Psychosocial Support for Australian Families Impacted by Craniosynostosis: A Qualitative Study

Abstract

Objective

Families impacted by a craniofacial condition have reported mixed experiences of psychosocial support; however, the experience of Australian parents is not yet known. The current study therefore explores the psychosocial experiences, and needs, of Australian parents whose child has been diagnosed with craniosynostosis.

Design

Qualitative data were obtained from 21 online narrative interviews with parents of children with non-syndromic and syndromic craniosynostosis. Interviews were transcribed and reflexive thematic analysis was used to generate themes.

Results

Four themes were developed: (1) communication and trust in clinical care; (2) challenges in health system processes and communication; (3) challenges and strengths of family support networks; and (4) absence of psychological support in the clinical journey.

Conclusions

There is a lack of psychosocial support provided to families living with craniosynostosis in Australia. Parents have requested that psychological assistance and related supports be readily provided as an aspect of standard, family-centered care.

Introduction

Craniosynostosis is a congenital condition characterized by the premature fusion of one or more cranial sutures.^1,2 It has generally been accepted that the metopic suture fuses in infancy, with sagittal, coronal, and lambdoid sutures fusing in adulthood ³ —although recent research suggests that some sutures may never achieve complete fusion. ⁴ When a suture fuses early, brain growth is restricted, and future growth will be directed perpendicular to the other sutures that remain open, resulting in a misshapen skull. ⁵ Surgical treatment is almost always required in order to release the constricted skull and correct the distorted skull vault. ⁶ Surgery aims to eliminate the risk of raised intracranial pressure and optimize the child's cognitive functioning, aesthetic outcomes, and overall quality of life. ⁷

Globally, it is estimated that approximately 85,000 children are born with craniosynostosis annually and prevalence is increasing. ⁸ The rate of craniosynostosis in Australia is 1 in 1900 births with approximately 80% of cases classified as non-syndromic. Syndromic cases, associated with additional malformations, are diagnosed considerably less frequently (eg, Crouzon syndrome 1:35,000 births). ⁹ In Australia, sagittal synostosis is the most common form of single-suture craniosynostosis (48.5%) followed by coronal (17.7%), metopic (17.0%), and lambdoid synostosis (16.7%). ⁹ Notably, rates of coronal and lambdoid synostosis are higher than has been reported in other countries.^5,10

Parents of children with craniosynostosis often experience significant psychological distress, with caregivers of children with craniosynostosis reporting higher levels of stress, anxiety, and depression compared to parents of unaffected children.^11,12 The diagnosis itself can be a source of anxiety, as parents must navigate complex medical information, treatment options, and potential long-term outcomes for their child. ¹³ The need for surgical intervention, often at an early age, adds to this emotional burden, as parents face the uncertainties and risks associated with craniofacial surgery. ¹⁴ Additionally, concerns about their child's physical appearance, developmental progress, and potential social stigma further contribute to parental distress. ¹⁵ The psychological impact on parents is therefore not only immediate but can persist long after surgical treatment, underscoring the need for comprehensive psychosocial support systems.

The American Cleft Palate-Craniofacial Association's (ACPA) Parameters of Care guidelines suggest that “every effort must be made to assist the family in adjusting to the birth of a child with a craniofacial difference and to the consequent demands and stress placed upon the family” (p. 142 ¹⁶ ). Updated ACPA guidelines continue to recognize the importance of this psychosocial support, additionally advocating that assessments be undertaken regularly in order to monitor the family's emotional adjustment, resource needs, caregiver supports, and family functioning and that support groups and networking be facilitated with other affected families. ¹⁷ These guidelines reinforce the importance of addressing parental support needs and reflect evidence that parental psychological distress is a key risk factor for poor medical and psychosocial outcomes in children with a chronic illness. ¹⁸

Both informal (eg, families, peers, friends, and community) and formal (eg, healthcare providers and hospital settings) support networks are critical in assisting families to foster their child's positive development. ¹⁹ According to ecological systems theory, a child's development is influenced by a complex system of relationships across multiple levels of their environment: from the characteristics of the child themselves, to their immediate family, peers, health service resources, and changing sociohistorical circumstances (eg, COVID pandemic). ¹⁹ It follows that how a child responds to unexpected events and life transitions will, in part, depend on the psychosocial support provided to families at each of these levels.

