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Risk and Protective Factors for Psychological Distress in Families Following a Diagnosis of Cleft Lip and/or Palate
Open accessAbstract
Objectives Despite the potential psychological impact of a diagnosis of cleft lip and/or palate (CL/P) on parents, few large-scale studies currently exist. Utilizing data extracted from The Cleft Collective Birth Cohort Study, the current study aimed to examine the psychological impact of the diagnosis on parent and family functioning and to identify risk and/or protective factors contributing to parental adjustment in order to inform future psychological intervention. Methods Parent-reported questionnaire data were extracted for 1163 parents (644 mothers and 519 fathers). Outcome measures included the PedsQL-Family Impact Module, the Perceived Stress Scale, the Hospital Anxiety and Depression Scale, and a condition-specific tool designed by the Psychology Clinical Excellence Network. Results Overall, findings suggest that parents adjust well to the diagnosis. Factors found to be protective against psychological distress for both mothers and fathers included a positive life orientation, satisfaction with health care, and relationship satisfaction. Close friendships were also protective against depression in mothers. Risk factors for mothers included the presence of a prior mental health condition, and stressful life events during pregnancy. Risk factors for fathers included being older at the time of conception, and recently being absent from work. Conclusions Findings suggest a need for appropriate psychological screening of both parents following a diagnosis of CL/P and emp…
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Cited by
Sorted by citations
Stock, N., Zucchelli, F., Hudson, N., Kiff, J., & Hammond, V. (2019) · The Cleft Palate-Craniofacial Journal · doi:10.1177/1055665619868331 · Cited by 30
Self-citationCrerand, C., Conrad, A., Bellucci, C. C., Albert, M., Heppner, C. E., Sheikh, F., Woodard, S., Udaipuria, S., & Kapp-Simon, K. (2023) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656231181581 · Cited by 27
Feeding and Growth in Infants With Cleft Lip and/or Palate: Relationships With Maternal Distress
Madhoun, L. L., Crerand, C., O’Brien, M., & Baylis, A. L. (2020) · The Cleft Palate-Craniofacial Journal · doi:10.1177/1055665620956873 · Cited by 26
“This diagnosis may be particularly distressing for mothers who have a prior mental health condition or who have experienced stressful life events during the pregnancy (Stock et al., 2020).”
BackgroundCosta, B., Mcwilliams, D., Blighe, S., Hudson, N., Hotton, M., Swan, M., & Stock, N. (2021) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656211055006 · Cited by 24
“…their experiences, connect with others, give and receive emotional support and information, and obtain quick responses to queries in a semi-anonymous environment (Stock et al., 2019), studies have also shown that online information can be of variable quality [Antonarakis and Kiliaridis, 2009].”
BackgroundSelf-citationRaising a Child with Craniosynostosis: Psychosocial Adjustment in Caregivers
Costa, B., Edwards, W., Culshaw, L., Wilkinson-Bell, K., & Stock, N. (2022) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656221102043 · Cited by 21
“As noted in previous literature, satisfaction with relationships (including romantic relationships and friendships) could be an important protective factor against poor psychological outcomes in parents of children with craniofacial conditions (Stock et al., 2020).”
BackgroundSelf-citationThornton, M., Harcourt, D. M., Deave, T., Kiff, J. D., & Williamson, H. (2021) · Developmental Neurorehabilitation · doi:10.1080/17518423.2021.1901150 · Cited by 33
“Siblings of burn-injured children have also reported less involvement in school activities and lower social competence when compared to a normative sample.(53) Therefore, it is important to consider the potential impact of a parent’s increased desire to protect their children, in terms of their child’s social and emot…”
BackgroundCaring for a Child with a Cleft Lip and/or Palate: A Narrative Review
Stock, N. M., Blaso, D., & Hotton, M. (2024) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656241280071 · Cited by 22
Self-citationCosta, B., Ardouin, K., & Stock, N. (2021) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656211028494 · Cited by 20
“Although a handful of quantitative studies have explored possible factors associated with psychological adjustment in parents of children born with CL/P (Stock et al., 2020), and in children and adolescents with CL/P (Berger & Dalton, 2011; Feragen et al.”
