‘Feeling like you can't do anything because you don't know where to start’—Parents' Perspectives of Barriers and Facilitators to Accessing Early Detection for Children at Risk of Cerebral Palsy

ABSTRACT

Background

Early detection of cerebral palsy (CP) risk is possible from 12 weeks corrected gestational age (CGA) using standardised assessments; however, up to half of children at risk are not referred early, missing out on early intervention. We investigated the barriers and facilitators to accessing early intervention from the perspective of parents of children who did not receive services by 6 months CGA.

Methods

Parents of children with CP were invited to participate in qualitative semistructured interviews. Reflexive thematic analysis was used to analyse the data and develop themes.

Results

Eight mothers of children who did not receive standardised screening participated in interviews, from which three themes, ‘responding to delays’, ‘systemic barriers’ and ‘complexities of diagnosis’, were developed from the data.

Conclusions

Parents require more support to access and engage in early detection services; health system processes are difficult to navigate, and health professionals require education and training to recognise risk factors for CP in all health settings and refer promptly. Improving system processes, education and training and partnering early with parents to improve their experience when interacting with the health system may increase early engagement and optimise long‐term outcomes for children at risk of CP and their families.

Summary.

• Mothers reinforced the importance of early diagnosis and support for families.

• Timely provision of information and better communication could improve care.

• Health system navigation is complex and delays access to early intervention services.

• Further work is needed to support early recognition of red flags for risk of CP during developmental monitoring and prompt referral for investigation and intervention.

1. Introduction

Cerebral palsy (CP) describes a nonprogressive disorder of posture and movement which occurs in the developing brain (Rosenbaum et al. 2007) and is the most common physical disability in childhood, with a reported prevalence of 1.6 per 1000 live births in high income countries (McIntyre et al. 2022). Children at high risk of CP can be detected from 12 weeks corrected gestational age (CGA) using standardised assessments (Novak et al. 2017; Morgan et al. 2016), have the diagnosis communicated sensitively (Novak et al. 2019) and be referred for early intervention (Jackman et al. 2021; Kwong et al. 2024; Novak et al. 2020; Morgan et al. 2021). The positive health and economic impacts of early diagnosis and intervention for children, families and society are well established (Morgan et al. 2023) and align with parent research priorities (McIntyre et al. 2010).

The guidelines for early detection of CP are being implemented in services around the world (Kwong et al. 2024; Davidson et al. 2022; Hoei‐Hansen et al. 2023; Maitre et al. 2020; Byrne et al. 2017; Te Velde et al. 2021; King et al. 2021; Sandle et al. 2020); however, many children are still referred after 6 months CGA, and some much later. Children referred late miss out on early detection and intervention during a critical period of neurodevelopment.

The aim of this study was to investigate barriers and facilitators to accessing early detection and intervention from a statewide tertiary service, from the perspective of parents of children referred after 6 months CGA. This study will enable codesign of accessible services for children at risk of CP and their families and has relevance for other services where delays identifying and managing young children with CP occur.

2. Methodology

2.1. Research Design

A qualitative constructivist research paradigm was used, which values the subjective meanings of participants' experiences, developed through interactions with others. Constructivist researchers ‘often address the “processes” of interaction among individuals’ and focus on ‘specific contexts’ (Creswell 2014, 25), which aligns with the researcher's aims of understanding, interpreting and contextualising parent's experiences after late referral and graduation from an early intervention service.

2.2. Participants

Iterative purposive sampling was used to recruit parents of eligible children referred after 6 months CGA to a tertiary early intervention service which had implemented the guidelines for early detection of CP in four phases (described elsewhere (Davidson et al. 2022)). Children were placed on a randomly sorted list before the first sample of parents was invited to participate in a semistructured interview. Recruitment, data generation and analysis occurred concurrently between October 2022 and July 2023. Recruitment stopped when the research team saw recurring instances of the same codes, concluding the data contained sufficient information to answer the research question while not making an overall claim of saturation (Braun and Clarke 2019; Cena et al. 2024). Children were excluded if they were in out‐of‐home care or receiving palliative care.

2.3. Materials

The interview guide was codesigned with a consumer group of parents, young people with lived experience of disability and Aboriginal Elders. The guide used the Objective, Reflective, Interpretive, Decisional (ORID) framework (Hogan 2003) (Supporting Information S1) to add context and temporality by encouraging participants to describe and then interpret their experiences. It was piloted with two external interviewees and required no changes prior to use.

