parent/carer, level of education, type of employment, family size, and care arrangements for the child (see Table 1). Children on the waiting list ranged in age from 1 to 16 years with a mean age of 5.22 years (SD = 2.36). It was not uncommon for families on the waiting list to have another child in the family with additional needs (35.6%) or for parents/carers to report concerns about their own mental health (26.0%)2.

Table 1.

Parent/carer and child demographic characteristics (n = 450)

	n	%
Relationship to child
Mother	408	90.7
Father	34	7.6
Grandparent	5	1.1
Other	3	0.7
Parent age (years)
Under 20	1	0.2
20–30	95	21.1
31–40	251	55.8
41–50	97	21.6
51+	6	1.3
Highest education level
Did not complete high school	55	12.2
Completed high school	99	22.0
Post-secondary qualification	114	25.3
University degree	158	35.1
Other	24	5.3
Employment status
Employed full-time	129	28.7
Employed part-time or casual	111	24.7
Stay at home caregiver	114	25.3
Studying full-time	8	1.8
Studying part-time	2	0.4
Unemployed or unable to work	23	5.1
Other	12	2.7
Mixture of responses	51	11.3
Care arrangement
Shared caregiving in the home	305	67.8
Shared caregiving outside the home	30	6.7
Single parent/caregiver	100	22.2
Other	15	3.3
Child’s gender
Male	301	66.9
Female	147	32.7
Non-binary/third gender	0	0.0
Prefer not to say	1	0.2
Prefer to self-describe	1	0.2
Child’s number of siblings
None	71	15.8
1	169	37.6
2	106	23.6
3	54	12.0
4	4	0.9
5 or more	46	10.2

Note. Percentages may not total 100 due to rounding

Phase 1 – Surveys with staff

A mixed methods online survey was also used to collect responses from two groups of staff within the health service including the Intake Team, who complete intake phone calls with parents/carers, and health professional staff within the CDP, who conduct initial and subsequent clinical appointments.

Survey design

Members of both the Intake team and CDP staff team completed a purposively designed survey developed by the research team. The survey included demographics about their work history, as well as questions about their experience of providing support to families waiting for services and any suggestions that may improve families’ waiting experience. Given the difference in roles, the questions included in the CDP and Intake staff surveys were different in nature. Specifically, the Intake staff survey included more open-ended questions that focused on staff sharing the recommendations and support they may suggest to parents/carers during intake phone calls. The CDP staff survey included more closed questions that focussed on their perceptions of the supports, barriers, facilitators, and future suggestions for families prior to their first CDP appointment [see Additional file 2 for a copy of the staff surveys]. The CDP and Intake staff surveys were each piloted by 5 staff members who had previously worked in these teams but were now working in a different role within the organisation. The staff surveys were conducted online via Qualtrics in June 2024.

Recruitment

All allied health professionals working in the Intake and CDP staff teams were invited to participate in the study, with their team leader distributing an email invitation to their work email address with information about the study and a link to the online survey.

Participants

In total, 7 health professionals from the Intake team completed the survey, and included speech pathologists (n = 4), occupational therapists (n = 2), and social worker (n = 1). Intake staff reported an average of 9.86 years (SD = 2.46) of clinical experience and had worked in Intake for an average of 7.07 years (SD = 4.69). Overall, 36 health professionals from the CDP team completed the survey, including speech pathologist (n = 13), occupational therapist (n = 7), psychologist (n = 5), paediatrician (n = 4), physiotherapist (n = 3), social worker (n = 2), and administrative staff (n = 2) working across various locations within the service. CDP staff reported an average of 15.36 years (SD = 9.36) of clinical experience and had worked in the CDP for an average of 7.66 years (SD = 6.18). A small number of participating CDP staff (n = 3) reported that they had personally accessed the service for their own child.

Data analysis

Survey data from parents/carers and staff was stored and analysed using a combination of Microsoft Excel and IBM SPSS Statistics. All survey data were analysed using quantitative and qualitative methods according to question type.

Quantitative analysis

Most variables were categorical and summarised using descriptive statistics (frequency counts and percentages). Multiple-choice and “select all that apply” items were also summarised by frequency. Open-ended “Other (please specify)” responses were analysed quantitatively when distinct categories could be identified. No inferential analyses were performed, as the aim was to describe response patterns rather than test hypotheses.

Qualitative analysis

Inductive content analysis [30] was used to analyse open-ended survey responses from all participant groups that related to the research questions regarding barriers and enablers for families taking steps to support their child while waiting and suggestions to improve the waiting experience. Three members of the research team were involved in the analysis, with each member responsible for different sections of the data. Open-ended responses were read by the assigned team member to build familiarity with their section of data. Meaning units (groups of words or sentences that conveyed the same central meaning) were identified, and each meaning unit was allocated a code. Coding was reviewed by the other research team members for rigour, and revised as needed to ensure accuracy and consistency across coders and sections. Codes were combined to form categories (i.e., key strategies to support families while waiting) and sub-categories as per the steps outlined by Graneheim and Lundman [30]. Analysis of the data was supervised by a senior researcher and discussed at team meetings to support rigour and credibility of the research findings [30], resulting in some re-organisation of subcategories to better explain the data. Written summaries of the data contained in each of the final categories (i.e., key strategies) were produced.

Phase 2a – Prioritisation survey

In Phase 2, a mixed-methods sequential exploratory approach was used, combining an online prioritisation survey (Phase 2a) and focus groups/interviews (Phase 2b) which occurred in September to October 2024.

Study design

To understand parent/carer priorities for action, an online prioritisation survey was developed in Qualtrics. The survey presented the key strategies identified from Phase 1, and participants were asked to rank these in order of priority by dragging them into their preferred sequence (see Fig. 2).

Fig. 2.