BackgroundSelf-citationNamdar, P., Pourasghar, M., Alizadeh, F. L., & Shiva, A. (2022) · Iranian Journal of Psychiatry and Behavioral Sciences · doi:10.5812/ijpbs-113591 · Cited by 17
“Moreover, fathers with CL/P children achieved better scores than normal individuals on all the scales of the Pediatric Quality of Life Family Impact Module (PedsQL-FIM) (41).”
BackgroundInfluentialStock, N., Hammond, V., Hearst, D., Owen, T., Edwards, Z., Ridley, M., & Rumsey, N. (2020) · The Cleft Palate-Craniofacial Journal · doi:10.1177/1055665619898596 · Cited by 17
“Specifically, the measures set has been used to assess parental well-being and child development compared to the general population, to evaluate parents’ satisfaction with health care, and to identify the risk and protective factors that contribute to psychological distress in parents (Stock et al., 2020; Costa et al.…”
BackgroundSelf-citationBerman, S., Sharp, G. C., Lewis, S. J., Blakey, R., Davies, A., Humphries, K., Wren, Y. E., Sandy, J. R., & Stergiakouli, E. (2022) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656221119684 · Cited by 14
“52 In one recent study using the PedsQL FIM, total scores and family functioning summary scores were reported to be higher following a diagnosis of CL/P compared to normative data.”
BackgroundMethodResultParents' Emotional and Social Experiences of Caring a Child with Cleft Lip and/or Palate
Carvalho, N. O., Matos, M., Belchior, I., Araújo, M. B., Rocha, C. T., & Neves, B. (2021) · doi:10.1590/pboci.2021.058 · Cited by 16
“psychological impact on parents [12], the present study aimed to evaluate the emotional and social experiences”
BackgroundParents’ views and experiences of raising babies born with cleft lip and palate: a qualitative study
Alinezhad, D., Mohammadi, F., Kharazifared, M. J., Gholami, M., Sarmadi, S., & Razeghi, S. (2025) · BMC Pediatrics · doi:10.1186/s12887-024-05379-6 · Cited by 15
“Par-ents must handle potentially awkward responses from friends, family, and the public, and insufficient knowledge on managing these situations can lead to increasing isolation of parents [7, 10].”
van Dalen, M., Leemreis, W., Kraaij, V., de Laat, P. D., Pasmans, S., Versnel, S., Koudstaal, M., Hillegers, M., Utens, E., & Okkerse, J. (2021) · The Cleft Palate-Craniofacial Journal · doi:10.1177/1055665621993298 · Cited by 14
“A recent study by Stock et al. (2020) among 1163 parents of children with cleft lip and/or palate (CL/P) showed that mothers of newborn children with CL/P score higher on anxiety and depression when compared to normative data.”
BackgroundInfluentialAminwala, M. S., Zaidi, S. J. A., Ganatra, M. A., Taqi, M., Hamid, D., & Aminwala, Z. (2024) · BMC Oral Health · doi:10.1186/s12903-024-05293-4 · Cited by 13
Lindberg, N., Kynø, N., Feragen, K. B., Pripp, A., & Tønseth, K. (2024) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656241231524 · Cited by 11
“1 In contrast, other studies have revealed less distress and parenting stress than norms 15 and lower psychosocial distress and a high degree of positive adjustment.”
Costa, B., White, P., Kiff, J., Davies, A., & Stock, N. (2020) · Child: Care, Health and Development · doi:10.1111/cch.12813 · Cited by 11
Self-citationSato, Y., Yoshioka, E., Saijo, Y., Miyamoto, T., Sengoku, K., Azuma, H., Tanahashi, Y., Ito, Y., Kobayashi, S., Minatoya, M., et al. (2020) · The Cleft Palate-Craniofacial Journal · doi:10.1177/1055665620951399 · Cited by 11
“Since a prenatal diagnosis could place a psychological burden on mothers, mothers of infants with CLP or CP might be at risk of psychological distress (Johns et al., 2018; Mauriën et al., 2019; Stock et al., 2020).”
