Thematic Analysis of Coping Strategies Used by Parents of Children with Cleft Lip and Palate in El Salvador

2021 ◽  
pp. 105566562110628
Author(s):  
Ramon Manuel Aleman ◽  
Maria Guadalupe Martinez
Keyword(s):  
Social Interaction ◽  
Coping Strategies ◽  
El Salvador ◽  
Thematic Analysis ◽  
Cleft Lip ◽  
Formal Education ◽  
Cleft Lip And Palate ◽  
Qualitative Interviews ◽  
Sociocultural Factors ◽  
Language Therapy

Objective The aim of this study was to describe coping strategies used by parents of children with cleft palate with or without a cleft (CP ± L) during the early development of their children in El Salvador. Design Qualitative interviews were completed with 16 parents of children born with CP ± L who were 6 months to 6 years old. Parents were questioned about their emotions and coping during eight time periods: prenatal, birth, social interaction before the first surgery, the beginning of surgeries, social interaction after the first surgery, early childhood education (ECE), speech–language therapy, and formal education. Thematic analysis (TA) was used to identify coping strategies as conceptualized by Lazarus and Folkman (1984) . Results Four major themes emerged: (a) experienced emotions related to diagnosis, (b) interpretations related to the birth of a child with a cleft, (c) seeking and experiencing cleft treatment, and (d) social interaction of the children. During prenatal and birth stages, parents used emotion-focused strategies. A few hours to a week after birth, they used problem-focused strategies, which led them in search of treatment. Some parents used avoidance strategies during periods of social interaction before surgery, ECE, and formal education. Socioeconomic challenges impacted access to speech–language therapy. Sociocultural factors, such as discrimination, religion, and folk beliefs, appeared to influence some of the coping strategies used by parents. Conclusions Problem-focused strategies appear to be helpful in seeking surgical treatments. The emotion-focused strategy of avoidance seemed to have adverse effects in minimizing opportunities for social interaction prior to surgery and early education.

Observed Social Interaction Patterns in Adolescents with and without Craniofacial Conditions

1997 ◽  
Vol 34 (5) ◽  
pp. 380-384 ◽  
Author(s):  
Kathleen A. Kapp-Simon ◽  
Dennis E. Mcguire
Keyword(s):  
Social Interaction ◽  
Social Interactions ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Social Contact ◽  
School Lunch ◽  
Interaction Patterns ◽  
Number Of Children ◽  
Type Frequency ◽  
Social Interaction Skills

Objective: This study examined social interactions of adolescents in a natural environment (school lunch room) to determine if there were identifiable differences in social behavior between children with and without craniofacial conditions (CFC). Design: This was an observational study comparing social interaction skills of children with CFC to peers without craniofacial conditions. Setting: The observations were conducted in the respective school lunch rooms of the adolescents with CFC. Participants: Clinical subjects were 13 adolescents (4 male) with various craniofacial conditions (5 cleft lip and palate) and 12 (4 male) peers without CFC present in the same lunch room. Main Outcome Measures: An unknown observer obtained 45 minutes of structured observational data on subject initiations, responses, nondirected comments, and extended conversations over two to three lunch room periods. Data was coded on the Epson HX-20 for type, frequency, and duration of social contact. Specific measures included: subject initiations and responses, peer initiations and responses, conversations events, and nondirected comments. Results: Statistically significant differences were found between CFC and comparison subjects (CS) on each social interaction variable measured. CS initiated more contacts, received positive responses more frequently, and engaged in longer conversations than CFC subjects ([F (1,24) = 14.1, p <.01; F (1,24) = 61.2, p <.001; F (1,24) = 5.50, p <.05]. CS were approached by and responded appropriately to peers more often [F (1,24) = 28.1, p <.001; F (1,24) = 43.2, p <.001]. Subjects with CFC were more likely to produce nondirected comments (N = 7, x = 0, p < .01). Conclusions: A significant number of children with CFC behaved differently than their peers in a natural, daily occurring situation. They were often at the periphery of the group, observers rather than participants in conversation.

