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Journal of Pediatric Psychology logoLink to Journal of Pediatric Psychology
. 2025 Jul 17;51(3):229–238. doi: 10.1093/jpepsy/jsaf054

The Visible Difference Parenting Toolkit: development of an ACT-based intervention to improve the well-being of parents and caregivers of children with appearance-affecting conditions and injuries

Maia Thornton 1,✉, Heidi Williamson 2, Toity Deave 3, James Kiff 4, Diana Harcourt 5
PMCID: PMC13016643  PMID: 40673948

Abstract

Objectives

Caregivers of children with appearance-affecting conditions or injuries can experience common psychosocial challenges, regardless of the cause or nature of their child’s visible difference. Despite these common challenges, there is a lack of evidence-based cross-condition support for caregivers of children with visible differences.

Methods

A self-guided acceptance and commitment therapy-based e-book intervention was developed utilizing a Participatory Action Research approach. Twenty-two caregivers of children with a range of visible differences reviewed the full pilot e-book intervention and responded to an online acceptability survey.

Results

While several changes aimed at increasing the accessibility of the intervention materials were discussed, overall the feedback suggested that The Visible Difference Parenting Toolkit addressed an unmet support need. Both the content and the format of the intervention were found to be acceptable by parents, with ehealth Impact Questionnaire scores of >80. Participants recommended specific changes related to accessibility including adding features such as hyperlinks and a search bar to enable users to navigate the e-book.

Conclusions

Caregivers reported that the content of The Visible Difference Parenting Toolkit was relevant to their lived experiences of caring for a child with a visible difference. Parents also reported that the presentation and format of The Visible Difference Parenting Toolkit was clear and accessible. The intervention addresses a previously unmet support need and is an acceptable intervention for caregivers of children with a visible difference.

Keywords: caregiver functioning, parent psychosocial functioning, chronic illness, psychosocial intervention

A visible difference is defined as an appearance which differs from the “norm” (Rumsey & Harcourt, 2004) and can be caused by a wide range of health conditions (e.g., cleft lip and/or palate), acquired injuries (e.g., burns), skin conditions (e.g., eczema, vitiligo), illness or associated treatments (e.g., surgical scarring, chemotherapy). In an appearance-focused society, an attractive external appearance which adheres to narrow appearance norms is considered ideal (Swami, 2012). An altered or different appearance of any kind that conflicts with narrow appearance norms can present significant psychosocial challenges for the affected individual.

There is considerable evidence to suggest that children and young people living with a visible difference report common pervasive psychological difficulties, regardless of the nature, cause or extent of their visible differences (Gee et al., 2020; Jenkinson et al., 2015). These include negative self-perceptions, poor body image, low self-esteem, fear of negative evaluation, and anxiety (Waite et al., 2024). Furthermore, parents and caregivers can experience significant psychosocial challenges (Thornton et al., 2021). These can include emotional challenges such as shock, stress, or low mood following their child’s diagnosis (Stock et al., 2019), injury (Heath et al., 2018), or illness (Williamson et al., 2010). Parents may feel guilty about the cause of the visible difference (Hawkins et al., 2019) or anxious about actual or anticipated social stigma, such as unwanted attention (e.g., comments, questions), teasing or bullying or social exclusion (Ablett & Thompson, 2016; Hlongwa & Rispel, 2018). Parents also describe worries about how to communicate with their child about their condition or injury, such as how to start conversations about appearance in a sensitive and timely way (Zelihić et al., 2021). Finally, parents may experience other practical caregiving challenges such as treatment decision making (Nelson et al., 2012), attending hospital appointments (Billaud Feragen et al., 2019; Hlongwa & Rispel, 2018), and carrying out treatment regimens (Rork et al., 2012). Furthermore, increased distress and reduced quality of life for caregivers of children with long-term health conditions has been associated with increased distress and reduced quality of life in affected children (e.g., Driscoll et al., 2018; January et al., 2019). Therefore, there is a considerable need for psychosocial support to support the well-being of parents and children within the family unit.

Existing research also suggests there are common experiences and support needs that cut across different appearance-affecting conditions and injuries, demonstrating a need for cross-condition support. A qualitative study with 20 parents and 11 health professionals found that parents expressed concerns about similar challenges (e.g., parents managing their own reactions to their child’s visible difference, social challenges, parent–child communication) regardless of the cause or nature of their child’s visible difference (Thornton et al., 2021). Additionally, a cross-sectional survey study with 209 parents of children identified cross-condition risk (e.g., parent-reported teasing) and protective factors (e.g., self-compassion, open parent–child communication) for psychological distress (Thornton et al., 2024). Cross-condition support for parents of children with a visible difference could be a cost-effective and evidence-based approach to meeting these support needs, but it remains scarce.

