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.     

Generalization of a tactile stimulus in horses.

Using horses, we investigated the control of operant behavior by a tactile stimulus (the training stimulus) and the generalization of behavior to six other similar test stimuli. In a stall, the experimenters mounted a response panel in the doorway. Located on this panel were a response lever and a grain dispenser. The experimenters secured a tactile-stimulus belt to the horse's back. The stimulus belt was constructed by mounting seven solenoids along a piece of burlap in a manner that allowed each to provide the delivery of a tactile stimulus, a repetitive light tapping, at different locations (spaced 10.0 cm apart) along the horse's back. Two preliminary steps were necessary before generalization testing: training a measurable response (lip pressing) and training on several reinforcement schedules in the presence of a training stimulus (tapping by one of the solenoids). We then gave each horse two generalization test sessions. Results indicated that the horses' behavior was effectively controlled by the training stimulus. Horses made the greatest number of responses to the training stimulus, and the tendency to respond to the other test stimuli diminished as the stimuli became farther away from the training stimulus. These findings are discussed in the context of behavioral principles and their relevance to the training of horses.     

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.     

Further evaluation of modified‐bolus‐placement methods during initial treatment of pediatric feeding disorders

Children with feeding disorders might pack or expel food when they lack the oral‐motor skills, the motivation, or both, to swallow. Bolus placement directly on the tongue with a Nuk (e.g., Milnes et al., 2019) or flipped spoon (e.g., Sharp et al., 2010) is a treatment that researchers generally implement after such behavior emerges (e.g., Girolami et al., 2007). However, Wilkins et al. (2014) tested the relative efficacy of Nuk presentation and upright‐spoon presentation during initial treatment of pediatric feeding disorders. In the current study, we compared the effects of (a) upright‐spoon presentation; (b) Nuk presentation; and (c) flipped‐spoon presentation on two product measures of swallowing: 15‐ and 30‐s mouth clean, and expulsion during the initial treatment of feeding disorders with 5 children. We also monitored lip closure during bite presentation and following bolus placement. Nuk presentation produced the highest levels of mouth clean and the lowest rates of expels relative to upright‐spoon presentation and flipped‐spoon presentation. We discuss potential reasons why modified‐bolus‐placement methods improved feeding behavior and how measures of oral‐motor skills might predict its necessity during initial treatment.     

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.     

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.