Psychological adjustment to cleft lip and/or palate: A narrative review of the literature

Objective: Adjustment to cleft lip and/or palate (CL/P) is multifaceted, involving several domains of psychological and social functioning. A substantial increase in research in this area has been evident in recent years, along with a preliminary shift in how adjustment to CL/P is conceptualised and measured. An updated and comprehensive review of the literature is needed in light of the rapidly expanding and changing field.

Design: A narrative review of 148 quantitative and qualitative studies published between January 2004 and July 2015.

Main outcome measures: Findings are presented according to five key domains of adjustment: Developmental Trajectory, Behaviour, Emotional Well-being, Social Experiences and Satisfaction with Appearance and Treatment. Data pertaining to General Psychological Well-being were also examined.

Results: The overall impact of CL/P on psychological adjustment appears to be low. Nonetheless, the review demonstrates the complexity of findings both within and across domains, and highlights recurring methodological challenges.

Conclusions: Research findings from the last decade are considered to be largely inconclusive, although some areas of emerging consensus and improvements in the approaches used were identified. Efforts to collect data from large, representative and longitudinal samples, which are comparable across studies and encompassing of the patient perspective, should be doubled.     

Rathke囊肿的诊断和治疗

为了分析和讨论Rathke囊肿的诊断和治疗,我们回顾性分析45例经病理证实的Rathke囊肿病例,其中38例采用经鼻蝶窦入路显微外科手术,7例采用开颅手术。结果显示,术前明确诊断5例,术后患者症状均有不同程度的缓解或改善。因此,经鼻蝶窦入路显微外科手术是治疗Rathke囊肿的有效方法。     

Maternal interactive behaviour towards children with and children without cleft lip and palate

The present study examined qualitative and quantitative differences in maternal interactive behaviour towards infants with and without cleft lip and palate (CLP). Thirty-three mother-child pairs with CLP and 34 pairs without CLP were videotaped at 3, 6, 9, and 12 months of age in two sorts of play situations at home. In addition, the mothers were questioned by letter about their ability to recognize and interpret the child's signals; their willingness to respond to such signals; and the duration of shared daily activities in the context of feeding and play. The results showed that mothers of CLP children are somewhat less sensitive than other mothers. In addition, it appeared that CLP children play less with other people. Longer feeding times for CLP children appeared to be restricted to the age of 3 months. It is suggested that mothers of CLP children may be comparatively directive and stimulating because of uncertainty about additional deficiencies. Furthermore, they may be inclined to keep their children away from the outside world.     

The effects of early relational antecedents and other factors on the parental sensitivity of mothers and fathers

This study examines the effect of early relational antecedents (ERA, i.e. the quality of parenting parents recalled receiving as children), parenting stress, marital stress, socio‐economic factors and children's characteristics (gender and disability condition) on the parental sensitivity of mothers and fathers. The sample consisted of 116 mothers and 84 fathers of 117 eighteen month old children drawn from a larger longitudinal study on the adaptation of parents to a child with a disability. Thirty‐four children were diagnosed with Down syndrome (DS), 51 with a cleft lip and/or palate (CLP), and 32 were non‐disabled children. Multiple regression analyses reveal that mothers' sensitivity is best predicted by her level of education and family income, whereas fathers' sensitivity is best predicted by their ERA, marital stress, family income and the child's disability condition. Mothers with more education and a greater family income displayed a greater sensitivity to their children, as did fathers who perceive less marital stress, those with a greater family income and those who perceived their parents as less controlling. Also, fathers of children with DS displayed less sensitivity for their children than fathers of children with CLP or fathers of non‐disabled children. These results concord with many studies about the importance of socio‐economic factors, ERA, marital stress, parent's gender and children's factors in the understanding of parental sensitivity. Copyright © 2003 John Wiley & Sons, Ltd.     

The person in narrative therapy: a post-structural,Foucauldian account

Having a facial anomaly is more than likely to cause some degree of psychological discomfort. Prior to establishing the most appropriate psychological intervention, there is a need to determine how having an atypical appearance manifests in day-to-day life. Counselling/psychotherapy provides people with the opportunity to talk about their experience - to tell their story. the aim of this heuristic investigation is to determine the lived experience of having a cleft lip and the potential need for counselling/psychotherapy. A heuristic approach was selected as the most appropriate method and one which would enable participants to talk about their experience. It also requires the researcher to have personal experience of the phenomenon. This study highlights the lack of opportunity to talk about how the presence of a facial disfigurement impacts upon life. Even within the family, it seems, the norm was that ‘it' was there, yet not spoken about. Counselling/psychotherapy could therefore provide a form of education. Provision of such a service would give people a choice. A discussion on the limitations of heuristics indicates the importance of the researchers' awareness, of their own experience, in relation to the phenomena being investigated. In conclusion, a counsellor/ therapist is considered to be an essential member of the multi-disciplinary cleft team, caring for persons with clefts from birth to maturity.     