The current paper extends recent qualitative research that examined the information and knowledge needs of Australian families (eg, learning about their child's condition and surgical treatment options, knowing what to take to hospital on the day of surgery, and understanding the long-term ramifications for their child). ²⁰ In contrast to this previous paper by the current research team, which focused on the information parents need about craniosynostosis and the overall craniofacial journey, this current paper focuses on parental interactions with individuals in their personal networks and the medical system. Parents discussed the level of psychosocial support provided by both, in addition to how they could have been better supported.

Therefore, in addition to global research highlighting the distress parents experience during their craniofacial journey, it was clear from Osborn et al. ²⁰ that parents in Australia also struggle in similar ways. Thus, in addition to describing the psychosocial experiences of parents, a key aim for the current study was to use these lived experiences to generate recommendations of best practice psychosocial support for craniofacial service providers not only in Australia, but globally—an approach that is consistent with the principles of active consumer involvement. ²¹

Method

Ethical Considerations

Study procedures were approved by The University of Adelaide Human Research Ethics Committee (project approval number H-2023-162). Interviews were conducted with all participants who provided written informed signed consent. Verbal consent was additionally obtained at the commencement of each interview. Each family was provided with an AUD $60 gift certificate as recompense for their time. All participant information was anonymized and pseudonyms allocated to ensure confidentiality.

Participants

This cohort, interview process, and study method is detailed in Osborn et al., ²⁰ with recruitment conducted by an Australian craniofacial foundation. Parents who expressed an interest were emailed a Participant Information Sheet and Consent Form. Twenty-one families whose child had been diagnosed with craniosynostosis participated in interviews: 19 children had non-syndromic craniosynostosis (sagittal, metopic, unicoronal or bicoronal synostosis) and 2 had been diagnosed with syndromic craniosynostosis (Crouzon [sagittal & unicoronal synostosis] & Muenke [bicoronal synostosis]). At the time of the interview, children were aged between 4 months and 20 years (11 males, 9 females, 1 non-binary individual). One interview was conducted with a mother/father dyad, the remaining interviews were undertaken with mothers only. One child was waiting for surgical treatment at the time of the interview, while all other children had already undergone surgery.

Dataset Generation

Parent's experience of support during their craniofacial journey was explored using 2 questions: (1) Can you tell me about the information and support you received when your child was (insert stage) that helped you cope with any difficulties you were facing? and (2) What information or support, that you didn’t get, would you have found helpful at (insert same stage) and how would you have liked it to be provided? These open-ended questions addressed specific craniofacial events (ie, diagnosis, surgery) or developmental stages: infancy (birth to 23 months); toddler age (2-4 years old); primary school age (5-11 years old); secondary school age (12-17 years old) and adult (>18 years old). The questions were developed by the first and second authors based on recent literature ¹¹ and their extensive clinical/research experience with parents of children with craniosynostosis. Questions were then reviewed and modified by a psychologist (third author) with expertise in neurorehabilitation.

At the commencement of the semi-structured interview, a brief summary of the study was provided, and background (demographic and clinical) information was collected. Interviews were conducted on an informal basis (eg, conversational tone, use of first names, casual attire) in order to reduce any perceived power imbalances and encourage participants to speak openly and honestly about their experiences. Participants were also encouraged to expand on their responses in any way they deemed relevant.

The 21 interviews analyzed in the current paper were undertaken between August and November 2023 and totaled 18 h, with an average length of 49 min per interview (range 33-99 min). Interviews were conducted face-to-face via Zoom conferencing and video- and audio-recorded with participant consent. Transcripts were generated automatically and subsequently reviewed by the first and second authors. Participants experiencing severe emotional distress during the interview were contacted (with their permission) by the second author (a clinical psychologist) who suggested possible support options. All were provided a copy of their transcript which they could amend, clarify, or add further information if desired, with one mother identifying an additional transcription error.