Coping Strategies and Social Support in the Family Impact of Cleft Lip and Palate and Parents’ Adjustment and Psychological Distress

2009 ◽  
Vol 46 (3) ◽  
pp. 229-236 ◽  
Author(s):  
Sarah R. Baker ◽  
Jan Owens ◽  
Melanie Stern ◽  
Derrick Willmot
Keyword(s):  
Social Support ◽  
Psychological Distress ◽  
Coping Strategies ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Family Impact ◽  
Medical Problems ◽  
Cross Sectional ◽  
Positive Adjustment ◽  
The Family

Objective: To examine the role of parents’ coping strategies and social support in the family impact of cleft lip and palate (CLP) and levels of adjustment and psychological distress and to investigate whether a child's age, type of cleft, or other reported medical problems influenced such outcomes. Design: A cross-sectional study. Participants: One hundred three parents of children or young adults with CLP recruited from families attending a multidisciplinary cleft lip and palate clinic. Outcome measures: Family impact, psychological distress, and positive adjustment were assessed using validated psychological questionnaires. Results: Findings indicated that while there were many impacts of a child's CLP, negative outcomes (family impact, psychological distress) were not high. In contrast, parents reported high levels of positive adjustment or stress-related growth as a result of their child's condition. Participants also reported high levels of social support and relied more on the use of approach rather than avoidance-oriented coping strategies. Having more support from friends and family was associated with less negative family impact, lower psychological distress, and better adjustment. Greater use of approach coping was associated with more positive adjustment; whereas, avoidant coping was associated with a greater family impact and more psychological distress. Having a younger child and/or a child with medical problems in addition to CLP was associated with a greater impact on the family. Conclusions: How parents cope with their child's condition and the levels of support received may have implications for caregivers, the family unit, and the delivery of more family-oriented CLP services.

Evaluation of interdisciplinary treatment outcomes in patients with cleft lip and palate. Part 1.

2018 ◽  
Vol 14 (4) ◽  
pp. 270-283
Author(s):  
Bogna Racka-Pilszak ◽  
Anna Wojtaszek-Słomińska ◽  
Agata Zdun-Ryżewska ◽  
Mikołaj Majkowicz ◽  
Agnieszka Banaszkiewicz ◽  
...  
Keyword(s):  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Multidisciplinary Treatment ◽  
Congenital Defect ◽  
Interdisciplinary Treatment ◽  
Mental Condition ◽  
Language Therapy ◽  
Facial Skeleton ◽  
Before And After ◽  
The University

Cleft palate is the most common congenital defect within the facial skeleton. Coexisting facial deformations are not only visible, but also audible after surgery – children born with cleft lip and palate belong to the risk group for occurrence of speech-language disorders. Due to this fact, they may face inappropriate responses of people around, which may cause poor mental condition. Majority of subjects (ca. 67 percent) experienced unpleasant feelings caused by people around them and noticed contribution of the cleft to lowered selfconfidence. Almost 56 percent of the studied group notices influence of this congenital defect on ability to establish social relationships, and 33 percent – on results achieved at school. <b>Aim.</b> The main aim of the study was to evaluate efficacy of treatment in patients with cleft lip and palate as well as usefulness of applied research tools (questionnaire, GOSLON score). <b>Material and methods.</b> Study material included a group of 45 subjects with unilateral and bilateral cleft lip and palate, who completed multidisciplinary treatment. Mean age of the subjects was 22 years. The study was conducted at the Outpatient Orthodontic Clinic of the University Dentistry Centre of the Medical University of Gdansk. Research methods included evaluation of the occlusal abnormalities before and after treatment using GOSLON score, questionnaire completed by the patient, and specialist speech-language examination. <b>Results.</b> The highest percentage of satisfied patients was observed among subjects, who underwent orthodontic treatment (ca. 90 percent), which corresponded with established improvement in occlusal conditions after treatment. Appearance of the respective facial areas was mainly defined as good or very good. It was also noticed that the more the patient was satisfied with speech-language therapy, the more he/she was satisfied with speech quality. <b>Conclusions.</b> Evaluation of final outcomes of the multidisciplinary treatment in patients with cleft lip and palate constitutes high clinical significance in order to make further development and to evaluate currently used therapeutic management standards.

scholarly journals DEVELOPING SPEECH LANGUAGE THERAPY FOR CLEFT LIP AND PALATE IN PAKISTAN

2015 ◽  
Vol 4 (2) ◽  
pp. 4-6
Author(s):  
Amina Asif Siddiqui
Keyword(s):  
Health Care Professionals ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Academic Career ◽  
Well Being ◽  
Good Health ◽  
Speech Development ◽  
Feeding Strategies ◽  
Language Therapy ◽  
Cleft Lip Palate