BackgroundResultCosta, B., White, P., & Stock, N. (2019) · The Cleft Palate-Craniofacial Journal · doi:10.1177/1055665619888318 · Cited by 11
“In a recent UK-wide quantitative study exploring parents’ psychosocial adjustment following the birth of a child with CL/P (Stock et al., 2019a), satisfaction with health-care was consistently associated with higher levels of parental psychological well-being.”
BackgroundInfluentialSelf-citationFladeboe, K. M., Stock, N., Heike, C., Evans, K., Junkins, C. C., Stueckle, L., O'Daffer, A., Rosenberg, A., & Yi-Frazier, J. P. (2023) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656231157449 · Cited by 10
“6,20,21 Finally, PRISM can be successfully delivered by bachelor ’ s-or master ’ s-level staff 9 and thus has potential to be disseminated in a cost effective manner.”
BackgroundSelf-citationMcwilliams, D., Costa, B., Blighe, S., Swan, M., Hotton, M., Hudson, N., & Stock, N. (2022) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656221074870 · Cited by 10
Self-citationPaganini, A., Persson, M., & Mark, H. (2021) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656211025196 · Cited by 10
“…the coping strategies utilized, previous studies have focused on coping 716 The Cleft Palate-Craniofacial Journal 59(6) strategies among parents of children with CLP (Stock et al., 2020a) and coping among children and adolescents living with cleft (Berger and Dalton, 2009; Berger and Dalton, 2011).”
MethodResultStock, N. M., Costa, B., Parnell, J., Johns, A. L., Crerand, C. E., Feragen, K. B., Stueckle, L. P., Mills, A., Magee, L., Hotton, M., et al. (2024) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656241245284 · Cited by 10
“Previous research in craniofacial 10,15,34 and other chronic health conditions 4,33 has consistently emphasized the importance of healthcare satisfaction and appropriate educational provisions for caregiver well-being and family functioning, and has called for improvements in healthcare provider…”
Self-citationThe emotional and social concerns of mothers of children with cleft palate: A cross-sectional study.
El-Hneiti, M., Shehadeh, J. H., Qatamin, B., & Shaheen, A. (2024) · Journal of pediatric nursing · doi:10.1016/j.pedn.2024.02.024 · Cited by 9
Zhang, C., Wu, L.-H., Zhao, S., Wang, Q.-W., Li, T., & Wang, J.-Q. (2021) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0000000000008151 · Cited by 9
“in 2012, The Cleft Collective, a national birth cohort study established in the United Kingdom, used longitudinalquestionnaires toassess thepsychological impactofcleft lipand/ or palate on children and families.(22,23) Furthermore, psychological support groups have been introduced for the treatment of craniofacial def…”
MethodMa, S.-W., Lai, S., Yang, Y., Zhou, Z., Yang, B.-T., Zheng, G.-Z.-Y., Gao, J., & Lu, L. (2021) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2021.648885 · Cited by 8
“For example, the study in the USA used the Hospital Anxiety and Depression Scale (53), while we employed CES-D scale and GAD-7 to assess depressive and anxiety symptoms.”
MethodResultCronin, A., Verdon, S., & Mcleod, S. (2021) · Journal of Communication Disorders · doi:10.1016/j.jcomdis.2021.106102 · Cited by 9
Lindberg, N., Kynø, N. M., Feragen, K. J. B., Pripp, A., & Tønseth, K. (2023) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656231171750 · Cited by 7
“13,15 Both parents, particularly mothers, report more stress than those of children without CL/P and compared to normative data for the measure used, 7,16 but they also report stress-related growth and positive adjustment.”