2.4. Data Generation

Participants were offered an interview in person, by telephone or videoconference. Contemporaneous notes were taken during interviews and used reflexively during data analysis. Participants could invite a support person to attend their interview, and Aboriginal participants were offered Aboriginal research buddies to facilitate cultural safety. Interpreters were available if English was not the participant's primary language.

Interviews were transcribed verbatim using Microsoft 365 Teams before the interviewer compared the recording and transcript and corrected transcription errors using Microsoft Word's ‘Track Changes’. Parents were asked to review their transcript before it was used for analysis.

2.5. Data Analysis

Reflexive thematic analysis (RTA) (Braun and Clarke 2021) was chosen because of its theoretical flexibility, reflexivity and use of inductive ‘open’ coding to reflect parents' experiences and meanings (Byrne 2022; Braun and Clarke 2023). Using RTA recognised each researcher's positionality, subjectivity and creativity as essential contributions to data generation, analysis and theme development (Braun et al. 2019; Braun and Clarke 2020).

The first author, a female health professional and doctoral student, conducted and coded all interviews and maintained a reflective diary. Another author (D.H.), an academic health professional with extensive qualitative research experience, coded five interviews to enhance reflective discussion and data analysis. The authors (health professionals and researchers) discussed how their roles and values contributed to the diversity and depth of data analysis. Some authors familiar with the research setting could be described as ‘insider researchers’ (Appleton 2011; Bayeck 2022; Greene 2014), who understand the context and enhance the validity of data generation and analysis. However, relationships were fostered and open, probing questions used to balance any perceived power imbalances and assumptions (Connelly and Peltzer 2016). The first author used the research team and the consumer group as ‘critical friends’ to enhance rigour, trustworthiness and generalisability (Tracy 2010). ‘Critical friends’ are trusted people who ask provocative questions to challenge assumptions (Appleton 2011; Noor and Shafee 2020) and facilitate reflexivity and data integrity. Using ‘critical friends’ highlighted inter‐relationships and connections between the researchers, participants and data.

Cena et al.'s (Cena et al. 2024) six step method of analysis was used as a flexible guide to the RTA process. The first author became familiar with the data by editing the transcripts, highlighting concepts and adding notes. Data was coded by the first author using NVivo (Lumivero 2023) and by the second coder (D.H.) using an inductive, latent approach.

The researchers discussed the initial codes before the first author refined the codes and started to link patterns across the data. This recursive process resulted in 30 codes, representing unique concepts generated from the data. Codes were transcribed to coloured paper squares, grouped to reflect shared concepts and then refined with another experienced qualitative researcher (C.H.). After reflecting on participant context, data temporality, theme relationships and hierarchies, final themes were confirmed with the research team.

2.6. Demographics

Children were allocated to the Australian Bureau of Statistics' Socio‐Economic Index for the Areas (SEIFA) quintiles and Accessibility Remoteness Index of Australia remoteness classifications (ARIA) (ABS 2016) based on their postcode. The Gross Motor Function Classification Scale—Expanded and Revised (GMFCS‐ER) (Palisano et al. 2008) was used to categorise motor severity and the modified adverse childhood experiences (ACEs) checklist (Wickramasinghe et al. 2019) to document exposure to childhood adversity. Children's referral dates were allocated to an implementation phase: preimplementation, Phase A (service design), Phase B (clinician training) and Phase C (service implementation) (Davidson et al. 2022), and dates of early detection assessments (Hammersmith Infant Neurological Examination [HINE], brain MRI and General Movement Assessment [GMA]) were recorded.

2.7. Ethics Approval and Reporting

The Human Research Ethics Committees at Curtin University (HRE2021‐0112) and the Child and Adolescent Health Service (RGS4288) approved this study. All participants provided informed consent. Guidelines for documenting qualitative research were referred to when reporting this study (Cena et al. 2024; O'Brien et al. 2014) (Supporting Information S2).