Cleft lip and palate is a congenital craniofacial anomaly of the oral cavity, where in a structural malformation in the upper jaw including the lip, teeth, alveolus, bony hard palate, soft palate and/or uvula, critically interfere with functions of feeding and speech development. The condition is defined according to its presentation, which may be unilateral or bilateral, with a partial or total cleft, having higher incidence in the Indian sub-continent, including Pakistan, as compared to the rest of the developed world. A cleft lip/palate warrants early intervention through a multidisciplinary team of health care professionals, namely: pediatrician, plastic surgeon, otorhinolaryngologist; maxillofacial surgeon, dentist, orthodontist, prosthodontist, nutritionist, speech language therapist, and psychologist. Appropriate feeding strategies along with specialized tools may be employed soon after birth to ensure good health in preparation of surgery as early as possible. Speech-language therapy is an essential aspect of intervention, which helps the child develop effective verbal communication skills which is crucial for social and emotional well being, as well as for a successful academic career.

Evolution of Cleft Lip and Palate Surgical Training in the UK: A Qualitative Study

2021 ◽  
pp. 105566562110584
Author(s):  
Sophie Butterworth ◽  
Emma L. Hodgkinson ◽  
Nicola M. Stock ◽  
David C. G. Sainsbury ◽  
Peter D. Hodgkinson
Keyword(s):  
Thematic Analysis ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Maxillofacial Surgery ◽  
Practical Experience ◽  
Structured Interview ◽  
Training Experience ◽  
Cleft Palate Repair ◽  
Palate Repair ◽  
The Uk

Background Although the United Kingdom (UK) cleft surgeons follow a similar training pathway, and cleft centers adhere to similar protocols regarding the timing of palate surgery and surgical technique, speech outcomes still vary between centers. Objective To explore the training experiences of consultant cleft lip and palate (CL/P) surgeons, performing a Sommerlad radical intravelar veloplasty (IVVP) and their approach to teaching others. Design An exploratory, qualitative approach was adopted to understand the views of UK cleft surgeons performing a Sommerlad radical IVVP and discuss what was important during training and upon qualifying as a consultant. Method A semi-structured interview schedule was designed, interviews were conducted in-person or via videoconferencing, depending on preference and availability, with interested surgeons. The interviews were recorded, transcribed, and checked for accuracy. Analysis involved inductive thematic analysis. Results Fourteen cleft consultants from the UK participated (3F:11M). Seven of the consultants were trained in plastic surgery and four in maxillofacial surgery. Seven themes were identified from the thematic analysis. Three themes, namely Learning to perform palate repair, Teaching others to perform palate repair, and Ongoing learning as a consultant are discussed. Conclusions Cleft palate repair is clearly a technically challenging procedure to learn and teach with the potential to cause harm if performed incorrectly. Positive changes have been made to improve exposure to palate surgery, encourage practice away from the patient, and increase supervised practical experience. The role of colleagues in providing mentorship and support appears invaluable. We provide some simple recommendations that may improve the training experience and ensure parity for all trainees.

Decision-Making in Cleft-Related Surgery: A Qualitative Analysis of Patients and Caregivers

2019 ◽  
Vol 57 (2) ◽  
pp. 161-168
Author(s):  
Katelyn G. Bennett ◽  
Annie K. Patterson ◽  
Kylie Schafer ◽  
Madeleine Haase ◽  
Kavitha Ranganathan ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Thematic Analysis ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Care Center ◽  
Tertiary Care ◽  
Shared Decision ◽  
Surgical Indications ◽  
Facial Difference

Objective: Preference-sensitive surgical decisions merit shared decision-making, as decision engagement can reduce decisional conflict and regret. Elective cleft-related procedures are often preference sensitive, and therefore, we sought to better understand decision-making in this population. Design: Semistructured interviews were conducted to elicit qualitative data. A hierarchical codebook was developed through an iterative process in preparation for thematic analysis. Thematic analysis was performed to examine differences between patients and caregivers. Setting: Multidisciplinary cleft clinic at a tertiary care center. Participants: Patients with cleft lip aged 8 and older (n = 31) and their caregivers (n = 31) were purposively sampled. Inability to converse in English, intellectual disability, or syndromic diagnoses resulted in exclusion. Main Outcome Measures: Preferences surrounding surgical decision-making identified during thematic analysis. Results: Mean patient age was 12.7 (standard deviation: 3.1). Most had unilateral cleft lip and palate (43.8%). Three themes emerged: Insufficient Understanding of Facial Difference and Treatment, Diversity of Surgical Indications, and Barriers to Patient Autonomy. Almost half of caregivers believed their children understood their clefts, but most of these children failed to provide information about their cleft. Although many patients and caregivers acknowledged that surgery addressed function and/or appearance, patients and caregivers exhibited differences regarding the necessity of surgery. Furthermore, a large proportion of patients believed their opinions mattered in decisions, but less than half of caregivers agreed. Conclusions: Patients with clefts desire to participate in surgical decisions but have limited understanding of their facial difference and surgical indications. Cleft surgeons must educate patients and facilitate shared decision-making.