Data Analysis

An exploratory, qualitative approach was used in order to encourage participants to share their experiences in detail across broad content areas. Reflexive thematic analysis^22–24 was used to analyze the data and generate themes indicative of shared parental experiences, while enabling recognition of each families differing “realities”. Our analytic approach was inductive (ie, grounded in the actual data provided by the individual) and semantic because we were looking at the surface level of content provided (ie, the data are observational and descriptive). Reflexive thematic analysis recognizes that researchers bring their own experiences and interpretation to the analysis process and, likewise, that the interviewer's extensive research experience with this cohort will have inherently influenced the themes that were developed.

The approach taken for the current study was based on Braun and Clarke's recent explication of reflexive thematic analysis. ²⁴ This approach is not linear and requires the analyst to be familiar with the data so that a continuous process of review and refinement of developing themes can occur. Themes are based on shared meanings across participants. In the current study, themes were generated based on parent's perceptions of the psychosocial support they received during their craniofacial journey and how that may have been improved. Interview excerpts from participants have been included in order to accurately represent participant's perceptions.

Analysis

Comprehensive interviews undertaken with parents of children with craniosynostosis generated 4 themes related to psychosocial support mechanisms: (1) communication and trust in clinical care; (2) challenges in health system processes and communication; (3) challenges and strengths of family support networks; and (4) absence of psychological support in the clinical journey. These themes reflected parent's perception of their interactions with others, in addition to the psychosocial support provided to them across their craniofacial journey.

Theme 1: Communication and Trust in Clinical Care

Concerningly, parents noted that they were often provided with limited, or no, psychosocial support from the health system:

You just felt like another number churning through a system that, I get they’ve got a lot on, but… I don't even know how to narrow down how much more they should have done. (P11)

Nonetheless, parents believed the health system had few formal mechanisms that could assist them to obtain psychological support, had that actually been their focus. Without these formal support pathways, many drew reassurance from the communication style of clinicians:

He was, yeah, really amazing… he was so reassuring you know. He said, you know, you’re his parents you know best, and if anything's not right, I listen to you. We listen to you. You’re the ones who know, you know him better than I do. So I think that was very reassuring for us. (P13)

However, not all professional interactions were positive with some conversations described as flippant and perfunctory by parents. Others noted that some clinicians did not engage with them adequately during their child's treatment:

It didn’t feel consultative, it didn’t feel collaborative. It felt… my memory of it was it felt a bit like… talked at. (P1)

Similarly, parents identified having limited opportunity to ask questions, leaving them feeling dismissed and unsupported:

Sometimes it felt like there was a time limit, and you'd ask a question, and they'd already be standing up out of their chair and sort of leaving the room. And you're saying, like, hold on, I want to continue the, the consultation. (P5)

Nonetheless, the unspoken commitment to care by surgeons was noted by numerous parents. This approach provided them with emotional support and helped them to cope through a difficult process:

They, they definitely seemed to care. They were very confident, which is what I needed from a health professional at that particular time, because every other health professional I had spoken to was so wishy washy and that was terrifying. So I felt a lot of comfort you know, in their, arrogance, I don’t know, that's probably not the right word. They know what they’re doing, this is good. I can start to relax now, because this surgeon is telling people what to do and when to book and that type of thing. So the surgeons themselves were brilliant. (P9)

Clinicians that demonstrated a commitment to providing treatment that parents perceived had their child's best interests at heart were highly valued. Indeed, parents would often select a craniofacial surgery center based on this very reason. Some parents even relocated interstate, temporarily, for their child's surgical treatment if they did not trust that this was their clinician's guiding principle. The issue was not whether a course of treatment was convenient for the parent but, rather, what option would provide their child with the best opportunities:

It wasn't more-so that they listened to us, it was more that they looked at what our child needed, and did our child's best interest. When [hospital] were like, oh, we have to do [surgical technique], ‘cos that's our policy… So I think the fact that yeah, [interstate hospital] really just looked at what our kid needed, was so reassuring. And yeah, they would answer anything we needed, but we just mostly cared that they were looking at our kid. (P6)

Despite parents having a limited understanding of the overall process, those clinicians who displayed a communication style that was inclusive and reassuring were trusted to look after their child as necessary:

it's this feeling of, I don’t quite know what's going on but I'm going to trust that they know what they’re doing and they’ll contact you at the right time. (P4)