A systematic review of interventions aimed at improving psychosocial outcomes for parents of children with skin conditions found moderate to strong evidence for the effectiveness of several interventions, including the Fordyce Happiness Program, the Triple P Parenting Program, and the Early Family Intervention Program (Costa et al., 2021). However, the methodological quality of the studies in this review varied greatly, with six reported as weak. Also, these interventions largely focus on skills training for symptom management, rather than psychosocial support for the parents themselves or support which specifically addresses the child’s appearance difference.

A condition-specific example of parent-focused support is the psychoeducational website (www.supportingchildrenwithburns.co.uk), aimed at improving the psychosocial well-being of parents of children with burn injuries (Heath et al., 2019). The “Supporting Children with Burns” website provides content on stress management for parents including mindfulness techniques, self-care strategies, managing sleep difficulties, and managing avoidance. The website also includes quotes and stories from other parents and carers to demonstrate that others share similar experiences and provide advice to website users. This website was found to be acceptable to both parents and professionals, highlighting the importance of support that provides guidance, while encouraging parents to prioritize their own well-being (Heath et al., 2020). Although findings indicate that this intervention is acceptable, the website has not been evaluated for effectiveness. Furthermore, as with this example, the existing parent support remains condition-specific, with limited reach and benefit for the wider visible difference population.

Given the challenges faced by parents and the lack of evidence-based support available, it is important to consider appropriate theoretical models for support development. Previously, cognitive behavioral therapy (CBT) and social interaction skills training were the most commonly used approaches to offering support to people impacted by visible differences (Harcourt et al., 2018; Waite et al., 2024). Despite this, there has been limited evidence to support the effectiveness of CBT and social interaction skills training interventions for individuals with visible differences and their families (Costa et al., 2021; Jenkinson et al., 2015; Waite et al., 2024). More recently, attention has shifted to the use of acceptance and commitment therapy (ACT), a third-wave transdiagnostic cognitive-behavioral approach which encourages individuals to build an awareness of their personal values and commit to living in accordance with them (Hayes et al., 2006). ACT teaches skills to manage difficult thoughts and feelings that may arise and prevent individuals from taking valued action. ACT targets six core psychological processes (acceptance, cognitive defusion, being present, self-as-context, values, committed action) with the overall aim of increasing psychological flexibility (the ability to orient to the present moment with openness and awareness and behave in accordance with one’s values, Hayes et al., 2006).

Unlike CBT, ACT does not focus on altering thoughts but encouraging individuals to practice acceptance of difficult internal experiences and use strategies to live in accordance with personal values (Luoma et al., 2007). For individuals with a visible difference, upsetting thoughts and feelings (e.g., concerns about staring or other unwanted attention) may reflect their reality (Zucchelli et al., 2018). ACT does not frame these cognitions as maladaptive or dysfunctional but focuses on the individual’s relationship to these thoughts. Therefore, ACT does not target thoughts directly and so individuals are not required to alter their cognitions or self-evaluations related to their appearance (Zucchelli et al., 2018), but rather develop psychological flexibility to hold difficult thoughts and feelings at a distance, and ultimately promote behavior aligned with values.

ACT has been utilized as a therapeutic model to develop psychosocial support for adults with visible differences (Shepherd et al., 2019; Zucchelli et al., 2021). A feasibility study of an ACT-based prototype mobile app indicated good acceptability (Zucchelli et al., 2021). Additionally, ACT has been demonstrated to be an acceptable approach for supporting parents of children with long-term health conditions including inflammatory bowel disease (Kohut et al., 2021), cerebral palsy (McMillan et al., 2022), and chronic pain (Wallace et al., 2016). Given this evidence, ACT was deemed to be a suitable therapeutic approach for a psychosocial intervention for parents of children with visible differences.

The present study aimed to develop an evidence-based cross-condition intervention utilizing an ACT approach to support the psychosocial well-being of parents and carers of children with a visible difference of any sort. The intervention aimed to improve well-being by promoting psychological flexibility and reducing parent stress, anxiety, and low mood. Additionally, this study aimed to assess acceptability of this intervention. The assessment of acceptability of an intervention is critical to successful implementation and thus overall effectiveness (Sekhon et al., 2017). Therefore, it was important to understand whether the format and content of the intervention materials are acceptable to the target population.