Prioritisation survey presented to participants in Phase 2a

Recruitment and participants

The survey was distributed to the same group of eligible participants from Phase 1 to enable broader participation from parents/carers on the CDP waiting list. A total of 54 parent/carer participants completed this prioritisation survey.

Data analysis

Survey responses were exported to Microsoft Excel and analysed descriptively to determine the relative importance of each potential action. Frequencies of item rankings were calculated and converted to weighted scores, with the highest priority receiving a score of 7 and the lowest a score of 1. Weighted scores were summed across participants to produce an overall ranking of items, indicating group-level priorities.

Phase 2b – Focus groups

Study design

Qualitative data were collected through three focus groups/interview sessions with parents/carers. Two members of the research team who were senior allied health clinicians with experience conducting focus groups facilitated each session (HS or KD) alongside one of the project parent representatives (SF, DA, or DW). While the intention was to conduct larger focus groups to collect this information, due to low participant numbers, two of the focus group sessions included only 1 participant outside of the research team attended despite broader interest being expressed. For this reason, the term ‘focus group/interview’ will used throughout the manuscript to describe the data collected in Phase 2b. During these focus group/interview sessions, key strategies from Phase 1 were presented to stimulate discussion and ideas about ways to improve families’ waiting experiences and to identify priority strategies to support families waiting for a CDP appointment. The proposed format, facilitation, timing, and location of the focus groups were developed in consultation with parent consumer representatives on the research team.

Recruitment

Parents/carers who expressed their interest and provided their contact details at the end of the survey in Phase 1 were invited to participate in Phase 2b. Parents/carers could choose their preferred format for focus groups (online or in-person).

Participants

Focus group/interview participants were a subset of those described in Phase 1. Although only limited demographic information was available based on participants’ self-disclosure, the first focus group included a mother of three children (Parent 1), the second focus group/interview included a mother of two children with the youngest presenting with developmental concerns (Parent 2), and the third group comprised three participants: a mother of four children with all either diagnosed with Autism Spectrum Disorder (ASD) or ADHD or going through the diagnosis process, a mother of a 3½-year-old non-verbal boy with ASD, and a mother of a child with developmental delay (Parents 3–5).

Data collection

All three focus groups/interviews were held online using Microsoft Teams due to participant preference. The focus groups/interviews ranged from 45 to 62 min in duration (M = 53.6 min) and were recorded. Data from parent representatives was included in the analysis where they reflected on their own waiting experiences. Data from clinician facilitators (KD or HS) were not coded. Participants were presented with an overview of the results from the Phase 1 survey, including identified barriers to families accessing supports for their child while waiting for a CDP appointment, and the key strategies identified from open-ended participant responses. Participants were asked to expand on the key strategies and share their views and experiences as a parent/carer on the CDP waiting list [see Additional File 3 for run sheet].

Data analysis

Due to the nature of the data, a combination of inductive and deductive content analysis was used [31]. Focus group/interview transcripts were first coded inductively line-by-line by a member of the research team to capture the depth and nuance of participant discussions. These codes were then deductively categorised according to the categories (i.e., key strategies) identified through inductive analysis of open-ended survey responses in Phase 1. Coding and categorisation were reviewed at team meetings to support rigour and credibility of the research findings [30]. Codes that did not align with existing key strategies from Phase 1 were initially grouped separately, then integrated as a result of peer debriefing with team members.

Phase 3 - Implementation

Prioritised strategies from Phase 2 were initially shared with the CDP leadership team in a meeting to discuss feasibility of implementation in the CDP. This meeting included discussion about other projects that were underway in the service that could be informed by the results of Phase 2, existing partnerships that could be expanded, as well as considering feasibility of new initiatives. Following the meeting, the leadership team determined actions that aligned with the prioritised strategies from Phase 2 that could be piloted and implemented within the CDP. Actions were initially implemented across a 6-month period from January to June 2025, and parent consumer representatives were involved in the planning and implementation of a number of these actions through meetings with delegated project leads from the service. Examples of these actions are reported descriptively in the Results below. Review and further development of these actions is ongoing.

Results

Phase 1

Steps taken to support child’s development

Parents and carers were asked to indicate the steps they had taken to support their child’s development following their intake phone call (see Fig. 3). The three most common steps amongst the 450 respondents were: searching the internet/website/social media/online forums (n = 230, 51.1%); accessing therapy support through NDIS Early Childhood Approach (ECA; n = 210, 46.7%); and seeking advice from family and friends (n = 194, 43.1%). Parents and carers were more unlikely to: link with Family and Child Connect support service (FaCC) (n = 19, 4.2%); contact the Child and Youth Mental Health Service (CYMHS) (n = 20, 4.4%); or to take no steps at all (n = 23, 5.1%).

Fig. 3.

Steps taken by parents/carers (n = 450) and steps CDP staff (n = 36) perceive parents/Carers take to support their child’s development following an intake phone call or appointment (data reported in percentages)

CDP staff were also asked to indicate what they thought were the most common steps that families take to support their child’s development while waiting for an initial CDP appointment (see Fig. 3). The three most common steps that CDP staff (n = 36) nominated were: accessing therapy support through NDIS/ECA (n = 31, 86.1%); booking/having a hearing test (n = 27, 75.0%); and accessing another health professional (n = 21, 58.3%). CDP staff expected that parents were more unlikely to: contact the CYMHS service (n = 0, 0.0%); attend Triple P Online or Fear Less Online (n = 0, 0.0%); and contact university allied health/therapy clinics (n = 1, 2.8%).