When clinicians got that communication process right, parents were so grateful for the support received, particularly when it was prompt and helped to reassure anxieties about their child's treatment:

in hindsight, you know… your brain's doing funny things, and you don’t want to be a burden on anyone and I found it difficult to reach out to people and ask questions even, as well. We did get back to the, the cranioplastic surgeon in [hospital]and… he just, he immediately responded… in terms of the support that he offered… he was just wonderful. (P7)

Nonetheless, one aspect that parents consistently found difficult was the decision-making process around which type of surgery to select for their child. Some had contacted multiple surgeons in their attempt to ascertain what treatment was “the best” but found the selection of treatment type daunting because choices were based on the type of surgery performed by that particular surgeon:

they all recommended their own procedure, and wouldn't give you the pros and cons of the others. They wouldn't really help you make that decision. It was just we do it this way because it's best, and if you want to, you can book in, and if you don't, you know you're welcome to go somewhere else. (P5)

This type of response highlighted the difficulties parents encountered when trying to ascertain whether a particular course of action was being recommended because it was best for that particular craniofacial clinic, or what was best for their child.

Theme 2: Challenges in Health System Processes and Communication

Despite the confidence that parents generally had in their surgeon's ability, they often felt let down by the health system's associated processes. Notably, parental perception regarding ease of contact and support differed across states of Australia. Parents were worried about falling through the cracks when they did not receive any contact from “the system” for weeks or months at a time, which only served to increase their anxiety:

aside from me ringing the craniofacial nurse, for example, we, we haven't had any professional input for the last, at least 3 months, 3 or 4 months at this stage, from that 7 month appointment. And before that we had no input from 6 weeks. So, yeah, it's been challenging. (P22)

Adding to this problem was the fact that often parents did not know who to contact about their child's condition:

and then I hung up the call, and because she’d called from a private number, afterwards of course, all the questions kind of flooded in and I had nobody to call. (P9)

Sometimes the problems of who to contact, in addition to the lack of regular communication combined to make the process even more difficult for parents:

And we're still on a wait list for the [hospital]. So this was in February that we had this appointment. So it's probably coming up to 6 months now. When I tried to follow up the referral… I couldn't get in touch with him. I couldn't even get in touch with the, the neurosurgeon department either. I kind of went through switchboard several times like it was, yeah, it was very difficult. (P7)

Others noted the disconnect between being provided with individuals to contact, but then finding that they were not knowledgeable about their child's condition, or were unable to actually assist:

then there was this period of 6 weeks and during that 6 weeks we had nobody to contact. (P9)

Even when parents knew where to get information, they found it difficult to communicate with the relevant hospital department, which many found frustrating:

Yeah, but then, even then, you try and call the, the clinic, and I think they only run on a Wednesday… They say to you ‘oh call us anytime, if you have any questions’ blah blah blah, but then you try and call and try and get an answer, and it's just, you get the total ring around, like you're on hold, or they're not there. You leave a voice message or whatever and you don't get a reply, not quickly anyway, if at all. (P10)

Related to this problem was the fact that, at times, parents felt like their child's medical carers constantly changed, which affected their confidence and trust in the overall process:

Sometimes you want to actually be able to speak to the surgeon. I couldn’t remember any doctor's names, I couldn’t tell you which doctor operated on my child, like it just, it felt like every time someone came in, it was someone different. (P2)

Some families were provided a comprehensive multi-disciplinary team (MDT) to manage their child's treatment. These meetings provided parents with reassurance that their child was receiving holistic, well-rounded care. However, the way in which these meetings were managed, often left parents feeling overwhelmed:

it was really confronting walking into that room and seeing, you know, the surgeons there you know, and we were sitting in the middle of the room and there were eight people just staring at us. (P9)

In addition to the challenging situation of listening to multiple medical professionals speaking about their child's treatment and future, it was not uncommon that parents did not know who these individuals were, or what their role in their child's management was:

There's like 10 to 15 doctors and specialists and nurses sitting there looking at you. It feels like an interview. There were, it was, so many people in the room that they didn’t even really, like, explain who does what. (P10)

