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Early parental adjustment to visible congenital disfigurement
Abstract
When a baby is born with a visible disfigurement, then parents need to adjust to the loss of the anticipated 'perfect' child and thus accept their baby. The impact of the birth on the parents is described in the context of a measure which identifies areas of potential difficulty. The two groups studied were parents of children with cleft palates and parents of children with congenital hand deficit. A wide range of adjustment was found. There was no significant difference between the two groups in terms of their overall adjustment, but there were individual differences in adjustment which did not relate to the severity or type of anomaly. The only significant variable found to relate to parental adjustment was perceived family support.
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Adjusting to disfigurement: processes involved in dealing with being visibly different
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“Social support is also positively predictive of parental adjustment to having a child with physical impairment (Bradbury and Hewison, 1994).”
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Nasoalveolar Molding: Prevalence of Cleft Centers Offering NAM and Who Seeks It
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“The NAM opponents assert that it places an extra emotional burden on the family system because caregivers are already experiencing a critical period of adaptation to the arrival of a newborn with a birth defect (Bradbury and Hewison, 1994; Pope et al., 2005).”
BackgroundImpact of a Cleft Lip and/or Palate on Maternal Stress and Attachment Representations
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“…to adjust to the loss of the anticipated perfect child; they are likely to experience emotional reactions such as confusion, denial, distress, and guilt (Bradbury and Hewison, 1994), as well as feelings of loss of control, helplessness, and even depression (Seligman, 1975; Wong and Weiner, 1981).”
BackgroundParents’ Emotional and Social Experiences of Caring for a Child Through Cleft Treatment
Nelson, P., Kirk, S., Caress, A., & Glenny, A. (2012) · Qualitative Health Research · doi:10.1177/1049732311421178 · Cited by 102
“…child, and have also highlighted the potential rewards of caring, such as recognizing their family’s personal strengths and developing a sense of community (Bradbury & Hewison, 1994; Eiserman, 2001; Farrimond & Morris, 2004; Johansson & Ringsberg, 2004; Klein, Pope, Getahun, & Thompson, 2006).”
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Early predictors of attachment in infants with cleft lip and/or palate.
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Meeting the psychological needs of patients with facial disfigurement
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Self-citationThe Mental Health Needs of Children and Adolescents with Cleft Lip and/or Palate
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“Although many parents seek the help they need some families isolate themselves because of embarrassment or fear of public reaction (Benson et al., 1991, Bradbury & Hewison, 1984).”
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“Previous studies have reported that mothers of a child with a cleft experience a multitude of emotions including shock, guilt and grief after the birth of their child (Bradbury & Hewison, 1994).”
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“As previous studies report early repair promote a better parent-infant interaction [8, 18], late repair could also be advantageous by giving the time the parents need to accept the malformation and plan the surgery with the medical team [18, 19].”
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“In this group, timely palate repair may aid the new parent–child interactions, as parents are better able to use face-to-face play and respond to social cues from their child [26–28].”
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“With respect to the location of the disfigurement, Bradbury and Hewison (1994) showed that older children with clefts were less socially competent and more shy and familydependent than those with hand problems.”
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Prahl, C., Prahl-Andersen, B., Hof, M. A. V., & Kuijpers-Jagtman, A. (2008) · The Cleft Palate-Craniofacial Journal · doi:10.1597/07-045.1 · Cited by 45
“Not only does the birth of a child with CLP raise controversial emotions in the parents, especially in the mother (Isarin, 2002), but the parents also have to adjust to the loss of the anticipated perfect child (Bradbury and Hewison, 1994).”
BackgroundO'Hanlon, K., Camic, P. M., & Shearer, J. (2011) · The Cleft Palate-Craniofacial Journal · doi:10.1597/10-018 · Cited by 42
“For example, although perceived social support is highlighted as crucial to how children and families adjust to the child’s CL/P (Bradbury and Hewison, 1994; Maddern et al., 2006), findings of both higher and lower levels of perceived support continue to emerge (Benson et al.”
BackgroundAdopted children with cleft lip or palate, or both, require special needs cleft surgery
Hansson, E., Svensson, H., & Becker, M. (2012) · Journal of Plastic Surgery and Hand Surgery · doi:10.3109/2000656x.2012.668774 · Cited by 42
“However, an early repair might aid the parent-infant interaction during the first months, as the interaction involves face-to-face play and response to social cues from the child [12,13].”
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BackgroundInfluentialThe Dental Health and Caries-Related Microflora in Children With Craniosynostosis
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“Also, the baby’s family has to accept not having a perfect baby, and the risk exists of developing a complex relationship with a lot of emotional and psychological aspects between parents and child (Bradbury and Hewison, 1994).”
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“This ultimately leads to a sense of shame, anxiety, depression, and more importantly a lack of ego development in the affected children (Bradbury & Hewison, 1994).”
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Peanchitlertkajorn, S., Cooper, M. E., Liu, Y.-E., Field, L. L., & Marazita, M. L. (2003) · The Cleft Palate-Craniofacial Journal · doi:10.1597/1545-1569(2003)040 · Cited by 24
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Parental experience caring for cleft lip and palate infants with nasoalveolar moulding.