3. Results

Eight mothers participated (Figure 1), and while the results are reported as mothers' experiences, four participants frequently referred to both parents' experiences. Interviews averaged 30 min; six used Microsoft Teams, one used telephone and one was face to face in a hospital outpatient setting; no one used a support person. Three mothers returned their transcripts, and none requested changes. Although English was an additional language for three mothers, none required an interpreter. Table 1 provides demographic details, including participant pseudonyms.

FIGURE 1.

Participant recruitment flowchart. *CGA, corrected gestational age.

TABLE 1.

Mother's pseudonyms and child details.

Pseudonym	Monica	Katie	Claire	Jill	Mary	Maree	Barbara	Holly
Single parent	√						√	√
First child	√					√
Only child						√
Referral age (months, corrected)	14	13	14	22	36	7	7	15
Child's age at interview (years)	9	8	9	9	11	10	6	8
Preterm < 37 weeks corrected gestational age at birth		√	√		√		√	√
GMFCS‐ER level Ambulant (I–III) Nonambulant (IV–V)	IV	III	III	II	I	I	I	IV
Area of residence	Major city	Major city	Major city	Major city	Major city	Major city	Major city	Remote country
SEIFA quintile 1 (low) 5 (high)	Q2	Q3	Q1	Q4	Q4	Q5	Q2	Q2
Exposure to ACEs NR (not recorded)	NR	No	No	No	No	NR	NR	NR
Implementation phase	A	B	B	B	B	Preimplementation	C	B
Standardised CP early detection assessments	MRI	MRI	MRI	MRI	—	MRI	HINE	MRI

Abbreviations: ACEs, adverse childhood experiences; GMFCS‐ER, Gross Motor Function Classification Scale—Expanded and Revised; HINE, Hammersmith Infant Neurological Examination; MRI, magnetic resonance imaging (brain); SEIFA, Soci‐Economic Index for Areas.

Three themes, with subthemes, were developed from the data: ‘responding to delays’, ‘systemic barriers’ and ‘complexities of diagnosis’. All present barriers to early detection (Table 2).

TABLE 2.

Themes and subthemes.

Theme 1—‘I knew something was wrong …’: Responding to delays

‘Did they … not tell me?’: Insufficient communication and support

‘What can I do to help him?’: Becoming an advocate

‘I was so busy’: The context of advocacy

Theme 2—‘I've learnt how to navigate some of the systems …’: Systemic barriers

‘I did not know there was an option’: Systemic reasons for delays

‘I've… rung back six times’: Learning to navigate the system

Theme 3—Complexities of diagnosis

‘I did voice my concerns’: Perceptions of watchful waiting

‘It's not high on the radar’: CP is not the only priority

3.1. Theme 1—‘I knew something was wrong …’: Responding to Delays

Mothers reported delayed access to early detection and intervention and developed their agency to advocate for care. Three subthemes highlight mothers' unmet expectations, learned advocacy and mediators used to access care.

3.1.1. ‘Did they … not tell me?’: Insufficient Communication and Support

Only three babies received neonatal surveillance despite high‐risk pregnancies. One mother took her baby home without enough information; ‘They told me he wasn't feeding properly but didn't communicate why. Did they know something was wrong and not tell me?’ (Monica). Others felt helpless; ‘I wasn't sure what to do … I didn't know how to move, who to call. It was all a little bit hard.’ (Jill). One mother of five children, three born prematurely, did not understand referral pathways, and neither did her GP; ‘I went to the GP, and they said to call the hospital he was born at and see if there's a follow up or something or other.’ (Katie).

Disempowerment reduced mothers' capacity to understand their baby's needs, access care and partner with health care professionals; ‘I feel like I can actually be an active member of her (other) treatment teams because I understand those two (other) conditions and I understand … the complexities … enough to make a meaningful contribution…while the cerebral palsy, we still can't understand.’ (Mary). One mother from a remote community relied on the health system to coordinate travel, reducing her agency and access to support.

Lack of early support had lasting impacts, resulting in conflicting trust and expectations; ‘In my head when I bring him to the hospital I think “nothing can happen to him here”, versus; “I avoid [the hospital] if I can, go to ED and outpatients and come for pharmacy scripts only.”’ (Monica). There were also persistent, mixed emotions; ‘I do get upset when I look at her [baby photos] … when I see the pictures it reminds me of the mindset I was in, and just not knowing. But now I can smile about it because she's come so far ….’ (Claire).