Health professionals accessed

Parents/carers who selected ‘Accessed another health professional’ (n = 194) as one of the steps they had taken to support their child’s development were subsequently asked which health professionals they had accessed for their child. The survey logic for this question did not require participants to enter a response and only 73.2% (n = 142) of participants opted to enter a response. Of the 142 respondents, the majority had accessed: a GP (n = 113, 79.6%); speech pathologist (n = 85, 59.9%); or occupational therapist (n = 80, 56.3%). Fewer had accessed a paediatrician (n = 66, 46.5%); social worker/counsellor (n = 32, 22.5%); or a physiotherapist (n = 11, 7.8%). Forty-one respondents (28.9%) selected “other” when asked which health professionals they had accessed with the majority of these respondents reporting they have accessed psychologists (n = 26, 63.4%).

All CDP Staff were asked which health professionals they thought parents/carers may have accessed for their child while on the waiting list. Of the 24 CDP staff that responded to this question, the three most common health professionals nominated were: GP (n = 14, 58.3%), speech pathologists (n = 12, 50.0%), and occupational therapists (n = 11, 45.8%).

Facilitators to taking steps

When parents/carers (n = 417) were asked to evaluate what made it easy to take steps to support their child’s development, the top three factors that emerged were (see Fig. 4): understanding the advice and information given during the intake phone call/appointment (n = 192, 46.0%); support from family and friends (n = 155, 37.2%); and feeling confident about taking the steps (n = 115, 27.6%).

Fig. 4.

Facilitators reported by parent/carers to taking steps to support their child’s development

Barriers to taking steps

When parents/carers (n = 416) were asked to evaluate what made it challenging to take steps to support their child’s development, the top two factors that emerged were: not being able to get an appointment (n = 175, 42.1%); and the other service was too expensive (n = 145, 34.9%) (see Fig. 5). The next highest response was “other”, (n = 91, 21.9%). In open-ended text responses, parents/carers also reported practical and logistical barriers including the cost of accessing alternative services, long wait times, and travel requirements to appointments. They also described feeling overwhelmed by the complexity of the system, uncertain about what steps to take next, and frustrated by complicated processes for accessing supports. Some families noted they were waiting for a diagnosis before they could progress with other services.

Fig. 5.

Barriers that made it challenging for parents/carers to take steps to support their child’s development

CDP Staff were also asked to report the top 3 barriers that they perceived families would report as preventing them from taking action. Four key barriers were identified by the 36 respondents (see Fig. 6): they were overwhelmed as too much information was provided (n = 23, 63.9%); not being able to get into other support options (n = 16, 44.4%); lack of time (n = 16, 44.4%); and the other support options were too expensive (n = 15, 41.7%).

Fig. 6.

Staff perceptions of barriers to parents/carers taking steps to support child development

In their open-ended text responses, both CDP and Intake staff identified barriers related to family capacity and circumstances, including time constraints on busy parents, competing life stressors (housing instability, unemployment, managing multiple children), difficulty navigating fragmented services, lack of awareness of available options, language barriers for some families, and parents managing their own health or neurodevelopmental challenges that affected their advocacy capacity.

Responses from parents/carers who didn’t take steps or stopped taking steps

Parents/carers were asked if they are currently taking any steps or whether they have stopped taking any steps while their child is on the waiting list. Of the 406 parents/carers who answered this question, 347 (85.5%) said they were still actively taking steps, while the remainder said they started taking steps but had since stopped. When those who had stopped taking steps were asked why (n = 59), the main reason that emerged was not knowing what to do next (n = 34, 57.6%), followed by ‘have taken all recommended steps’ (n = 19, 32.2%), ‘busy/ lack of time’ (n = 17, 28.8%), ‘family had other needs’ (n = 17, 28.8%), and ‘other’ (n = 17, 28.8%).

A second subset of parents/carers who reported that they never took any steps to support their child’s development while on the waiting list responded to a follow-up question about what made it difficult to take any steps. Of those who responded (n = 23), the two main issues identified were; not being sure what to do next (n = 10, 43.5%); and busyness/lack of time (n = 7, 30.4%).

Identified strategies

Open-ended survey responses from parent/carer and staff participants were analysed to identify key strategies that would support parents while they wait. Seven categories (i.e., key strategies) and sub-categories were identified (see Table 2).

Table 2.

Key strategies identified from qualitative survey responses across participant groups