应用自然辩证法原理指导唇腭裂畸形的序列治疗

唇腭裂畸形是人类最常见的先天发育性缺陷之一.序列治疗的方法是治疗唇腭裂畸形的有效方法.但是由于其中存在着许多矛盾,使得序列治疗变得很复杂.使用自然辩证法的基本原理来为患者设计治疗计划,有助于简化治疗方案,选择最优方案,从而实现无论在形态与功能,还是心理上,均能使患者达到与正常人一样或接近一致的治疗目的.     

Feeding and attachment in infants with and without orofacial clefts

Do the many feeding problems associated with isolated cleft palate (CP) and cleft lip and palate (CLP) adversely affect the emotional bond between mother and infant? This question was addressed by observing the feeding interactions of 126 mother-infant pairs (57 infants with CLP or CP) at 3 and 12 months of age. Infants with CLP were found to be less communicative during feeding at 3 month than comparison group infants. However, by 12 months, the CLP group had improved to a level indistinguishable from the CP and comparison groups. This change was unrelated to the timing of cleft palate surgery. Although maternal sensitivity during feeding at 3 months did not predict the attachment quality of infants with clefts, maternal sensitivity at 12 months was concurrently related to attachment. Change in maternal sensitivity between 3 and 12 months was also predictive of attachment in the cleft groups, with mothers of avoidant infants showing greater attenuation in maternal sensitivity than the mothers of secure infants.     

ATTACHMENT IN INFANTS WITH CLEFT LIP AND/OR PALATE: MARGINAL SECURITY AND ITS CHANGES OVER TIME

This study examines the attachment quality and how this changed over time among infants who had cleft lip and palate (CLP), by conducting a prospective longitudinal study addressing the effects of this type of perinatal event on the parent–infant relationship and the emotional development of the infants. At 12 months of age, the Strange Situation Paradigm (SSP; M. Ainsworth, M.C. Blehar, E. Waters, & T. Wall, 1978) was administered to a sample of 38 CLP infants (born between 2003 and 2010) and 17 healthy controls. At 4 years of age, the Attachment Story Completion Task (ASCT; I. Bretherton, D. Ridgeway, & J. Cassidy, 1990) was administered to 32 individuals from the CLP sample and 14 from the control group. As reported in the literature, CLP infants display secure attachment behaviors as frequently as do control infants (55%). However, a more detailed analysis of the attachment scales revealed that CLP infants show more avoidance and less proximity seeking. In addition, a closer examination of the subcategories of attachment styles revealed that most CLP infants (71%) displayed distal attachment strategies such as the B1/B2 or A1/A2 subcategories. At 4 years old, CLP infants clearly displayed more deactivation and less security than did the control sample. Moreover, when detailing the evolution of attachment individually, almost 60% of the CLP children showing distal strategies at 12 months became deactivated or disorganized when they reached 4 years. Indeed, subtle differences in attachment behaviors at 12 months old—which can be considered marginally secure at that age—may reveal attachment vulnerabilities, which seem to be more apparent over the course of development.     

Psychological growth and well-being in individuals born with cleft: An application of self-determination theory

Objective: Many studies of individuals born with cleft lip and/or palate (CLP) address the psychological impact of CLP in terms of stigma and/or ‘resilience’. The present study challenges the usefulness of resilience in CLP research with the application of self-determination theory (SDT). It is proposed that SDT can serve to better understand how individuals born with CLP can achieve psychological growth and well-being.

Design: Interviews were conducted with 15 individuals born with CLP in the UK.

Results: A thematic analysis was conducted and four main themes emerged: (1) personal challenges, (2) support and strategies for social interaction, (3) experience of treatment and outcomes, and (4) personal development. The thematic analysis and the interpretation in the context of SDT leads to a greater understanding of the development of psychological growth and well-being in individuals born with CLP.

Conclusion: Interpreting the life experiences of individuals with CLP through the theoretical lens of SDT allows the conceptualisation of individuals with CLP as a positive psychological resource when faced with the exclusionary practice of stigma. This resourcefulness is primarily nurtured by a supportive family and social environment that leads to the development of positive psychological growth and well-being. A new direction in CLP research is proposed that seeks to inform and implement change in professional practice to support individuals with CLP and their families.