3.1.2. ‘What can I do to help him?’: Becoming an Advocate

Mothers who did not receive the support they expected were resilient and persistent; ‘I used to take her to the doctor … you have to bring her again, and (I) asked, “Hey, why is she doing [those abnormal movements]?”’ (Holly). They sought advice from family, alternative and mainstream health practitioners; ‘… I knew something was wrong … I went to a paediatric physiotherapist. She said ‘Ohh well, I don't know … and maybe we will never know’. She was very vague, but she left me even more confused’ (Maree).

Mothers used the internet to find information; ‘The whole process … no‐one explained cerebral palsy, I googled it myself’ (Monica), although this caused distress: ‘I was on the computer every night doing research, … and we all know that Dr Google isn't good. I'm coming up with all these things like, “is he gonna die? What's wrong with him?” …I knew it was CP, but I hadn't been told … I was still researching and …, (asking) “What can I do to help him?”’ (Katie).

Two expatriate families sought services overseas, believing they provided better care: ‘… we were very concerned about her growing up. So we decided to move back…within two weeks we were starting early intervention … healthcare for children is so much better [here]’ (Maree). Mothers were prompted into action because of information and service gaps. All found a way to advocate for access, regardless of their resources and how long it took. However as one mother said; ‘… that's an extra burden on the families … we shouldn't be having to [carry that]’(Mary).

3.1.3. ‘I was so busy’: The Context of Advocacy

The efforts mothers undertook to support their babies were deeply embedded in the context of their lives. Each mothers' advocacy was activated and shaped by stress, the complexity of their child's condition, how they recognised developmental delay, their access to funds and knowledge of the health system.

For example, poor communication increased stress; ‘I never got told any results or any non‐results. … I didn't get told anything.’ (Katie), and several mothers reported simultaneous, multiple, significant stressors: ‘… I just had my third baby. My marriage had broken down, so I was already in an absolute fishbowl of chaos.’ (Barbara). Most recognised the impact of the early emotional, caregiving burden they carried, when the emphasis was on baby's survival; ‘I was so busy. It was such a horrible time in my life … I honestly didn't know what … happened in those four weeks he was in hospital.’ (Katie).

The family burden of coordinating care increased with multiple conditions and comorbidities; ‘… if XX's cerebral palsy was the only thing I had to deal with it would be a lot easier. But … she can have anywhere between 5 to 14 doctors that we engage with’ (Mary), making it harder for both parents to understand information; ‘But we also had other distractions at that time too, which probably… meant … we didn't prioritise understanding … (cerebral palsy) … it's … put in the “when I have time” basket’ (Mary).

Mothers recognised their baby's motor delay by comparing them to siblings, relatives or other children; ‘… I kept saying, “look … my baby's not opening her right hand.” And they said “Ohh, I don't know …”. Everybody did not know, but I saw all the other kids use both hands and mine did not.’ (Maree). Inconclusive responses reinforced mothers' resolve and advocacy.

Some mothers could pay to access private health care for faster referral to public tertiary services; ‘… we went … private because it was … hard to get to the public one … the paediatrician referred me to a physio … that did a few tests, and that was quite expensive, but we did it with them.’ (Jill); however, this was not an option for all families.

Mothers suggested facilitators including plain language summaries; ‘… it needs to be … bite size because we don't have capacity to be reading (60 pages)…I get too emotional … I don't process anything; I need something that's just a snapshot that I can actually understand’ (Mary). Two mothers reinforced the importance of early diagnosis and intervention: ‘I definitely think diagnosis early … then you can get on with what you need to do’ (Katie), and ‘… the early intervention was critical’ (Maree). Stable relationships with health professionals facilitated understanding and engagement; ‘But it's still the same Rehab doctor that we originally saw. We have a … connection with him because he's been around from the beginning’ (Katie).

3.2. Theme 2—‘I've learnt how to navigate some of the systems …’: Systemic Barriers

Mothers experienced systemic barriers; two subthemes highlight how they recognised and navigated them.

3.2.1. ‘I didn't know there was an option’: Systemic Reasons for Delays

System structures including service locations and workforce composition delayed access, reduced continuity of care and were exacerbated by geography and socioeconomic factors. Tertiary early detection services were located in the major city, supported by local services in country areas. Maintaining workforce composition, volume and skills in country areas was challenging; ‘…some people just work for a while, and they leave… she's had on and off therapies. I don't know why they always… leave. Every few months…they go’ (Holly). High workforce turnover disrupted therapeutic relationships and reduced consistent intervention.