Categories (i.e., Key strategies)	Sub-categories	Summary of key strategies	Example quotes
Provide a summary and action plan for families after phone call	• Provide a clear, written summary of phone call • Provide an action plan for parents about ‘what to do now’ • Prioritise information based on parent needs • Provide documentation for sharing with other professionals • Provide support with completing referrals to other services	Parents described feeling overwhelmed by the information shared during the initial phone call. Both parent and staff participants suggested that a clear, written summary and action plan following the call would be helpful, and this should be prioritised based on what is most important to parents. While many professional staff acknowledged that providing a summary was part of their standard process, it was not always completed consistently. Participants also highlighted the need for support with completing referral processes to other relevant services, as well as receiving documentation to share with other professionals such as general practitioners and schools to support coordinated communication.	“The phone call with Child Development was extremely helpful and supportive, however I’m still unclear of what happens from here and what the next steps are.” (Parent 379) “I was told that I should try and get [my child] appointments with a speech therapist and an [occupational therapist], but it would be approximately a year before we would see someone from the Child Development Program. As a first time mum this was very overwhelming. And then the call just ended I was then left to try and navigate finding a speech therapist by myself and I was also left questioning well what am I meant to do with [my child] for the next year?” (Parent 172) “If multiple recommendations provided – I will email family or send an intake summary. Otherwise I clearly re-state the 1 or 2 recommendations at the end of the call.” (Intake Staff 1) “It really depends where they are at – do they already have some understanding of their child’s development, or is the discussion quite new to them… We can’t expect families to follow-through with lots of recommendations. I try focus on what is going to be most helpful/meet their needs at the time of the call. I also offer to send information for them to come back to.” (Intake Staff 6) “Helping families prioritise next steps rather than giving a long list of possible recommendations would likely support increased parental self-efficacy for families.” (CDP Staff 16) “I think a written letter of recommendations that can be shared with GP/allied health/school would be beneficial.” (CDP Staff 27)
Tell families what the waiting time is and what will happen next	• Communicate waiting times (even if they are long) • Explain what will happen next • Indicate when families will hear from the service • Share priority category on waiting list	Uncertainty about timelines was identified as a source of anxiety and frustration for parents. They highlighted that even a long wait would feel less stressful if it was communicated clearly. Staff participants also identified the importance of communicating waiting times to provide predictability for parents. Some parents noted that understanding their child’s priority category on the waiting list helped provide context about their situation. Parents wanted to understand what would happen and approximately when they would hear from the service.	“I wasn’t sure how long things were going to take.” (Parent 356) “More communication with updates on wait time.” (Parent 422) “Confirmation still on waitlist given long wait times.” (Parent 204) “Updates regarding expected waiting times.” (Parent 342) “Send written information to families with all recommendations given as well as a visual diagram of CDP predictable journey with estimated wait times.” (CDP Staff 13)
Check in regularly with families while they wait and provide ongoing recommendations	• Follow up with families regularly to prevent them feeling ‘lost in the system’ • Consider flexible frequency of check-ins based on family preferences • Provide additional resources and guidance • Link families with community supports	Parents identified that regular follow-up while waiting would reassure them they were not “lost in the system.” Preferences for this follow-up varied between parents. For example, some wanted monthly text reminders, while others preferred phone calls every few months, with flexibility to increase contact if circumstances changed. Parents identified that follow-up also provided opportunities for the service to provide additional suggestions for resources and guidance on what to do if concerns escalated. Staff also identified that check ins, especially through a phone call, could provide an opportunity to reiterate recommendations and to link the family with community supports if they hadn’t already accessed these.	“Check in call (wait time, any additional supports required) remembering some parents have no idea what to do, please be patient, kind and understand concerns.” (Parent 174) “I feel like I am stuck and have zero information about who to call or what to do. I wasn’t even sure that I am still on the wait list because I have heard absolutely nothing since the first term of school.” (Parent 290) “You have to wait and wait because of this stupid system that your child is just a number.” (Parent 60) “When I was waiting, it would have been good to have more regular contact to say we were still on the wait list and what other services would be useful in the meantime.” (Parent 44) “I believe if [Intake call team] had capacity for a ‘check in’ phone call - maybe a month or two following the initial phone call - this would be a good opportunity to reiterate recommendations for supports in the community. Again, there is so much covered in the phone call with families having to tell their story, I am sure many families hang up the phone feeling completely overwhelmed so a check in could be really useful.” (CDP Staff 2) “There are some families who take action and others who don’t. I think a therapist (not admin) should ring them at the 3 month wait and check whether they had actioned the recommendations from [Intake call]… If not linked with [NDIS Early Childhood Approach (ECA)], then there on the phone help them to apply.” (CDP Staff 32)
Help families understand ‘the system’	• Provide information about different professionals and services • Provide information about eligibility and funding options • Provide information about how to access services, including getting on waiting lists • Help families understand the responsibilities of educational settings and what they can do to advocate	Parents identified that navigating “the system” could be overwhelming. They wanted information to help them understand eligibility requirements, which professionals or services could provide support for their needs, and financial options such as available government rebates. Staff echoed these concerns, noting that parents can have difficulty understanding what different organisations provide. Both parents and staff identified the need for clear resources that explain what services do and what families can do themselves, such as getting on waiting lists. Some participants suggested that written guides or drop-in sessions could be used to provide this information. Parents also emphasised the importance of understanding the roles and responsibilities of schools, kindergartens, and daycares, as this helped them advocate for their child.	“I didn’t know where to start.” (Parent 353) “There are no challenges [to taking steps] as I know the system.” (Parent 108) “More guidance about what to do in between – what I can access, and who to talk to and where to go for help.” (Parent 172) “Quicker access through the school supports would have been helpful.” (Parent 32) “Can we provide a resource that clearly states what the ECA does, what families need to do (e.g. get on waitlists), difference between plan manager and support coordinator (often families think the plan manager will find support services for them).” (Intake Staff 1) “The system makes engaging with these programs difficult, even for people who are highly motivated and capable.” (CDP Staff 26) “[Families have] difficulty navigating services and systems (including understanding services provided by different organisations).” (CDP staff 12)
Provide resources and strategies to help families support their child’s development at home	• Validate what parents are already doing well • Provide practical strategies and resources for use at home in various formats • Consider group-based education sessions	Parents expressed a need for practical resources and strategies to help them support their child’s development at home while waiting for services. Staff identified that it was important to validate what parents were already doing well, before helping them to prioritise strategies to try next. When it came to types of resources that could be provided to parents, participants emphasised that videos or demonstrations could be more effective than written materials alone. Some participants suggested having a centralised online hub or a portal where families could access downloadable resources. Group sessions highlighting particular areas of development, parent education sessions, and opportunities to connect with other families facing similar challenges were also suggested as possible options to help families support their child’s development at home.	“Need resources to start in the meantime.” (Parent 39) “As waitlist are long maybe government appointed allied health run playgroups so parents get advice to help children with speech and OT needs at help, allocating 5 mins to 10 mins giving tips what they can do at home.” (Parent 69) “Pick two most concerning areas for parent and focus on strategies to support these.” (Intake Staff 2) “You are doing so much already for [child]! I love that you’re reading books and going to playgroup/library/friends house with kids…. One other thing that can help kids to talk is…” (Intake Staff 7) “We have to remember too, that we are giving verbal strategies and ideas - it can be challenging for some parents to then know what this actually looks like.” (Intake Staff 6) “Video demonstrations, official handouts with strategies - I think many people are visual learners / need modelling and to watch someone else do it to fully understand how to implement a strategy.” (Intake Staff 3) “Website/portal for families on the waitlist with FAQs, links to resources and services.” (CDP Staff 3) “Group sessions would be great! Connecting parents in a group to the next steps and gathering some observations.” (CDP Staff 36)
Help families prepare for their first Child Development Program appointment	• Help families understand what to expect at the first appointment • Provide adequate time to complete forms and questionnaires in advance • Provide an understanding of the possible outcomes of an appointment	Parents highlighted the need for guidance to help them prepare for their first Child Development Program (CDP) appointment, noting that they often did not know what to expect. After waiting for a long time to hear from the service, some parents reported receiving parent or school questionnaires with short deadlines, leaving limited time to observe and report on their child’s skills. Parents identified that having forms and assessments handed out earlier would allow them to prepare more thoroughly and complete them with greater accuracy.	“Information about next steps to take would be beneficial. That way when the first appointment arrives, you are ready and not waiting on results from hearing/eye tests or letters from school etc.” (Parent 79) “More information sent about what the Child Development Program will do once we get an appointment.” (Parent 379) “[I would like] A breakdown of how assessments work.” (Parent 349) “They should also have another call 1 month prior to their initial appointment being booked - in this call ask the family to complete our Caregiver questionnaires and the school/childcare questionnaires, get summaries/reports from any private therapy services they are accessing… This information is + + beneficial at our initial appointment and will make the CDP journey much quicker as often this information has to be followed up once they come in for that initial session.” (CDP staff 32)
Support parent mental health and understanding of how they can advocate for their child	• Support parent mental health and wellbeing • Facilitate peer connections and support • Link families with flexible professional supports • Support families to be an advocate for their child • Help families talk to their child about what is happening	Parent responses highlighted a significant need for supporting parents’ own mental health, as many described the journey of raising a child with developmental challenges as isolating, overwhelming, and emotionally exhausting. Parents reported that peer connections could help reduce feelings of loneliness and also valued professional-led supports that could be accessed flexibly (e.g., hotlines or online resources). Parents also identified a need for guidance on how to advocate effectively for their child, and talk to their child about what was happening, as well as navigating conversations with schools and other professionals. It was noted that check-in calls could potentially be used to assess parent wellbeing, share information about existing available supports, and offer guidance on how families could advocate for their child’s needs.	“Lack of supports, exhaustion from years of advocating.” (Parent 42) “My anxiety gets worse the more I think about it all.” (Parent 355) “Overwhelmed and at a loss.” (Parent 197) “A support service for me, to check in and see how I am going.” (Parent 430) “I’m lucky I got extra support from a social worker at the hospital whom put me onto [parent support program] so I have a coach to help me put my own goals into place and they help with other things as well then after the coaching I will get counselling sessions to help as well – more accessible programs like these are needed for parents to help support them while on this journey.” (Parent 409) “I’m still learning and understanding all the steps of getting the help that I need for my child.” (Parent 429) “Resources on how to support and talk to my child about what they may be diagnosed with.” (Parent 351) “Would you like personalised parenting support for help managing this little at home because it does honestly sound really, really tough at the moment I’m wondering if getting some support would help?” (Intake Staff 7)