Materials and methods

Intervention material development

Participatory action research (PAR) is a collaborative and self-reflective approach that involves members of the public who have lived experience of the topic under investigation (Baum et al., 2006). The PAR approach advocates for power in research to be shared between the researcher and lived experience representatives, with the aim that they become partners in the research process. Involvement in research can elicit a sense of empowerment in parents, as well as increased confidence and the opportunity to learn new skills (Shen et al., 2017).

The research team identified important psychosocial constructs to include within the content and drafted text. These key constructs included psychological flexibility, self-compassion, parent–child communication, appearance-related distress, managing social challenges, and finding information and support. Five parent representatives and three clinical advisors reviewed the draft content and format of the intervention. Following this, the parent representatives and clinical advisors attended two online group workshops to provide feedback on the iterative changes. The workshop discussions involved attendees providing verbal feedback on the draft content and format of the intervention. They were asked questions about whether the content covered appropriate topics, whether the language was accessible and clear, and the usability of the format. Parent representatives and clinical advisors were also asked for suggestions for any additional topics that should be included. The research team then made suggested changes, and these were reviewed by the parent representatives and clinical advisors prior to the next workshop. The intervention materials resulting from these workshops were presented in an e-book format, “The Visible Difference Parenting Toolkit.”

“The Visible Difference Parenting Toolkit” is a self-guided e-book which, alongside the PAR approach outlined above, was developed in accordance with the Medical Research Council (Skivington et al., 2021) guidelines for the development of new interventions based on evidence and programme theory (key components of the intervention, how they interact, and the mechanisms of the intervention). In line with this guidance, the intervention content was developed by drawing on existing evidence and theory regarding the lived experiences of those with visible differences (e.g., Billaud Feragen et al., 2019; Heath et al., 2018; Thornton et al., 2021, 2024; Zelihić et al., 2021), the appropriateness of ACT for a visible difference population (Zucchelli et al., 2018), and the acceptability of ACT for parents and carers of children with long-term health conditions (e.g., Kohut et al., 2021).

The intervention materials were divided into two main sections: (1) The core principles of ACT and skills for managing difficult thoughts and feelings, known as “helper skills”; (2) advice, guidance, and exercises related to key constructs identified in existing parenting and visible difference research (e.g., managing social challenges, communication, and finding the right support). The six core processes of ACT used to inform the content of the intervention were as follows: (1) experiential acceptance, (2) cognitive defusion (ability to detach or not “fuse” with thoughts, images, and memories); (3) being present (ability to consciously and flexibly pay attention to what is happening in the present); (4) values (chosen desired qualities or psychological action); (5) committed action (behavior in accordance with an individual’s values); (6) self-as-context (ability to observe cognitions, emotions, behavior; Harris, 2006).

The Visible Difference Parenting Toolkit provided to participants before they completed the online survey to assess acceptability was presented in a PDF format. The PDF included the textual content, which had been developed and refined through the PAR process described above. The PDF also included illustrations that complemented the information provided. The content was a combination of information and interactive activities. The ACT-based content included metaphors developed by Russ Harris, which have been shared in the public domain (e.g., passengers on a bus; Harris, 2019). Several activities (e.g., breathing exercises) were adapted from the “ACT Now” training materials, designed to equip healthcare professionals with skills to deliver ACT-based support to individuals with visible differences (Zucchelli et al., 2023). Furthermore, some content was informed by existing online information and support provided by charitable organizations (Explain, Reassure, Distract; Changing Faces, 2020; bullying and cyberbullying, Bullying UK, 2021), and interventions drawn from the broader pediatric health literature (Storytelling exercise; Akard et al., 2015).

Design

Acceptability testing was conducted on the draft intervention materials. Acceptability data were collected using an online survey design which collected quantitative data through self-report measures and qualitative data through open-ended questions. The design of the acceptability survey was informed by the Theoretical Framework of Acceptability (TFA; Sekhon et al., 2017).

Several domains of the TFA were mapped onto the selected outcome measures of the online survey. These domains were as follows: (1) self-efficacy (the participant’s confidence that they can perform the behavior required to participate in the intervention); (2) ethicality (the extent to which the intervention is a good fit with the individual’s values; (3) intervention coherence (the extent to which the participant understands the intervention and how it works); (4) perceived effectiveness (the extent to which the intervention is perceived as likely to achieve its purpose); and (5) burden (the perceived effort required to participate in an intervention).