System processes caused delays. Accessing information about referral and communication pathways, waitlists, private and public health options was difficult; ‘I said, “… this is taking so long. I want to know now” … (they said) “you can go private”. If I knew … I would have gone straight to private … without waiting so long’ (Jill). Although private services reduced referral times, access to comprehensive tertiary early intervention services relied on public health system capacity. Long waitlists caused delays, tracking referrals and transferring between private and public services was difficult; ‘the first referral went out to wherever it went into the universe’ (Katie).

Communication processes were barriers to responsive, person‐centred care, creating anger: ‘… no one giving me any answers. It was very upsetting, all this “guinea pig testing”’ (Monica); frustration: ‘I know they are teaching the next doctors, but I would love them to explain things’ (Monica) and suspicion: ‘… all the people … I saw up till then, they knew … it was cerebral palsy’ (Katie). Mothers suggested providing information while families are waiting; ‘… one thing that … would help parents is … while we're waiting … touch base with parents … (and explain) “This is why you were (referred). This is what you can expect”’ (Mary), and after diagnosis; ‘… [give them] general information … direct people to information sources. Rather than just be told something and then sent home and you've got to dig through the internet’ (Claire).

Information transfer was a barrier; risk factors highlighting the need for developmental surveillance were not consistently transferred between perinatal health teams; ‘There were some red flags …. It was a high‐risk pregnancy.’ (Claire). Of three babies identified ‘at‐risk’ and monitored, the earliest referral was at 7 months CGA, one was identified at 2 years old, however the referral was not actioned for another 12 months and one was referred at 15 months CGA at the mother's request.

System roles and responsibilities delayed access to care. Mothers were alert to which professionals could diagnose CP risk and provide support; ‘…the physiotherapist … put through a request to see a paediatrician …, because obviously she already knew that he had cerebral palsy … because she's not a doctor, she wasn't able to tell me’ (Jill). Mothers suggested changes to facilitate early detection; ‘The person who could have pushed these things forward would have been the health nurse. … If she had a checklist when (she sees babies) you could have a much faster diagnosis.’ (Maree).

3.2.2. ‘I've … rung back six times’: Learning to Navigate the System

Mothers felt lost finding their way into the system; ‘… it's mainly just the communication was the biggest one and the feeling like you can't do anything because you don't know where to start’ (Mary), falling out of the system; ‘… everything moved to [a new hospital] and we slipped between the cracks’ (Monica) and finding their way back in again (or not). As their experience and agency increased, mothers developed strategies to stay in the system; ‘Frequently… I've… rung back six times and… they have no record of me even ringing the first time … one of things … I do is … always ask the name of whoever it is [to] … have that accountability’ (Mary). This mother described how important connecting with other families to navigate the system was for her and her husband; ‘We rely on other parents, … because you get the peer support’ (Holly).

Finding ‘the right person’ to answer their questions was challenging; ‘It's trying to understand …. where these referrals are going to, what people are doing, where they fit in the bigger system…I had no idea’ (Katie), and it was not always clear whether health professionals understood referral pathways. Meeting someone they could understand was a relief; ‘Then I got referred to Dr [XXX]. He was very patient and explained what was wrong and the next steps to take’ (Monica) and; ‘… the Rehab doctor was the one that really eased my mind with it all … and explained what it is and what it does and how it affects [my child] … I think he helped a lot’ (Katie).

3.3. Theme 3—Complexities of Diagnosis

The diagnostic delays described were attributed to the challenge of diagnosing CP, including attention to other priorities in premature babies, health professional knowledge gaps and a ‘wait and see’ approach to diagnosis. Mothers found these delays confusing and frustrating.