Phase 2

Phase 2a – Prioritisation

Participants (n = 54) ranked the seven key strategies from Phase 1 based on what would make the most difference to families waiting for a CDP appointment. Table 3 presents the suggested strategies in descending order of their total scores (i.e., in order of most to least popular). The most impactful strategy was “Providing a summary and action plan for families after phone call”, followed by “Tell families what the waiting time is and what will happen next” and “Help families understand ‘the system’”. “Support parent mental health and understanding how they can advocate” was the lowest-ranked strategy in the prioritisation survey.

Table 3.

Strategies prioritised by parents/carers to support families while waiting (n = 54)

Rank	Strategy	Total Score
1	Providing a summary and action plan for families after phone call	306
2	Tell families what the waiting time is and what will happen next	253
3	Help families understand “the system”	228
4	Check in regularly with families while they wait and provide ongoing recommendations	223
5	Provide resources and strategies to help families support child development at home	212
6	Help families prepare for their first CDP appointment	177
7	Support parent mental health and understanding how they can advocate	141

Phase 2b – Focus groups

Focus groups/interviews were conducted with parents/carers to explore these key strategies in greater depth. Through analysing focus group/interview data, it became evident that two of the strategies (“Tell families what the waiting time is and what will happen next” and “Check in regularly with families while they wait and provide ongoing recommendations”) were interrelated and thus were merged into one strategy to accurately capture the shared underlying concept. Thus, focus group/interview data was organised into six categories (i.e., key strategies).

When discussing the first key strategy, “Provide a summary and action plan for families after their phone call”, participants described feeling overwhelmed by the volume of information provided during the initial phone call. One parent explained:

You’re so overwhelmed with all the information that they give you after you’ve had your phone call… and they sent out all these leaflets and stuff and you’re like well what do I do? What’s the most important thing to do? (Parent 3)

Participants emphasised needing clear prioritisation of recommendations to know where to begin. They also highlighted the value of written or online information that could be revisited later, with one participant noting: “Having [information about what happens next] in written form or online would be helpful for people to go back to when they have more capacity to take in information.” (Parent 2).

When discussing the second key strategy, “Check in regularly with families while they wait and provide ongoing recommendations”, participants emphasised the importance of regular follow-up contact while on the waiting list to ensure families did not feel forgotten by the service, either by phone call or text. One parent explained: “I figured that if they kept checking in, they will know if someone’s having a hard time and can keep suggesting resources” (Parent 1). Participants described these check-ins as serving multiple purposes: maintaining connection with the service, providing reassurance that their case remained active, and creating opportunities for staff to offer additional support as needs changed. As one of the parent representatives noted about their experience: “Following up [shows] me that I’m not getting lost, they are still aware of me, I am still in the system” (Parent Representative 1). Another participant said: “We forget about things because we’ve got a million things going on, a million things we need to do. It’s a periodical text message to let us know we’re moving up in the queue or it’s still progressing” (Parent 3).