Online survey materials

eHealth Impact Questionnaire

The acceptability survey included two subscales (1. confidence and identification; 2. presentation of information) adapted from part two of the eHealth Impact Questionnaire (eHIQ; Kelly et al., 2015). The eHIQ has previously been utilized in a study assessing the acceptability of a website for parents of children with burn injuries (Heath et al., 2019), suggesting the scale would be appropriate for the current study. The confidence and identification subscale included 9 items rated on a 5-point Likert scale from strongly disagree (1) to strongly agree (5). Example items include: “The people who have contributed to The Visible Difference Parenting Toolkit understand what is important to me and my family” and “The Visible Difference Parenting Toolkit gives me more confidence to support my child”. This subscale demonstrated good reliability (α = .87). The information and presentation subscale included 7 items rated on a 5-point Likert scale from strongly disagree (1) to strongly agree (5). Example items included “I understood the exercises in The Visible Difference Parenting Toolkit” and “I trust the information in The Visible Difference Parenting Toolkit”. This subscale also demonstrated good reliability (α = .86). Possible overall scores on each subscale ranged from 0 to 100, with higher scores indicating more positive experiences (Kelly et al., 2015). The subscales of the eHIQ mapped onto the self-efficacy, ethicality, intervention coherence, and perceived effectiveness domains of the TFA.

User engagement

The survey included eight questions about intervention engagement. Participants were asked to provide an approximation of the total time they had spent viewing the materials, which sections they engaged with, and which they had found the most helpful. They were also asked to indicate how often they might use the intervention materials if they were freely available. To assess the “burden” domain of the TFA, participants were asked to provide feedback on the length of the intervention materials.

National Health Service Friends and Family Test

Items from the National Health Service (NHS) Friends and Family Test (FFT; NHS, 2013) were included to gain an understanding of parents’ overall experience of the intervention and whether they would recommend it to others. These items were “Overall, how was your experience of The Visible Difference Parenting Toolkit?” and “How likely are you to recommend The Visible Difference Parenting Toolkit to friends and family if they need support?”. Both items were rated on a 7-item Likert scale from don’t know (0) to very good (6). These items mapped onto several domains of the TFA: “affective attitude” and “perceived effectiveness”.

Open-ended questions

Open-ended questions (e.g., Is there anything about The Visible Difference Parenting Toolkit that you think could be improved?) were included to provide parents with a space to elaborate on their answers and share their experiences of using the intervention. Open-ended questions enabled participants to elaborate on their experiences of using the toolkit, provide context or greater depth to their answers, and raise any issues they felt were not covered elsewhere in the survey (O’Cathain & Thomas, 2004).

Participants

Any parent/caregiver (adult with caring or guardianship responsibilities) was eligible to take part if they cared for a child (aged 0–18 years old) with an appearance-affecting condition or injury, an understanding of written English sufficient to read the intervention materials and complete the online survey and were based in the UK.

A group of national UK-based charitable organizations who support individuals with visible difference, known as the Appearance Collective, were contacted via email and asked to advertise the research to their members. The research advert was also posted on the Centre for Appearance Research social media pages and participant pool. Twenty-two participants took part in the acceptability survey. All identified as a woman and their child’s mother. The mean age of participants was 37.41 years (SD = 7.33), the mean age of their child with a visible difference was 8.25 years (SD = 5.31). See Table 1 for a summary of demographic information.

Table 1.

Demographic information of parent participants.

Mean SD
Parent age 37.41 7.33
Child age 8.25 5.31
N %
Parent gender
 Woman 22 100
 Man 0 0
Child gender
 Girl 14 63.6
 Boy 8 36.4
Relationship to child
 Mother 22 100
 Father 0 0
Ethnicity
 Asian Chinese 1 4.5
 White British 9 40.9
 White English 4 18.2
 White European 3 13.6
 White Irish 1 4.5
 White Other 1 4.5
 Scottish 3 13.6
Child condition/injury
 Alopecia 3 13.6
 Birthmark 9 40.9
 White Burn injury 1 4.5
 Craniofacial condition 4 18.2
 Limb difference 4 18.2
 Skin condition 1 4.5
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Procedure

This study received institutional ethical approval from University of the West of England Research Ethics Committee (approval code: HAS.21.05.148). Parents who expressed an interest in participating were contacted via email with a copy of the participant information sheet and consent form. After providing written informed consent, participants were provided with a copy of The Visible Difference Parenting Toolkit and a link to the online acceptability survey. Parents were asked to spend time reading and reviewing the materials and then complete the survey. Once participants clicked on the link to the survey hosted on Qualtrics (a secure online data collection platform), they were guided through a series of multiple choice and open-ended questions regarding their experience of using The Visible Difference Parenting Toolkit. If a parent had not completed the feedback survey within one week of receiving the materials, they were sent a reminder email. At the end of the survey, parents were thanked for their contribution and given the opportunity to enter a prize draw to win a £50 shopping voucher.