3.3.1. ‘I did voice my concerns’: Perceptions of Watchful Waiting

All mothers described their growing recognition of developmental delays; ‘I was worried because obviously I had another child, so I knew he was different’ (Jill). Some hopefully attributed delays to a ‘rough start’: ‘You always say, “… maybe because he had that problem when he was a baby” … he's a little bit behind [because of] that’ (Jill). Some received reassurance from family and friends; ‘I spoke to my friend [an alternative health practitioner], and she said, “Bring him in, we'll have a look…” She said, “There's nothing I can see or feel … out of place…. I wouldn't worry”’ (Katie). Some sought advice from health professionals: ‘I did voice my concerns … like how he lays flat. … I was just always told that some babies just lay like that. They couldn't see or feel anything out of place’ (Katie). Some experienced delays due to ‘watchful waiting’; ‘… …I told the GP she was three or four months old, and … said, “Look I'm a bit concerned because she's not using the right arm … she's not opening this hand”. And he said, “… I don't know about kids.” … they checked her reflexes, and everything seemed to be alright. And he said, “Let's wait for her to see if she starts crawling.”’ (Maree).

Many mothers experienced a growing sense of urgency, and although some ‘knew’ their child had CP, they searched the internet and worried. One mother expressed confused emotions after her baby was referred; ‘… by then I had already done my own research … and I knew it was cerebral palsy. I really knew within myself’ (Katie). Later she admitted to; ‘… wondering, “am I way off …?” … I didn't know what it was’ (Katie). Clear communication helped mothers understand the functional impact of CP and plan for the future; ‘Once I actually got told by the Rehab department, then…it felt different … I knew that's what it was and “OK, let's see what we can do.”’ (Katie).

3.3.2. ‘It's not high on the radar’: CP Is Not the Only Priority

Some mothers attributed diagnostic delays to the early focus on investigating other issues; ‘… the demand on the family, and I would say … a lot of pre‐terms … are in that category, [CP is] not high on the radar unless they're … a high level of CP, but if they're … mild … we have other concerns and worries’ (Mary), or acute priorities like feeding; ‘[my child] also had a lot of feeding problems, so there was a huge emphasis on that … Ended up she had to have the nasogastric tube …’ (Claire).

4. Discussion

This study reports how mothers perceived the journey to a diagnosis for their babies with CP. It provides context‐specific information that recognises service challenges and the impact on parents of information, support and diagnosis delays. Three themes were developed which reveal how mothers negotiated and interacted with the health system, the structures and processes of the health system and the process of detecting CP. Mothers reiterated their need for early detection and intervention, timely information, better communication and support for health system navigation, which is consistent with other studies (Morgan et al. 2023; Williams et al. 2021; Byrne et al. 2019).

4.1. Mothers' Expectations and Interactions With the Health System

Findings from this study confirm parents want honest communication at the time of diagnosis and information afterwards to facilitate access to early detection and intervention (Williams et al. 2021; Byrne et al. 2019; Ballantyne et al. 2019a; Dickinson et al. 2023; Smith and Blamires 2022). Poor communication contributes to poor parental mental health (Sivaratnam et al. 2021; Baird et al. 2000), suspicion that information is withheld, and reduces engagement in early intervention (Harniess et al. 2024). Stress, a well‐recognised impact of caring for a child with CP (Sivaratnam et al. 2021; Wang and Jong 2004; Pousada et al. 2013; Rentinck et al. 2009; Raina et al. 2005), reduced mothers' capacity to understand information. Stress resulted from high caregiver burden, coordinating care for multiple conditions and comorbidities, marriage breakdown, and may also be increased by parents' reaction to diagnosis (Huang et al. 2010). Stress and poor mental health are moderated by parent resilience, family and peer support (Sivaratnam et al. 2021; Rakap and Vural‐Batik 2024; Guillamón et al. 2013), so expansion of parent support programs, including Parent Acceptance and Commitment Therapy (PACT) (Dickinson et al. 2023; Whittingham et al. 2020; Whittingham et al. 2016), ENabling VISions and Growing Expectations (ENVISAGE) (Miller et al. 2022), peer‐to‐peer programs (Postma et al. 2024; Bray et al. 2017) and playgroups (Cuomo et al. 2021; Prest et al. 2022) will be important to build parent capacity (Frantz et al. 2018).

Parents need information to understand and participate in early intervention. To supplement and validate information from health professionals, mothers sought information from the internet and other parents. Parents use the internet and social media to access otherwise inaccessible groups with lived experience. Parents evaluate information in the context of their needs, family and social groups; this may influence their decision to engage in early intervention (Frantz et al. 2018). Information sourced from the internet is not always credible, and much research is hidden behind paywalls (Postma et al. 2024; Patterson et al. 2015; Ata et al. 2024; Jawed and Mowry 2023). Understanding how parents access, evaluate and use information will enable the development of accessible, trustworthy, timely plain language information that meets parents' needs (Byrne et al. 2019; Jackson et al. 2008; Wise and Gellasch 2022).