Thus, while parents appreciated the reassurance and knowledge that was generally displayed by clinicians, they struggled with the processes associated with their child's comprehensive treatment. The acute recovery period post-surgery was often described as being particularly difficult, with a variety of challenges. Mothers struggled to achieve basic self-care tasks which, combined with caring for an infant who may still be being breast-fed, or needed to sleep upright because of their skull surgery, was a process they found physically exhausting and mentally overwhelming. This turmoil was compounded for single mothers who did not have the support of a partner, or for parents whose extended family and friends were unavailable, or lived elsewhere:

I found it really difficult. So obviously, I stayed next to her the entire time in a chair and because I was a single parent, like I didn't have the opportunity, I couldn't go and shower, like I wouldn't eat, I wouldn't, I wouldn't, wouldn't leave the, leave the chair, you know. That was hard. (P11)

Nonetheless, parents recognized that medical systems themselves are often under-resourced and generally made allowances for “why” support was not available, or processes were less than ideal. They acknowledged that many families were dealing with their child's medical crises that were perhaps, untreatable, and noted that those families needed health resources more than their family did. Nonetheless, participating in a process that was not professional left some parents hyper-vigilant about the treatment their child was receiving. As one mother stated:

I always assume that everything is wrong and I’ll have to double-check it. That's essentially how I, how I’ve had to operate. (P5)

Theme 3: Challenges and Strengths of Family Support Networks

Another common theme that arose during interviews related to those within the family's support network who wanted to provide support yet did not understand “craniosynostosis”—so were less able to meet the family's emotional needs. Although there was general sympathy provided by these personal supports, the lack of understanding about what the diagnosis was, or its ramifications, made it more difficult for others to relate:

nobody knew what we were talking about, so it was hard for people to understand what we were kind of going through (P2)

Parents spoke about how family and friends did not understand the complexity of decision making often required by parents and the extent of treatment required. Family members sometimes questioned the medical process itself, which parents were also often grappling with, with one mother feeling guilty about her choices when asked:

does he really need surgery? (P5)

Which, in addition to being questioned about whether her actions had contributed to her child's condition, only served to add to her distress:

others trying to find the blame like, was it my fault that, because I got COVID when I was pregnant, maybe that caused it. So yeah, I would say they weren't really, they weren't really any support. (P5)

Regardless of their actual response though, most parents understood that their family and friends generally meant well and often described them as being “amazing” support. This support network often simply listened to parent's fears and the details of their craniofacial journey, which helped parents deal with the stress associated with their family's situation:

they sort of didn’t know what to say or how to deal with it. They were just there for a soundboard more than anything, that we could just tell them what was going on. (P9)

This support, however, did not mitigate parental anxiety associated with their child's surgical treatment. Moreover, family members reacted differently. For example, one mother noted that her sister was very supportive, but her mother less so:

my mum was actually not very good, she got so freaked out about the fact that her grandchild was going to need surgery that I had to comfort her, instead of the other way around. (P8)

Interestingly, and perhaps highlighting cultural differences, the one parent in the current study who identified as European noted that her family was her primary source of emotional support:

my mum is one of 15, my [country] mother, so I had all her sisters, my seven aunts, all of them contacting me, all of them giving support, reassurance. So yeah, that's, that's what really got me through I would say. (P19)

Nevertheless, family and friends were invaluable from a practical perspective. The logistical arrangements in hospital are often challenging with parents needing, or wanting, to be by their child's side, particularly in the first few days after surgery. If there were siblings at home, the father would often be home caring for them, while the mother stayed at the hospital with their infant—particularly if the child was still being breast fed. Family members were able to provide support by relieving mothers so they could go for a walk, have a shower, or buy a coffee:

my older sister's very helpful with coming into the hospital… being across what's happening so she could relieve me so I could have a break, because my husband was looking after [our older child] back at home. So we had that support, mainly my older sister coming into the hospital, just to, you know, so you can go and get a meal or something. (P15)

Family members often provided different support functions, with “mums” mentioned as a source of emotional support by talking through events and problems, and sisters often providing the more practical assistance such as relief duties in hospital. Other families utilized grandparents to care for siblings while they were engaged at specialist appointments or during surgical hospital stays.