Data analysis

Quantitative data were analyzed using SPSS version 28. Descriptive statistics were calculated from each subscale of the eHIQ. Frequencies were calculated for the FFT and user engagement data. Subscale totals and means were calculated using the eHIQ scoring guidelines (Kelly et al., 2015). The existing health literature has quoted a cut-off for a positive score for the eHIQ subscales: ≥65 out of a maximum of 100 (Talboom-Kamp et al., 2020).

The qualitative data were analyzed using deductive content analysis (Elo & Kyngäs, 2008), utilizing the eHIQ subscales, “Confidence and identification” and “Information and presentation”, as a priori main categories. Following the development of the categorization matrix using these subscales, the data were reviewed and coded into subcategories under these main categories. All the data were coded by the first author and then discussed with the second and fifth authors. Any discrepancies were discussed and re-coded if necessary.

Results

eHealth Impact Questionnaire

After reviewing the intervention materials, parents responded to questions from the eHIQ questionnaire. The mean score for the “Confidence and identification subscale” was 81.94 (SD = 12.27), and for the “Information and presentation” subscale was 86.85 (SD = 12.68). Cut-off scores for good acceptability using the eHIQ ≥ 65 out of a maximum (Talboom-Kamp et al., 2020).

Friends and Family Test

Overall, 96% of participants rated their overall experience as “Very good” (n = 14, 64%) or “Good” (n = 7, 32%). In addition, 78% (n = 17) reported that they would be “Very likely” to recommend The Visible Difference Parenting Toolkit to other parents of a child with a visible difference, while 18% (n = 4) reported that they would be “Likely” to do so.

User engagement

User engagement data provided information on how parents were using the toolkit and context for understanding which sections might be most helpful or relevant, as well as the amount of time spent on the intervention.

Participants reported engaging with the intervention materials for a mean total duration of 54.32 min (SD = 51.14, range = 15–240). A summary of participant engagement with the different sections of the intervention materials can be found in Table 2. Ten participants (45%) reported that they found the content related to “Talking about your child’s condition or injury” to be the most helpful section of the intervention. Eleven (50%) reported actively engaging in the activities and exercises. Ten (45%) stated that they would be most likely to use the intervention materials “as and when” they needed them or in response to a specific challenge, whereas others felt that they would use them more regularly: monthly (n = 3, 14%) or weekly (n = 4, 18%). Three parents shared that they wished that they had had access to the materials when their child was younger, as they would have used them more at this time. Most parents reported that the length of the materials was “Just right” (n = 15, 68%); however, several stated that the materials were “Too long” (n = 7, 32%).

Table 2.

Parent-report engagement with intervention materials.

Intervention section topic Parent-reported engagement, N (%)
Introduction (why support parents?) 18 (82)
What are difficult thoughts and feelings? 20 (91)
Helper skills 18 (82)
Being present 17 (77)
Knowing your values 19 (86)
Talking about your child’s condition or injury 21 (95)
Other people’s reactions 21 (95)
Staying informed 17 (77)
Finding the right support 19 (86)
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N = no. of parents viewed each section.

Content analysis

Two categories were identified in the qualitative data: (1) confidence and identification and (2) Coherence, presentation, and layout. A “following a thread” approach was used to integrate the findings from the quantitative and qualitative data sets (Moran-Ellis et al., 2006). This approach first requires analysis of the quantitative and qualitative data separately. Next, key themes or questions (e.g., “Do parents understand the content of the intervention?”) were considered in the context of the quantitative data and then followed across into the qualitative data to determine whether more information can be provided across the data sets. Categories and subcategories with exemplar quotes can be seen in Table 3.

Table 3.

Content analysis categories and subcategories with exemplar quotes.

Category Sub-category Exemplar quote
Confidence and identification

  • Identify with content

  • Confident/enjoyed engaging

  • “It was well structured and was definitely in tune to the thoughts that parents may have”

  • “It was good to realise that some of the methods we’ve used are suggested like openly talking about things in a natural way to ‘normalise’ her condition and talk about how other people might see her as different.”