Mothers became advocates in response to information and communication gaps; they experienced access barriers and wanted a voice in their child's care. This reinforces findings from other studies (Smith and Blamires 2022; Harniess et al. 2024; Wise and Gellasch 2022). Information, peer support and strong therapeutic relationships empower parents (Reeder and Morris 2018; Reeder and Morris 2021), help them participate in care (Smith and Blamires 2022; Frantz et al. 2018; Kruijsen‐Terpstra et al. 2016) and counteract potential power imbalances which may persist despite moves towards collaborative, family‐centred care (Reeder and Morris 2018; Reeder and Morris 2021). Parents and children with CP have long‐term and frequent health system interactions. Supporting parents early may improve their experience and expectations, optimising outcomes for families and children.

4.2. Health System Organisation and Navigation

Health system structures and processes were barriers to accessing early detection and intervention, including communication processes, referral pathways and waitlists, and who communicates diagnostic information. Barriers included long waitlists and opaque referral processes within and between public and private health sectors. Mothers had to learn system navigation skills; other studies have also found system navigation is an additional burden carried by families that delays access to care (Williams et al. 2021; Smith and Blamires 2022; Sapiets et al. 2021; Ballantyne et al. 2019b).

System navigation is harder for families living in country areas, who require more health care but have less access due to high workforce turnover and the concentration of health services in major cities. Country children and children at risk of CP are disproportionately impacted by the social determinants of health (Davidson et al. 2022; Arefadib and Moore 2017; Woolfenden et al. 2019), reinforcing the need for equitable and accessible pathways into the health system so access does not rely on parents' capacity to ‘learn the system’ (Sapiets et al. 2021). System strategies and funding are needed to attract, retain and educate health professionals; assess and address the needs of local populations; and provide early intervention closer to home (Jawed and Mowry 2023; Phoenix and Rosenbaum 2019; Sapiets et al. 2023).

System roles and responsibilities are barriers to accessing care. Medical professionals take responsibility for diagnosing CP; however, parents often initiate the investigation of developmental delay with child health nurses or allied health professionals, who may suspect a baby is at high risk of CP but cannot diagnose due to their health system role. Mothers found lack of honest communication by therapists confusing and unhelpful. While the use of the term ‘at high‐risk of CP’ is advocated during the period of longitudinal developmental monitoring often required prior to diagnosis (Novak et al. 2017), it potentially reduces engagement in early intervention (Harniess et al. 2024) until parents receive diagnostic clarification and prognostication. This study reinforces the need to improve education and training so that frontline health professionals can listen to parent concerns and needs (Kemp et al. 2024), communicate CP risk clearly and empathically and advocate for early intervention during the diagnostic waiting period.

4.3. The Process of Detecting CP

Guidelines for recognising CP, communicating the diagnosis and providing comprehensive multidisciplinary support for parents and babies have been available for more than 20 years (Novak et al. 2017; Baird et al. 2000; Morgan et al. 2018); however, families still experience delays due to the ‘watchful waiting’ period imposed by system gatekeepers, poor communication and lack of information during the diagnostic period (Williams et al. 2021; Wise and Gellasch 2022). Both groups of children with CP identified by Hubermann et al. (2016); those who receive neonatal surveillance and those who do not were represented in this study. Although all mothers recognised their baby's developmental delays, none were referred early. This is despite access to long‐standing, well‐established surveillance pathways, including universal developmental screening by child health nurses, neonatal follow‐up for high‐risk babies and tertiary early detection and intervention for babies at risk of CP. Further work is required to strengthen connections between the universal and high‐risk surveillance pathways, improve information sharing and recognise red flags and rapid referral to tertiary early detection and comprehensive multidisciplinary early intervention.