BackgroundGavelle, P., Dissaux, C., Dupont, M., Khonsari, R., & Picard, A. (2022) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656221126268 · Cited by 7
Thornton, M., Harcourt, D. M., Deave, T., Kiff, J. D., White, P., & Williamson, H. (2024) · Body Image · doi:10.1016/j.bodyim.2024.101768 · Cited by 6
Self-citationPediatric Medical Traumatic Stress in Individuals With Craniofacial Conditions
Crerand, C., Feragen, K. J. B., Johns, A. L., Umbaugh, H., McClinchie, M. G., Drake, A. F., Heike, C., Yi-Frazier, J. P., & Stock, N. (2024) · Perspectives of the ASHA Special Interest Groups · doi:10.1044/2024_persp-23-00236 · Cited by 6
Self-citationStress and Coping Strategies in Malay Parents of Children with Cleft Lip and/or Palate
Norsa'adah, B., Nurhazalini-Zayani, C. G. C., Aniza, A., Normastura, A. R., & Ahmad-Burhanudddin, A. (2024) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656241236011 · Cited by 6
“11 A cross-sectional study in Nigeria reported that only 34.5% of 90 caregivers of children with orofacial cleft deformities expressed little or no burden.”
InfluentialStock, N., & Costa, B. (2020) · The Cleft Palate-Craniofacial Journal · doi:10.1177/1055665619883151 · Cited by 6
“Parents have reported complex emotional responses to the diagnosis, including grief, shock, anger, guilt, and worry (Nelson et al., 2012a), in addition to raised levels of stress, anxiety, and depression (Stock et al., 2019a).”
BackgroundInfluentialSelf-citationRammos, A., Blakey, R., Dennison, C. A., Lewis, S. J., Ali, N. M. H., Davies, A., Wren, Y. E., Humphries, K., Sandy, J. R., Rees, E., et al. (2025) · Human Molecular Genetics · doi:10.1093/hmg/ddaf115 · Cited by 5
“…appearance differences and bullying might be contributing to the increased prevalence of some behavioural problems among children born with CL/P [14],it is possible that the higher prevalence of neurodevelopmental and behavioural problems among children born with CL/P is partially explained b y…”
Oladayo, A. M., Sule, V. C., Oshodi, Y., Adekunle, A., Adeyemo, W., Ogunlewe, O., Ayelomi, O., Babatunde, A., Aikomo, B., Ajadi, A., et al. (2025) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656251332351 · Cited by 3
“77,78 More so, societal expectations placed on mothers can further amplify feelings of guilt and inadequacy, making it dif fi cult for them to seek help and increasing their anxiety about their caregiving abilities.”
Hotton, M., Shepherd, L., & Stock, N. (2025) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656251315659 · Cited by 3
Self-citationTano, E., Tano, P. F., Hoyte-Williams, P., Acheampong, A., Donkor, P., & Yeboah, S. O. (2022) · Surgical Science · doi:10.4236/ss.2022.131054 · Cited by 3
Shepherd, L., Zucchelli, F., Aspland, R., White, P., Hotton, M., & Stock, N. M. (2026) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656251392271 · Cited by 1
“15 Therefore, developing helpful ways of coping with or responding to potential stressors and challenges associated with having a child with a craniofacial condition 16 is likely to be important.”
Self-citationTrezena, S., de Oliveira, F. E. S., Marques, C. E., Marques, N. C. T., Dias, V. O., Martelli, D. R. B., & Júnior, H. M. (2025) · Brazilian journal of oral sciences/Brazilian Journal of Oral Sciences · doi:10.20396/bjos.v24i00.8675018 · Cited by 1
Riklin, E., Choi, D. G., Trotter, C., Lasky, S., Kato, R. M., Ward, S. D. D., Magee, W., Hammoudeh, J., Urata, M., & Johns, A. L. (2024) · The Journal of craniofacial surgery (Print) · doi:10.1097/scs.0000000000010504 · Cited by 1
Evaluation of Anxiety in Turkish Parents of Newborns with Cleft Palate with or Without Cleft Lip
Akturk, E. S., Şeker, E., Çapkın, D., & Kutuk, M. S. (2023) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656221148903 · Cited by 1
“19 Although this study evaluated the effect of having a child with a cleft or the type of cleft on the anxiety level of parents in the study, it should not be forgotten that many factors may in fl uence individuals ’ anxiety levels.”