  • “This would be a favourite, long time resource for us”

  • “It was very informative. I enjoyed looking and trying out the exercises. It made me think of things in a different way.”
Coherence, presentation, and layout

  • Intervention coherence

  • Presentation

  • “I understood the whole toolkit very good resource.”

  • “I thought it was completely at the right level—no jargon or wording I didn’t understand and also not condescending.”

  • “At the very beginning the document talks about ‘carrying’ things for my child. I think this meant carrying emotions, but I struggled a bit with this language and it was a little off-putting so close to the beginning of the document”

  • “Layout good—not overwhelmingly volume of text on each page.”

  • “It was a little long but that is only a very minor thing.”

  • “It’s very long, I had to review in multiples session, but I got so much out of it!”

  • “I would love a paper copy if and when available please.”
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Confidence and identification

All parents within this sample (n = 22) discussed the extent to which they found the content of the intervention material to be relevant and identified with the topics. Ten provided positive feedback on the topics covered and felt that the intervention provided comprehensive support to parents. Nine reported that the content closely reflected their own experiences of caring for a child with a visible difference and that the information and exercises were relevant to their experiences, past and present. Of these parents, six also felt the materials would be most beneficial early in a parent’s journey (e.g., after a child was born with a congenital condition or immediately following an acquired appearance difference). Two parents also shared their continued need for support later in their child’s life.

Coherence, presentation and layout

Most parents (n = 18) also discussed the coherence, presentation, and layout of the intervention materials. Thirteen reported that they understood the content (e.g., language, sentence structure). Eleven identified no problems with comprehension and stated that the content was clear and well explained. However, two parents described difficulties fully understanding some of the metaphors used to explain ACT processes (e.g., the “passengers on a bus” which is a commonly used metaphor in ACT). Two parents stated that the use of illustrations and color was eye-catching and helped to balance the amount of text on the page.

Some parents (n = 9) commented on the length and format of the materials. Five stated that some sections were too long and could be condensed, while four felt that the length of the materials was appropriate and that they benefited from the amount of information included. Four parents would have liked the option of having the materials in a physical printed format, rather than being digital only. One parent also suggested that, due to the therapeutic nature of the content, it might be helpful to have more human interaction, such as an audio recording of someone reading the materials.

Discussion

This study aimed to develop and assess the acceptability of The Visible Difference Parenting Toolkit, a self-guided ACT-based intervention for parents and caregivers of children with a visible difference. The study employed an online survey design to assess intervention acceptability. User-reported data indicated a high level of engagement with the different sections of the intervention. Participants reported high mean scores on measures relating to identification with the content and confidence using the materials. Parents’ scores on information and presentation also suggested that they found the content to be clear and well presented. The data from open-ended questions provided greater detail regarding participants’ experiences, included clarification on content that they struggled to understand, and allowed participants to elaborate on opinions about length and format of the intervention. These findings and the implications for intervention development will be discussed below.

Confidence and identification

Participants reported a mean score of 81.94 out of a maximum of 100 on the confidence and identification subscale of the eHIQ. This suggests that parents identified strongly with the content and felt confident in their ability to support their child after viewing the materials. These findings align with several of the domains of TFA (Sekhon et al., 2017). Firstly, parents expressed in both the quantitative and qualitative data that they felt the intervention materials would be helpful to themselves and other families. Based on their experience of viewing the materials, they believed they could be effective. This aligns with the TFA construct of “perceived effectiveness” (Sekhon et al., 2017). Secondly, parents reported feeling confident in their ability to support their child. This aligns with the TFA construct of “self-efficacy” (Sekhon et al., 2017). Existing research with parents with a range of visible differences has found that parenting self-efficacy can be a protective factor against psychological distress (Thornton et al., 2024). This suggests that the intervention content may be effective in supporting parent well-being. These findings provide important insight into the acceptability of The Visible Difference Parenting Toolkit among this group and suggest that similar content could be appropriate for future intervention development. However, on the basis of this study, we cannot draw firm conclusions about the effectiveness of the intervention.

The “Confidence and identification” subscale asked parents to reflect on whether the content of the intervention aligned with what is important to them and their family, i.e., their values. This is related to the TFA construct of “ethicality”, defined as “the extent to which the intervention has good fit with an individual’s value system” (Sekhon et al., 2017, p. 8). The concepts of values and value-based action are at the core of ACT (Hayes et al., 2006). This suggests that parents closely identified with the intervention content, which asked them to reflect on their values, and provides further support for ACT as an appropriate therapeutic approach for this population. Therefore, future interventions aimed at this parent population could adopt a similar approach.