In relation to the third key strategy, “Help families understand the system”, many participants described navigating the service system as challenging. One of the Parent Representatives described his experience of working through the different pieces involved:

Just sort of understanding the navigation piece, and my wife and I trying to sort of work through the bureaucracy, as well as the NDIS piece happening on the side, and just trying to work out what was all going on. (Parent Representative 2)

One participant noted that they wanted help in understanding what was relevant to their specific situation:

Who does what and where you can actually go and what you’ve gotta do next. You don’t need to know ‘who does what’ for every service – you only need to know what you need to. (Parent 3)

Other participants wanted practical information such as “examples of services you can access and things like that” (Parent 4) and emphasised the need for clearer information about eligibility requirements and available supports. For example:

I think helping understand that ‘cause you just feel like you do the next thing and the next thing and you kind of hoping that this results in some sort of support. But the system is quite tricky… I think for some families it must be incredibly challenging if they’re not eligible for NDIS and what other supports there might be. (Parent 2)

When discussing the fourth key strategy, “Provide resources and strategies to help families support their child’s development at home”, participants identified the need for accessible, practical resources such as videos and tip sheets that could be used at home to support their child’s development. They reiterated previous suggestions made by parents in the survey about creating a centralised location where families could access these materials, with one parent explaining: “The Child Development Service website should have a page with the videos and tip sheets and it doesn’t matter if some of them are external because it already exists” (Parent 1). Participants described the value of downloadable resources organised by developmental area or diagnosis. One of the Parent Representatives shared their experience of accessing resources at a private practice:

The private practice that we ended up going with for one of my children have a portal for parents where you can actually download all of these really cool things… So if there’s something where it’s like a very easily accessible portal for parents to go - if your child has ADHD, if it’s ASD, or any of these other things, here’s access to all of this stuff that you can download and use at home. (Parent Representative 3)

For the fifth key strategy, “Help families prepare for their first CDP appointment”, participants emphasised the need for clearer information about what to expect at their first appointment and adequate time to complete required paperwork. When asked what to expect, one parent stated: “I don’t [know what to expect for that first appointment]! It would be good to know” (Parent 1). Participants also described receiving forms with insufficient time to complete them. They described needing time to complete activities with their child to find out about skills and sometimes linking in with other stakeholders (e.g., school). For example:

If I had time, I would have like observed it, make him do that activity… That questionnaire should be handed out early so that parents have more time. (Parent 5)

The final key strategy discussed in focus groups/interviews was “Support parent mental health and understanding of how they can advocate for their child”. Although parents ranked supporting parent mental health as a lower priority during the prioritisation phase, the need to support parent mental health was emphasised strongly in both survey (Phase 1) and focus group/interview data (Phase 2b). Participants described reaching the service while experiencing significant stress and emotional exhaustion. For example, one parent explained:

As a parent of a special needs child… you’re in survival mode. And when you’re engaging with a service like this, you’re at the end of your rope. You’re at the end of your tether and you’re in crisis. I really do agree that there needs to be a lot more focus on parents’ mental health in approaching services like this, because you’re taking people who are at the end of the road when they finally do get through. (Parent 4)

Participants emphasised the importance of having a support network and having specialised mental health supports available in accessible ways, for example: “Trying to get into any sort of mental health support for yourself is difficult… When you’re trying to do this for your children and trying to even think about doing that for yourself, it’s all so overwhelming.” (Parent 3). A parent who was also in this conversation agreed and went on to say:

Just knowing that you have that support network can sometimes make the difference. It can be the difference between getting through the day and not getting through the day… Maybe it’s looking at teaming up with another mental health department who can offer that specialised help, because normal parenting support groups, they don’t work. (Parent 4)

Parents also discussed knowing how to advocate for their child. For example, one parent said: “I guess fostering that sense of confidence in parents to be able to, you know, speak up… if you disagree or you’re not feeling quite right about it” (Parent 2).

Implementation

Following feasibility discussions with CDP leadership, several actions aligned with the prioritised key strategies were piloted within the service. Table 4 provides examples of these actions and how they are aligned with the key strategies identified in Phase 2.

Table 4.

Example actions implemented in CDP following feasibility assessment

Key strategy	Example of action piloted or implemented in service
Provide a summary and action plan for families after phone call	• Updated documentation for families following intake phone call in a format that can be shared with school and early childhood education and care stakeholders, with input about language and format from staff and parent consumer representatives at regular meetings.
Check in regularly with families while they wait and provide ongoing recommendations	• Trial of check-in phone calls at one site – to be reviewed for feasibility across the service.
Help families understand “the system”	• Development of animated video to explain the purpose of CDP to families on intake, with parent consumer input at regular meetings (e.g., providing input on storyboarding, content and design of videos). The final video can be viewed at this link: https://youtu.be/QGHQDRK6nq0 • Linkages with NDIS Early Childhood Approach to provide families with clear information about support options
Provide resources and strategies to help families support child development at home	• Review of service resources which can be distributed to families early • Ongoing partnership with service partners to consider other resources which can be provided to families
Help families prepare for their first CDP appointment	• Development of animated video with consumer input to explain ‘what to expect’ in first CDP appointment
Support parent mental health and understanding of how they can advocate for their child	• Reviewing existing services resources and how these are disseminated to families • Conversations with public parent support services about what can be offered to families

Discussion

This study, guided by a co-design framework [26] and conducted in three phases by a collaborative team of researchers, staff and leadership within a service, and parents/carers, aimed to explore how families could be better supported during long waits for child development service appointments in a major metropolitan setting. Survey findings in Phase 1 indicated that both staff and parent/carers perceived opportunities for families to take active steps while waiting for an initial CDP appointment; however, barriers were also identified. These barriers primarily related to limited access to, and costs associated with, other services, aligning with findings internationally (e.g. [15, 17, 19]). Difficulties “knowing what to do next” were also a common reason parents/carers reported not initiating or ceasing taking steps, also consistent with prior research [17]. Although effects of socio-economic status were not examined in the current study, previous work suggests that costs, access, and knowledge of ‘where to go next’ may disproportionately affect families from lower socio-economic backgrounds, potentially further compounding delays in early support [17]. Taken together, these findings highlight a need for targeted support strategies that ensure families receive the right information at the right time, addressing key financial and informational barriers to support equitable access to early intervention, particularly for families experiencing vulnerability.