One mother noted that through the difficult times, friends were helpful:

mowed your lawns or bring you a casserole, because you’re dealing with kind of, crisis I guess, at the time. (P12)

Few families reported that the broader community was directly involved in their craniofacial journey, but noted they were supportive and accepting—which was all the family expected or wanted:

our local community's been lovely…. accepting, supportive and just… [child] is [child], like it's not… it's not even a thing and that's what we want from the community, as a family and for him, to just be able to kind of go about his life. (P1)

Theme 4: Absence of Psychological Support in the Clinical Journey

One aspect of clinical care that was consistently absent for families was psychological support. Parents were anxious, stressed and trying to cope with a condition that few had heard of. Regrettably, “the system” often did not provide psychological assistance, leaving families to deal with all the associated challenges and difficulties alone, or with whatever supports they could find themselves:

it was never going to be a pleasant time, I understand that. It was always going to be uncomfortable, and an anxious period of time, I, I do know that, but it, it was made worse by the fact that there was very limited support, nobody kind of, you didn't feel like anybody overly cared how you were going. (P11)

Notably, the overall pattern of interviews was similar in that parents outlined their unwavering commitment to their child's future well-being. They survived the diagnosis and treatment stages of their journey by dealing with each issue and problem as they arose in a practical way:

I wasn’t processing anything. I was dealing with the practical, nothing else. (P16)

Most spoke of how psychological support was not offered, but also that it was not something they were thinking of. Then, once the flurry of appointments had passed and life started to return to normal, the pressures of the previous months and years began to catch up with them. At this time, parents reflected that perhaps the process may have been less traumatic had the opportunity for psychological support been provided:

Definitely around psychological yeah that, absolutely lacking and so important I, I have found personally. That is, is, yeah that is … by far the, the thing that I think is missing from this approach, surgical approach and process. (P7)

Even with the confidence derived from their perception of their surgeon's capability, having someone to help them process their experience was a suggestion frequently raised by parents during interviews:

Unfortunately, we didn't have any, we had all the medical stuff, which was a huge relief for us but, you know, we didn't have any other support and we didn't know what, what to expect, I guess, psychologically, going forward and navigating that, was yeah, quite tricky, because, like I said, some of the things you think, oh, you know, am I going crazy? Is it silly to think this? I guess, just having someone to validate what we were feeling along the way would have been really helpful. (P13)

Sometimes, parents were offered generic “support” during conversations, but the specifics of what that might be or how to access it, were not explained:

I mean they, apart from saying that there were supports if we needed it, but again, we didn't know who to speak to, or who to ask for that. (P18)

Alternatively, the offer of support sometimes felt like a “tick box” exercise without any real concern for the family:

It felt tokenistic, that was what it felt like. It's like someone's gone ‘people in this situation should get some level of psychosocial support, so let's chuck the social worker down there and, um, we can tick that box. (P1)

Even within medical circles, some clinicians downplayed the impact of a craniosynostosis diagnosis which, while likely attempting to minimize parent's emotional distress, served only to magnify their anxiety when the extent of the required treatment became clearer at a later stage:

But our GP at the time really played it down. So she mentioned the word craniosynostosis and she goes “oh, but you know they might just have a really cute helmet on for a few months, and then that's it”. And then at that point I, like, I didn't think much of it, because she kind of played it all down and then, a week later, I got a text message from the hospital saying P9 (child) had an urgent referral for paediatrics. And at that point, that's when I started to freak out. (P9)

The complexity of how and when to offer support was further highlighted by one mother:

I didn't have anybody to help me unpack the grieving around things I thought would happen, that didn't happen. But I don't know that I knew that I could have asked for it either, so that doesn’t mean the support wasn't there, is if someone says, how are you tracking, you've just been through a pretty traumatic 12 or 18 months. Yeah, you know, I'm doing alright, because actually I don't want to relive it every time. (P12)

The tendency for families to get through the busy times by pushing through and simply focusing on specialist appointments and upcoming surgery was also identified. It was in the quieter times, when families did not have appointments as a distraction that it was suggested that psychological support be offered:

when there's diagnoses and surgeries we’re great, we’re on it, we’re good. But yeh, it's those in between times, um, that we probably should, you know, we tend to rely on each other probably a bit more, and family and things like that. But that's probably the sort of times when it's like, oh, you know, it, that, those sort of 3, 6 month markers would be good to have someone non-clinical maybe just touch base and be like, hey, how's it going? (P3)