Several frameworks have been developed to measure how health provider and patient dimensions contribute to effective health system performance (Voorhees et al. 2022; Levesque and Sutherland 2020; Levesque et al. 2013; Dworetzky et al. 2023), which may be useful in the implementation of an early detection network. The inexpensive tools being developed for use in primary care and universal developmental screening programs (Garfinkle et al. 2020; Officer et al. 2023; McNamara et al. 2022; Boychuck et al. 2020a; Boychuck et al. 2020b) may enable earlier identification of babies at risk who are not receiving neonatal surveillance (Morgan et al. 2018; Boychuck et al. 2019; Te Velde et al. 2019), earlier referral and better outcomes for children and families.

5. Strengths and Limitations

This study's strengths include the codesign of the interview guide with consumers (Hogan 2003), access to experts in qualitative research and addressing a knowledge gap in parent perspectives of barriers and facilitators to accessing early detection services. This perspective of mothers' access to early detection services from the start of their engagement with the health system complements and reinforces evidence that many experiences reported by mothers persist across their child's ongoing use of health services (Sivaratnam et al. 2021; Prest et al. 2024), highlighting the potential positive long‐term impact of improving access for parents at the start of the health care journey.

Some limitations limit transferability of findings. The average of 5 years between early intervention referral and interview occurred as recruitment commenced 3 years after the implementation of the early detection guidelines and targeted children referred late. Children in the sampling frame were referred at an average CGA of 19 months (range 6–49) and averaged 8 years old (range 4–11) when recruitment commenced; however, the average interview age was 7 years (range 4–9). Member checking and ‘critical friends’ were used to increase rigour and trustworthiness and minimise recall bias. Despite potential conflation of mothers' experiences accessing health services after early intervention, many barriers are experienced by people with neurodisabilities accessing health care, including gaps in knowledge and communication (Weitzman et al. 2024; Gonzalez et al. 2022). These factors also influence access to early detection services.

Both parents were invited; however, only mothers participated. Most studies of parent perspectives have more mothers than fathers (Morgan et al. 2023) perhaps reflecting the usual primary carer role for children with disabilities (Smith and Blamires 2022; Australian Bureau of Statistics [ABS] 2018) and highlighting the importance of mothers as information conduits for fathers when designing services. However, fathers' perspectives of caring for children with CP are different and important (Ballantyne et al. 2019a; Ogourtsova et al. 2021; Elangkovan and Shorey 2020) and are not represented in this study. This study gives voice to mothers who had been lost in the system; however, it is still missing some voices: Aboriginal, culturally linguistic and diverse and country families, known to experience higher barriers to accessing care (Ou et al. 2011; Hussain and Tait 2015; Harding et al. 2021; Green et al. 2018; Green et al. 2016).

Most children were referred before the full implementation of the clinical guidelines for early detection of CP; however, access to the assessments which triangulate CP risk (brain MRI, HINE and GMA) (Novak et al. 2017) has since improved. Translation of knowledge in clinical settings is complex and not linear (Straus et al. 2013), and while most parents may now have different experiences, the child referred during final implementation still experienced service gaps, reinforcing the importance of this study.

6. Conclusion

This study highlights barriers and facilitators to early detection services from the perspective of mothers, who reiterate the importance of early diagnosis, better information and communication to access and navigate the health system and participate in care. Early detection services require better structure and processes to reduce the need for system navigation and increase equitable access. Investing in education and training and trialling new screening tools in primary care settings may reduce barriers. Children with CP and their parents are long‐term health system users, and their early experiences have lasting consequences. Setting positive expectations early by empowering parents with timely information about services and CP may facilitate family participation in early and long‐term care.

Author Contributions

Sue‐Anne Davidson: conceptualization, methodology, data curation, formal analysis, validation, investigation, resources, writing – original draft, writing – review and editing, visualization, project administration. Ashleigh Thornton: conceptualization, methodology, validation, resources, supervision. Deborah Hersh: conceptualization, methodology, data curation, formal analysis, resources, writing – review and editing, supervision. Courtenay Harris: conceptualization, methodology, data curation, formal analysis, validation, resources, writing – review and editing, supervision. Catherine Elliott: conceptualization, methodology, formal analysis, validation, resources, writing – review and editing, supervision. Jane Valentine: conceptualization, methodology, formal analysis, validation, resources, writing – review and editing, supervision.

Ethics Statement

The Human Research Ethics Committees at Curtin University (HRE2021‐0112) and the Western Australian Child and Adolescent Health Service (RGS4288) approved this study.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Data S1. Supporting Information.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.