Qualitative data from open-ended questions also indicated that six parents would have welcomed the intervention materials at the beginning of their journey with their child’s visible difference. This supports condition-specific literature with both mothers and fathers (e.g., Heath et al., 2018; Stock & Rumsey, 2015), which indicates that parents are particularly in need of psychosocial support in the early days of their child’s condition or injury. This finding has important implications for future intervention development and practice, suggesting that early intervention may be beneficial for supporting parent well-being. Further work to explore the effectiveness of the intervention in parents of children of different ages, or varying times since their child acquired their visible difference, would be valuable to better understand whether there is a particular age or stage during which the intervention is most effective.

Information and presentation

Parents reported a mean score of 86.85 out of a maximum 100 on the information and presentation subscale of the eHIQ. Overall, parents felt the presentation of the content of the intervention was suitable. These findings align with the TFA component “intervention coherence” defined as “the extent to which the participant understands the intervention, and the way the intervention works” (Sekhon et al., 2017, p. 9). The quantitative and qualitative data indicated that most parents felt that the content of the intervention was clear and easy to understand, with only two parents reporting difficulty in understanding some of the metaphors used to illustrate ACT concepts. Qualitative data indicating that some parents had difficulties with comprehension of the metaphors suggests that this content could benefit from further review and refinement alongside input from lived experience representatives to ensure that the content is relatable and easier to understand. Future use of the ACT model in intervention development should ensure that metaphors used are easy to comprehend and apply.

Participants also provided feedback on the length of the intervention materials. Seven reported that the materials were “too long”, while 15 reported that the length was “just right.” This split in feedback was also observed in the qualitative data, with five participants reporting concerns about the length and four stating that the materials were the right length. All acknowledged that although there was a lot of information in the materials, they felt the information was important to include and that they benefited from engaging with it. This feedback aligns with the “burden” within the TFA (Sekhon et al., 2017). This component considers the effort (e.g., time, energy) of engaging in an intervention. In the present study, the majority of parents reported that they would use the materials in response to particular challenges, as and when they needed support. Edits to allow parents to more easily find specific topics (e.g., search bar, hyperlinks) and dip in and out of the intervention materials could reduce the burden (e.g., time and effort) of engagement, while continuing to provide parents with valuable information. Qualitative data also indicated that parents would like a paper copy to be available. These preferences will inform the future development and dissemination of The Visible Difference Parenting Toolkit. This also suggests that future interventions developed for this population should consider presenting content in a variety of formats.

Overall experience and engagement

Using the NHS FFT, all of the participants reported that overall, they either had a “Good” or “Very good” experience engaging with the intervention materials and would either be “Likely” or “Very likely” to recommend them to another parent of a child with a visible difference. These findings suggest that the intervention materials were acceptable to parents in the present study and closely reflect those of previous acceptability testing of an evidence-informed website for parents of children with burn injuries (Heath et al., 2019).

Participants reported high levels of engagement with the intervention materials. They were not instructed to read the entire intervention or engage with each section, suggesting that this engagement was guided by their own interest and free choice. Many identified the sections on “Talking about your child’s condition or injury” to be most helpful. Recent qualitative studies have found that raising appearance-focused discussions is a primary concern of parents of children with a visible difference (Feragen et al., 2022; Zelihić et al., 2021). Furthermore, a recent cross-condition survey study with 209 parents found that good parent–child communication about their child’s condition could be a protective factor against parent psychological distress (Thornton et al., 2024). The user-reported activity in the current study further supports the evidence that communication about visible difference is a significant concern for parents. To the authors’ knowledge, this is the first evidence-informed parent resource which directly focuses on talking to their child about their visible difference. Consequently, the present intervention materials address a previously unmet support need for parents of children with a visible difference.

Limitations

The present sample may not be typical of those who may require psychosocial support, as parents were self-selecting and volunteered to review the intervention materials. For example, the mean age of children was 8.25 years (SD: 5.31 years) and some of these parents had been living with their child’s condition for several years. Within their responses to the open-ended questions qualitative data, they suggested that this kind of support may be more appropriate when the child is younger or immediately after the visible difference is acquired.