Just as craniosynostosis is known as a lifelong condition, so too seems to be the psychological trauma for some parents. One mother, whose child was diagnosed more than 20 years ago, noted the extent of the psychological impact that craniosynostosis had on their family:

and it's only been this sort of, twentieth anniversary, where we both probably felt ready to sit and cry together about it, because you're trying to be strong for everybody all the time. (P12)

Similarly, another mother recounted a painful conversation with her child's surgeon who acknowledged that:

the kids are fine, they get over it, you know, it's, it's the parents… they never get over it.” But he says it with a smile on his face, and I know he's trying to be kind of reassuring and light hearted. But carrying trauma forever is not really something to smile about. (P19)

Discussion

The majority of families in the current study believed that the level of psychosocial support for families living with craniosynostosis, provided by the Australian healthcare system, is insufficient. On a personal level, many were forgiving of that fact, and simply thankful that their child was able to receive timely and quality treatment. Nonetheless, the experience of craniosynostosis is traumatic for parents and there is much room for improvement in order to ease their distress.

The experiences of parents in the current study align with previous findings that trust in clinicians is often formed through positive personal communication, with parents relying on knowledgeable and compassionate health professionals to mitigate stress and anxiety. ¹⁵ These emotional difficulties are further heightened when complex medical systems or bureaucratic processes complicate their craniofacial journey. ²⁵ Despite these emotional challenges, families’ personal support networks are often not well-informed, ²⁶ emphasizing the need for comprehensive formal support resources and psychological assistance to be made available to both families and, when necessary, their extended networks.

The current findings are also consistent with Brofenbrenner's19 work, as parents spoke about all levels of the ecological system impacting their experiences. Their children's development was affected not only by their own families and the ways they cope with adversity, but also by their interactions in the broader community and with health providers. In turn, societal influences such as the pandemic impacted parent's experiences, and also affected opportunities for those around them to offer support.

The first theme identified—communication and trust in clinical care—explores the emotional and psychological experiences parents undergo while interacting with healthcare professionals and how communication—whether positive or negative—impacts their sense of support and reassurance. Although parents struggled emotionally and often described their craniofacial experience in terms of trauma, their overwhelming goal was to obtain the best treatment possible for their child. Parents ignored their own physical and psychological needs, provided their child's needs were met. They appeared to frequently accept failures in the system on the basis that these were “noise” compared with their goal of having their child treated by the most knowledgeable and skilled clinicians possible. Although parents complained about the broader health system on many levels, when they spoke of surgeons, it was almost always positive.

In addition to medical assistance, surgeons provided support in varied ways, such as by being knowledgeable and showing compassion, empathy, and understanding. Some surgeons provided direct contact details and responded to questions around surgery quickly. At times, parents were offered meetings in the days prior to surgery which they believed were predominantly aimed at reassuring them about their child's imminent treatment and offering opportunities for last-minute questions. Other clinicians showed exemplary post-surgery care, providing support by responding promptly to wound or related medical concerns. Regrettably, however, experiences with clinicians from across Australia were highly variable.

The second theme generated—challenges in health system processes and communication—encapsulates the difficulties parents face with the administrative and communicative aspects of healthcare, such as inconsistent contact and the feeling of being let down by the system. It also includes their emotional response to these challenges, like increased anxiety and uncertainty, as well as the overwhelming nature of dealing with a fragmented healthcare system while navigating their child's medical journey.

Parental complaints often focused on the lack of regular timely communication, with parents seeking more continuity of care and follow-up. Given the timing of surgical treatment is often critical, and because there was often a lack of trust in how efficient or reliable the system was, parents felt it necessary to double-check medical notifications and proactively follow up on referrals. Parents became particularly anxious when contact within a promised time frame did not occur, and clinicians should be mindful of creating, and meeting, patient expectations. Parents also valued having consistent staffing so that they did not have to explain their medical situation multiple times, and could access immediate details of their child's condition or treatment without the need to seek out others. A number of parents mentioned that it would be invaluable to have one contact person who was: kind and supportive; had basic knowledge about craniosynostosis; understood how and where to access medical and psychosocial support information and, perhaps most importantly, how to navigate the health system.