BackgroundKaye, A., Shah, K., Lybrand, S., Baysinger, S., & Tracy, M. (2021) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656211013259 · Cited by 1
“The birth of a child with a cleft may also stimulate feelings of anxiety, inadequacy, and guilt based on the arrival of the “imperfect” infant, which may lead to poorer attachments, greater insecurities, and less attentiveness by the parents (Dölger-Hafner et al., 1997; Endriga & KappSimon, 1999; Despars et al., 2011;…”
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Cronin, A., Verdon, S., & Mcleod, S. (2020) · Journal of Clinical Practice in Speech-Language Pathology · doi:10.1080/22087168.2020.12370295 · Cited by 1
Prenatal Diagnosis of Orofacial Clefts: Impact on Care Timelines and Patient-Reported Outcomes
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Self-citationGenç, Y. S., Moroğlu, N., Moroğlu, B., Yıldırım, A., & Erdem, R. (2026) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656261468954
Kapp-Simon, K., Albert, M., Crerand, C., Bellucci, C. C., Heppner, C. E., Woodard, S., & Conrad, A. L. (2026) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656261462270
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“36 One possible factor when considering parental outcomes is the age of the child.”
Jensen, E., Soares, G., Cook, S. P., Seifert, M. L., Ju, X., Moore, M., Roberts, R., Anderson, P. J., & Jamieson, L. M. (2025) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656251387961
“23,24 This is particularly relevant in adolescence, when appearance-related concerns and social pressures may in fl uence perceptions of treatment outcomes and satisfaction.”
Yang, S., Hao, J., Liu, X., Lv, Y., Xue, H., Wang, M., & Zhu, M. (2025) · BMC Pregnancy and Childbirth · doi:10.1186/s12884-025-07991-5
“Scholars demonstrated that adherence to the behaviors associated with “doing the month” can provide social support and reduce the risk of postpartum depression [46].”
Young people's experiences of living with endocrine conditions
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Mercho, P. F., Tran, K. D., Muraru, R. I., Cordes, E. J., Tholpady, S. S., & Makar, K. G. (2025) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656251326479
Berman, S., Sharp, G. C., Lewis, S. J., Blakey, R., Davies, A., Humphries, K., Wren, Y., Sandy, J., & Stergiakouli, E. (2021) · medRxiv · doi:10.1101/2021.08.04.21261594
“In one recent study using the PedsQLTM FIM, family functioning was reported to be higher by (n=1,163 parents) following a diagnosis of CL/P, compared to normative data (Stock et al., 2020).”
Background
Metadata
- Authors
- Stock, N. M., Costa, B., White, P., & Rumsey, N.
- Affiliations
- University of the West of England (GB)
- Corresponding author
- Stock, Nicola Marie
- Venue
- The Cleft Palate Craniofacial Journal
- Publisher
- SAGE Publications
- Published
- 2019-08-04
- Volume
- 57
- Issue
- 1
- Pages
- 88-98
- ISSN
- 1055-6656 (ISSN-L)
- 1545-1569
- OpenAlex
- W2955182721
- Cited by
- 61
- References
- 50
- Citations by year
- 2026: 7 · 2025: 12 · 2024: 12 · 2023: 6 · 2022: 6 · 2021: 10 · 2020: 5 · 2019: 3
- FWCI
- 3.60
- Type
- journal article
- Language
- en
- Open access
- green
- eprints.uwe.ac.uk
- Locations
- The Cleft Palate-Craniofacial Journal (publishedVersion)
- PubMed (publishedVersion)
- UWE Research Repository (UWE Bristol) (submittedVersion, cc-by)
- Funders
- Scar Free Foundation (Registered Charity: 1078666)
- Topics
- Health Sciences › Dentistry › Oral Surgery › Cleft Lip and Palate Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Social Sciences › Psychology › Clinical Psychology › Resilience and Mental Health
- Keywords
- cleft lip and palate, parental psychological distress, family functioning, risk and protective factors, parental adjustment, mothers, fathers, perceived stress, anxiety and depression, life orientation, relationship satisfaction, health care satisfaction, psychological screening, multidisciplinary care
- MeSH terms
- Psychological Distress, Cleft Lip, Cleft Palate, Female, Humans, Male, Parents, Pregnancy, Stress, Psychological, Cohort Studies, Protective Factors
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