Furthermore, all participants in the present study identified as women and the child’s mother. Most samples in parenting research in the visible difference field have an overrepresentation of mothers (e.g., Heath et al., 2018; Hlongwa & Rispel, 2018; Koot et al., 2000; Razera et al., 2017). This is also true of parenting research more broadly (e.g., Macdonald et al., 2010). Research from the visible difference field (Stock & Costa, 2020) and the broader literature (Jia et al., 2016) has illustrated that men and women have different coping strategies in response to parenting challenges. This has important implications for intervention development. Although the data collected in the present study provides important insights into the acceptability of the intervention, this may not be generalizable to all caregivers. Future research should aim to conduct further acceptability testing and evaluation of the effectiveness of the intervention in a sample representing a broader range of caregivers.

The majority of the sample reported their ethnicity as White. The limited research from non-Western cultures has demonstrated variation in the experiences of parents of children with a visible difference (e.g., differences in causal beliefs, Olasoji et al., 2007). Consequently, it is important that future research includes parents and families from a wider range of ethnicities. This would provide insight into the experiences of parents from a variety of radicalized groups and acceptability of The Visible Difference Parenting Toolkit to parents from non-White radicalized groups.

Due to the self-administered nature of the present intervention, parents varied in their interactions with the intervention materials. The data indicated a large range of viewing times (15–240 min), which suggests parents may have had varying levels of exposure to the intervention sections. Existing literature exploring psychosocial intervention implementation has discussed a phenomenon called a “dose response”, wherein greater exposure to the intervention content is associated with improvement in outcomes. For example, the dose response has been found in an RCT exploring the effectiveness of an ACT-based mobile phone intervention (Mattila et al., 2016), where an increased number of completed sessions was associated with greater improvements in psychological flexibility. Consequently, any future work to test the effectiveness of the intervention materials should include clear guidance about how to use the intervention. Data should also be collected about participant engagement to monitor for differences relating to a dose response.

Conclusion

The present study assessed the feasibility and acceptability of a self-administered ACT-based intervention for parents and caregivers of children with a visible difference. Participants reported that its content resonated with their lived experiences of caring for a child with a visible difference, and materials were in line with their values. Most found the information easy to understand and clearly presented. However, some had concerns about the length of the intervention and felt that further refinement of the design of the materials would reduce potential burden or costs (e.g., time and energy) of engaging with the intervention, and increase benefits. Further acceptability testing with a broader range of caregivers would be beneficial, as well as a full evaluation of the effectiveness of The Visible Difference Parenting Toolkit.

Acknowledgments

We would like to thank all the organizations who supported the recruitment of the study. We also thank all the parents who took part, for giving their time and for sharing their experiences with us.

Contributor Information

Maia Thornton, Centre for Appearance Research, School of Social Sciences, University of the West of England, Bristol, United Kingdom.

Heidi Williamson, Centre for Appearance Research, School of Social Sciences, University of the West of England, Bristol, United Kingdom.

Toity Deave, Centre for Academic Child Health, School of Health and Social Wellbeing, University of the West of England, Bristol, United Kingdom.

James Kiff, Outlook Service, Clinical Health Psychology, Southmead Hospital, Bristol, United Kingdom.

Diana Harcourt, Centre for Appearance Research, School of Social Sciences, University of the West of England, Bristol, United Kingdom.

Data availability

The data underlying this article cannot be shared publicly due to the need to protect the confidentiality of the participants.

Author contributions

Maia Thornton (Conceptualization [lead], Data curation [lead], Formal analysis [lead], Investigation [lead], Methodology [lead], Project administration [lead], Writing—original draft [lead], Writing—review & editing [lead]), Heidi Williamson (Conceptualization [supporting], Data curation [supporting], Formal analysis [supporting], Funding acquisition [lead], Methodology [supporting], Resources [supporting], Supervision [lead], Writing—original draft [supporting], Writing—review & editing [supporting]), Toity Deave (Methodology [supporting], Supervision [supporting], Writing—original draft [supporting], Writing—review & editing [supporting]), James Kiff (Methodology [supporting], Supervision [supporting], Writing—original draft [supporting]), and Diana Harcourt (Conceptualization [supporting], Data curation [supporting], Formal analysis [supporting], Funding acquisition [lead], Methodology [supporting], Resources [supporting], Supervision [supporting], Writing—original draft [supporting], Writing—review & editing [supporting])

Funding

This research was completed as part of a PhD funded by University of the West of England and supported by the Vocational Training and Charitable Trust Foundation.

Conflicts of interest: None declared.

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Data Availability Statement

The data underlying this article cannot be shared publicly due to the need to protect the confidentiality of the participants.

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