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ResultClubfoot treatment with Ponseti method—parental distress during plaster casting
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“23 However, as NAM therapy techniques have evolved, treatment has become more ef fi cient, and a simple comparison of NAM therapy for patients with BCLP at the same center between 2003 and 2013 shows that treatment duration is now shorter by an average of 1 month.”
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“Parents and especially mothers of children with congenital malformations often describe feelings like fear, guilt, self-blame and associated anxiety (8,11).”
BackgroundReconstruction of the hypoplastic thumb
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“Perceived family support has also been found to be associated with parental adjustment to having a child with a physical impairment (Bradbury and Hewison, 1994).”
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“Therefore, having a baby with CLP may introduce compounding issues associated with having a baby with unexpected developmental concerns (Bradbury and Hewison, 1994; Despars et al., 2011).”
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“In contrast, even though the treatment is offered to the patients, full compliance may not be achieved by the caregivers/families (Bradbury and Hewison, 1994; LevyBercowski et al., 2009).”
BackgroundPrenatal consultation with the pediatric otolaryngologist.
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Educational paper: Parenting a child with a disfiguring condition—how (well) do parents adapt?
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Abadie, I., Sudres, J., & Rajon, A.-M. (2004) · doi:10.1016/j.neurenf.2004.06.004 · Cited by 7
Naissance d'un enfant avec une malformation faciale : analyse clinique du discours parental
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Prospective evaluation of parental anxiety related to newborn foot disorder
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“Adjustment is required from the anticipated ‘perfect’ baby and their baby with a visible difference [16].”
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“Parents of a child with an orofacial cleft must quickly learn to handle the new situation after the shock and disappointment of hearing of their child’s birth defect [4-7].”
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“Generally, parents of children with CLP experience feelings of confusion, distress, guilt, 20 loss of control, helplessness, and depression 21 since the diagnosis of deformity at birth or earlier.”
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“5,11,28 Weekly hospital visits for plate molding disrupted parents ’ routines, requiring them to take leave from work.”
Роль информации и библиотек в развитии педагогической науки и образования
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Oliver, J. (2017) · doi:10.17635/lancaster/thesis/55 · Cited by 2
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The influence of lip reconstruction on mother-infant bonding during the perioperative phase.
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“Consistent with prior studies, 59,60 when initially presented with a diagnosis of CLP, most parents expressed a range of negative emotional reactions.”
Media Depiction of Birth Differences of the Upper Extremity: Accuracy of Shared Diagnoses
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“Also, those parents complain of negative psychological impacts, such as confusion, stress, guilt, loss of control, and sometimes complain of depression (Bradbury and Hewison, 1994; Rey-Bellet and Hohlfeld, 2004).”
BackgroundA GT study of parent adjustment after the birth of a child with a facial birthmark
Gait, L. (2017) · doi:10.18745/th.17465
“Authors Methodology Participants Key Points Critique Bradbury & Hewison (1994) UK Attributional analysis is used to cluster semi- structured interviews into 6 themes and then the interviews were scored on a 3-point scale against the identified themes in order to generate a measure of parental adjustment which was then…”
BackgroundMethodInfluentialExploring the Experiences of Fathers ofChildren with a Visible Facial Difference
Perella, F. (2013) · UEL Research Repository (University of East London) · doi:10.15123/pub.3455
“…emotional reactions of parents, with affirmative feelings being experienced alongside anxiety and sadness, and they acknowledge potential for positive outcomes, such as recognition of personal strengths (Bradbury & Hewison, 1994; Eiserman, 2001; Johansson & Ringsberg, 2004; Klein et al., 2006).”
BackgroundResult
Metadata
- Authors
- BRADBURY, E. T., & HEWISON, J.
- Affiliations
- Withington Community Hospital (GB)
- University of Leeds (GB)
- Corresponding author
- BRADBURY, E. T.
- ORCID
- HEWISON, J.
- Venue
- Child: Care, Health and Development
- Publisher
- Wiley
- Published
- 1994-07
- Volume
- 20
- Issue
- 4
- Pages
- 251-266
- ISSN
- 0305-1862 (ISSN-L)
- 1365-2214
- OpenAlex
- W2003335859
- Cited by
- 92
- References
- 19
- Citations by year
- 2026: 2 · 2025: 3 · 2024: 3 · 2023: 2 · 2022: 5 · 2021: 2 · 2020: 9 · 2019: 3 · 2018: 2 · 2017: 3 · 2016: 2 · 2015: 1 · 2014: 3 · 2013: 2 · 2012: 5
- FWCI
- 2.03
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Child Care Health and Development (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Dentistry › Oral Surgery › Cleft Lip and Palate Research
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Developmental Biology › Congenital limb and hand anomalies
- Keywords
- parental adjustment, cleft palate, perceived family support, parent stress, acceptance of children
- MeSH terms
- Congenital Abnormalities, Adaptation, Psychological, Adolescent, Child, Child, Preschool, Cleft Lip, Cleft Palate, Female, Follow-Up Studies, Hand Deformities, Congenital, Humans, Infant, Infant, Newborn, Male, Object Attachment, Parent-Child Relations, Parents, Rejection, Psychology
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