Health services have a responsibility to support access to information in line with family-centred care [32], and investing in the right support at the start of families’ journey with a service may significantly enhance families’ ability to navigate the waiting period successfully. In the current study, participants identified a need for this health service to help families understand the ‘system’ and individualise help for families by providing a summary and action plan after their intake phone call. This need aligns with prior research that has demonstrated cognitive and emotional load for parents when navigating fragmented service systems for children with delay or disability, which can be particularly challenging for families already managing other stresses (e.g. [22, 33]). In the Australian context, the relevance of these findings have increased since data collection. Recent proposed changes to public funding models, including the NDIS [34], have added further complexity and uncertainty for families navigating support pathways. This evolving service landscape reinforces the need for clear, targeted information and personalised action plans at the start of their journey that empower families to act without information overload.

As well as providing clear and relevant information from the start, findings of this study indicate that families need ongoing support while waiting, which suggests the health service could be checking in regularly with families while they wait and providing ongoing recommendations. Participants considered these regular check-ins by the health service to be important to prevent families feeling “lost in the system”, provide reassurance during periods of uncertainty, and allow services to respond to changes in the child’s developmental needs or family circumstances that may warrant re-prioritisation or additional support. It was acknowledged by participants that these regular check-ins would result in increased service resources (i.e. staff time and communication costs), and suggestions to mitigate this included different frequencies of contact (e.g., monthly, quarterly) and communication methods (e.g., text messages, phone calls). Parents/carers and staff also identified a need for helping families prepare for their first CDP appointment and for this information to be provided early in their waiting journey to reduce anxiety about what to expect and to enable more productive initial consultations as families would come prepared with relevant information and questions. This could subsequently make better use of limited appointment time, potentially reducing the number of subsequent appointments (freeing up staff availability and clinical appointments) and additional time gathering information from external stakeholders.

Not only did parents/carers in the current study want clearer information from a service perspective, they also called for better access to resources and strategies to support their child’s development at home. Interestingly, while CDP staff responses in the Phase 1 survey indicated that they primarily expected parents/carers to be accessing formal services, one of the most commonly reported steps taken by parents/carers in the Phase 1 survey was searching the internet, social media and online forums for information about supporting their child’s development while waiting (see Fig. 3). The importance of informal parent information-seeking about supporting child development has been well-documented (e.g. [35–37]), as has the increase in parents using internet searches, social media and online forums to seek health and development information for their child [38, 39]. While informal information-seeking by families provides opportunities for immediate access to information and peer support, families can have difficulty evaluating information they find independently online [40] and accessing information from trusted sources (e.g. [18, 41]). Thus, these findings highlight an important role for health services and professionals to support families in accessing reputable and trustworthy information.

The importance of supporting parent mental health was highlighted by participants in Phase 1 and 2b of this study. Interestingly however, parents/carers ranked this idea lowest during the prioritisation phase (Phase 2a) which we hypothesise was due to parents/carers prioritising their child’s needs over their own. Similar patterns have been reported in other research with parents of children with potential or diagnosed neurodevelopmental disorders where high levels of anxiety, depression and caregiving stress have been reported alongside low uptake of mental health services [19]. Reported barriers to parents/carers accessing mental health support include limited mental health literacy regarding when and where to seek help, cost of services, long waiting times, and practical constraints imposed by high caregiving demands [19, 42]. There is a clear need for paediatric services to more proactively connecting families with accessible mental health supports, including formal services that can be accessed flexibly via digital and telehealth platforms [19].

Beyond connecting families with formal mental health services, the importance of informal and community supports must also be acknowledged. Parents/carers in Phase 1 noted that having support from family and friends and feeling confident about taking steps helped them to take steps to support their child’s development while on the waiting list. This aligns with research demonstrating that peer and family support facilitate access to early intervention [15], acts as a protective factor against parental stress and enhances parental self-efficacy and well-being [43], and are strongly preferred by parents of children with neurodevelopmental delay or disability when grounded in shared ‘lived experience’ [44, 45]. Therefore, healthcare services providing family-centred care should actively facilitate links to informal and community supports (such as family and friends, peer support groups and community organisations), recognising these connections as an important complement to professional services in supporting parent wellbeing during the waiting period.