In regard to patient support from the broader health system, many of these parental concerns are addressed in the ACPA Parameters of Care recommendations (ACPA 2024). These guidelines advocate that care coordination of children with craniosynostosis is conducted by teams of professionals from a range of disciplines that work within a coordinated system. Moreover, it is recommended that this team: includes a patient care coordinator; meets regularly to coordinate and collaborate on patient care; and has a mechanism for referral to and communication with, other professionals (ACPA, 2024). Regrettably, this best practice approach to patient care is implemented inconsistently across Australia, leading to considerable parental anxiety and uncertainty.

The third theme—challenges and strengths of family support networks—captures the complexities of parental experiences with their support network, highlighting both the emotional and practical support they receive from family and friends, as well as the challenges that arise when these support systems lack a clear understanding of craniosynostosis and its implications. It also reflects the varying types of support provided by different family members and the importance of having a responsive and empathetic network during such a challenging time.

Parents highlighted that family and friends often struggled to provide adequate emotional support, perhaps at least partly because they were unfamiliar with craniosynostosis. This led to the difficult situation whereby parents were required to explain complex, and often distressing, medical details which they themselves were often struggling to understand. This suggests that psychosocial information targeted toward family and friends, providing them with guidance on how to support families affected by craniosynostosis may be useful. In addition, parents noted that their extended family network was also affected psychologically and options for their support should also be considered.

The final theme—absence of psychological support in the clinical journey—focuses on the lack of psychological care or support for parents during and after the medical process, how that lack of support magnifies emotional stress, and the long-lasting psychological effects that remain unaddressed. It also emphasizes the need for validation, guidance, and practical support that could help parents process the trauma of caring for a child with craniosynostosis.

It was deemed important by parents that psychological support be part of the standard care provided by the health system and not offered on an ad hoc basis, due to the stigma that can still surround accessing psychological care. Ideally, this psychological input would be provided by an individual familiar with craniosynostosis and the treatment process, and begin when the child is diagnosed, as the wait to surgery is often overwhelming for families. Given parents are attending multiple specialist appointments in already busy lives, these psychological sessions could be conducted online.

Crucially, a psychologist familiar with craniosynostosis would be able to preempt and address some of the emotions and experiences that parents of children with craniosynostosis experience (eg, changes in the appearance of their child post-surgery). They could help parents process the grief associated with the loss of a healthy baby, the guilt that their actions may have contributed to the condition, and their fears for their child's future. These feelings need to be validated and normalized. Caring for a child with craniosynostosis involves a significant personal journey for all members of the family that is not currently factored into the concept of holistic patient care in Australia. Tailored strategies and self-care techniques should be developed for all family members to help them cope with stressors. Moreover, partners often process and manage events differently (eg, one parent is seen as the detailed one and so is tasked with research and decision-making) which places strain on relationships. Lastly, parents should be given strategies to help them explain their child's “story” to them and to assist them in whatever ways are needed as they develop and start to interact with others. When parents do not wish to speak to a psychologist, alternative pathways to access psychosocial support should be provided (eg, online peer support groups).

Regrettably, few non-Australian-born families participated, limiting our ability to determine culturally appropriate avenues for psychosocial support. Nonetheless, psychosocial support resources should be developed for these families. Recruitment was conducted via the network of a single national craniofacial support organization; however, recruiting more widely (eg, via state hospitals) may have resulted in greater paternal involvement and a cohort with differing perspectives. Future research should also examine the experiences and needs of the child with craniosynostosis and their siblings in order to determine their specific support needs.

The current paper examines the psychosocial support needs and experiences of Australian parents whose child has been diagnosed with craniosynostosis. It highlights the importance of factors such as communication style, understanding health clinicians, efficient medical systems, social support offered by personal networks, and psychological assistance provided by mental health experts. This builds on research published using this same cohort which identified issues related to the acquisition of knowledge. For example, improved information quality and quantity, treatment specifics, and evidence about their child's potential functioning and long-term outcomes. ²⁰ Overall, parents believe there is a lack of psychosocial support provided by the Australian healthcare system and that psychological services to families should be part of standard, family-centered care. Parents also highlighted that psychosocial support should be available to all family members where needed.