While this co-design project has resulted in the successful implementation of several actions to support families during the waiting period, it is important to acknowledge that meaningful health service redesign requires sustained time and investment. The success of this co-designed research project depended on strong organisational commitment beyond traditional quality improvement, with leadership support that enabled staff participation through dedicated time and resources. Project champions were essential in maintaining momentum across extended timelines and supporting institutional implementation. Trusting relationships, effective communication and mutual respect for the diverse expertise of health professionals, service managers, researchers and consumer representatives were also critical to success. Involving parents/carers in the co-design process across project phases strengthened this project, although we acknowledge that levels of this involvement varied across phases in line with the practical realities of co-design research [46]. In Phase 1, a large group of parents/carers provided consultation through survey responses. In Phase 2, parent/carer participants provided consultation through focus group/interviews, and parent consumer representatives acted as co-designers as they were actively involved in the design and implementation of research activities (i.e., focus groups/interviews). In Phase 3, parent consumer representatives were collaborators in development of actions for implementation as well as being actively involved in data analysis, write up of the project and dissemination of research findings. It is acknowledged that involvement of parents/carers in research can be demanding, especially when parents/carers are asked to revisit challenging experiences, and this involvement requires time investment. Appropriate remuneration and active support from the team were essential for ethical and sustainable consumer engagement and should be considered in similar future studies. We acknowledge there is still more to learn about how parents/carers wish to be involved in research in order to move towards genuinely co-designed and co-led projects together. Finally, implementing service-level changes such as modifications to documentation processes and information-sharing protocols was found to be complex due to privacy regulations and technical constraints. These challenges highlight that while co-design can generate innovative, family-centred strategies, translating these strategies into sustained practice requires ongoing organisational commitment, adequate resourcing, and working through multilevel system complexities. Services embarking on similar redesign projects should be prepared for this complexity and plan accordingly for the time and investment.

A number of strengths enhanced the quality and rigour of this study. As discussed above, collaboration was a key strength of this project. Members of the research team shared a common drive for change and a desire for the voices of both parents/carers and staff to be heard, bringing complementary skill sets that contributed to the overall process. The number of responses obtained in the Phase 1 surveys was another notable strength, with the use of SMS for recruitment proving to be particularly effective in facilitating the participation of parents/carers. However, several limitations should also be acknowledged. Firstly, recruitment was undertaken in waves with an aim of tracking changes in parental perception of self-efficacy over time, however an issue with how this question was presented to participants in the survey software meant this was unable to be achieved, leading to the decision to analyse data cumulatively rather than across waves. Despite efforts to diversify participation, parent/carer participants were predominantly female, reflecting a common challenge in research involving parents. Despite consulting families about their preferences, and offering both in-person and online options at various times throughout the day, focus group/interview participation was limited. This may highlight the ongoing challenge of engaging busy families who are already balancing numerous demands on their time. A tension identified by the project team was between the extended timeline required for rigorous research, and the immediate demand for clinical service improvement, which is a common challenge in practice-based research that warrants consideration in future collaborative projects related to health service design.

There are several important directions for future work. First, further investigation is needed to identify how families experiencing vulnerability can be recognised early and provided with targeted support to reduce disadvantage while waiting for services. Future studies should continue to explore strategies for reaching underrepresented groups, including fathers and families from culturally and linguistically diverse backgrounds. Given the importance of parent confidence and self-efficacy in supporting children with developmental delay or disability, investigating how these outcomes change while parents wait for services, and whether the actions implemented in the current study enhance self-efficacy would provide valuable insights in the future. Use of a tool such as the Parent Self-Agency Measure (PSAM) [47] could provide opportunities to capture changes in self-efficacy over time. As parent/carer self-reported mental health status was observed to change across waves of recruitment in the study, a future research direction would be to understand how and why parent/carer mental health may change while waiting for services. As planned for this study, a formal evaluation phase would also strengthen understanding of the impact of co-designed strategies. Establishing processes for sustained consumer involvement in service improvement work would enable ongoing, real-time input from families accessing services. Finally, sharing lessons learned with other health services and having broader conversations about research-practice partnerships could facilitate wider adoption of family-centred approaches to managing wait times and support services in translating evidence into practice across contexts.

Conclusions

This project explored how families could be better supported during extended waiting periods for a child development service in a major metropolitan city through a co-design approach that brought together expertise from clinicians, managers, researchers and parents/carers in partnership with parent consumer representatives. Across the three phases of the project, six key strategies for supporting families were identified and actioned within the health service. This study demonstrates that combining the lived experience of families with multidisciplinary clinical expertise through genuine co-design partnerships can generate feasible, sustainable solutions aimed at better meeting families’ diverse needs during waiting periods for services. For services facing similar challenges with wait times, this work offers both practical solutions for supporting families, and a model for engaging families as genuine partners in service improvement research.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

NDIS

National Disability Insurance Scheme

SDOH

Social Determinants of Health

CDP

Child Development Program

ECA

Early Childhood Approach

FaCC

Family and Child Connect

CYMHS

Child and Youth Mental Health Service

Author contributions

Senior researchers in the project team (RA, NS) contributed to the conceptualisation and design of the study alongside CDP clinical partners (HS, KD, CB, AO, JB-O, JO). NB and RA conducted quantitative analysis of survey responses, while KM, HS, and KD completed qualitative analysis, with findings discussed at team meetings with all authors. HS and KD facilitated data collection for focus groups/interviews alongside parent representatives (SF, DA, DW). KM conducted initial coding and categorisation of focus group/interview data, which was reviewed and refined by HS, KD, NS and RA through iterative discussion. All authors contributed to interpretation of Phase 2 findings and approved the report provided to CDP leadership to guide Phase 3. Parent consumer representatives (SF, DA, DW) were actively involved in the development of several actions that were subsequently piloted within the service. Following a whole-team meeting to identify and discuss the key findings and messages arising from the project, KM, NB and RA led preparation of the manuscript, with all authors contributing to and approving the final manuscript.

Funding

Funding support for this research was provided by a Speech Pathology Australia Queensland Registration Board Legacy Grant.

Data availability

Additional files with full survey details are available with this manuscript. The full datasets generated and/or analysed during the study are not publicly available due to considerations of privacy.

Declarations

Ethics approval and consent to participate

Ethical clearance was obtained from the Children’s Health Queensland Human Research Ethics Committee (HREC/2023/QCHQ/91912) and ratified by The University of Queensland Human Research Ethics Committee (2023/HE000562). The study was conducted in accordance with the Australian National Health and Medical Research Council’s National Statement on Ethical Conduct in Human Research. The study was conducted in compliance with the ethical principles outlined in the Declaration of Helsinki. All participants provided written informed consent before participating in this study.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.