scholarly journals Facilitators and Barriers to Implementing Standardized Outcome Measurement for Children With Cleft Lip and Palate

2020 ◽  
Vol 58 (1) ◽  
pp. 7-18
Author(s):  
Erica M. Weidler ◽  
Maria T. Britto ◽  
Thomas J. Sitzman
Keyword(s):  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Care Delivery ◽  
Outcome Measurement ◽  
Qualitative Interviews ◽  
Relative Advantage ◽  
Local Context ◽  
Patient Specific ◽  
Cross Sectional ◽  
Facilitators And Barriers

Objective: Identify facilitators and barriers to implementing standardized outcome measurement in cleft care. Design: Cross-sectional, qualitative study. Setting/Participants: Participants included 24 providers and staff from a large, multidisciplinary cleft team in the southwest United States, 5 caregivers of children with cleft palate (with or without cleft lip) treated by this team, and 3 experts involved in implementing a cleft-specific standardized outcome measurement in the United Kingdom. Interventions: Semistructured, qualitative interviews were conducted exploring perceived facilitators and barriers to implementing standardized outcome measurement in cleft care. Interviews were audio-recorded, transcribed, and analyzed for content. The Consolidated Framework for Implementation Research was used to guide the interviews and analysis. The analysis focused on the characteristics of standardized outcome measurement that directly influence its adoption. Results: Participants identified both facilitators and barriers to implementing standardized outcome measurement. Facilitators included the strength and quality of evidence supporting improvements in cleft care delivery following implementation of standardized outcome measurement and the relative advantage of standardized outcome measurement over continuing the status quo. Barriers included the difficulty adapting standardized outcome measurement to meet local context and patient-specific needs and the complexity of implementing standardized outcome measurement. Conclusions: Providers, staff, and caregivers involved in cleft care perceive multiple benefits from standardized outcome measurement, while also recognizing substantial barriers to its implementation. Results from this study can be used to guide development of an implementation strategy for standardized outcome measurement that builds upon perceived strengths of the intervention and reduces perceived barriers.

scholarly journals Influence of Gender, Dispositional Optimism, and Coping Strategies on Appearance-Related Distress Among Swedish Adults With Cleft Lip and Palate

2021 ◽  
pp. 105566562110251
Author(s):  
Anna Paganini ◽  
Martin Persson ◽  
Hans Mark
Keyword(s):  
Coping Strategies ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Dispositional Optimism ◽  
Self Report ◽  
Short Version ◽  
Cross Sectional ◽  
Life Orientation Test ◽  
Self Blame ◽  
And Coping

Objective: To investigate the influence of gender, dispositional optimism, and coping strategies on appearance-related distress among individuals with unilateral cleft lip and palate (UCLP). Design: Cross-sectional design with self-report questionnaires analyzed primarily with Spearman correlations ( r s) and multivariate regression analyses. Setting: A tertiary cleft center in Sweden. Participants: Eighty individuals with UCLP born 1966 to 1986. The mean age for men (n = 50) and women (n = 30) was 38.8 and 37.4 years, respectively. Main Outcome Measures: The Derriford Appearance Scale 24 measured appearance-related distress, the Life Orientation Test–Revised, short version measured dispositional optimism and pessimism, and the Coping Orientation to Problems Experienced, short version included 14 coping strategies. Results: Women had higher appearance-related distress than men, which was significantly ( P < .05) related to self-blame ( r s = 0.59), pessimism ( r s = 0.59), and low optimism ( r s = −0.56). Men’s appearance-related distress was significantly associated with low active coping ( r s = 0.35), low use of emotional support ( r s = 0.29), denial ( r s = 0.39), behavioral disengagement ( r s = 0.41), and pessimism ( r s = 0.28). The only significant gender interaction reflected greater impact of optimism in reducing appearance-related distress for women (β = −0.06). Conclusions: This study showed that high levels of dispositional optimism decrease appearance-related distress, particularly for women. The coping strategies used differed between men and women, and the results suggest that both gender and psychosocial facto r s need to be considered in regard to appearance-related distress among individuals with UCLP in both clinical and research settings. A possible way to decrease distress is to strengthen positive coping strategies and dispositional optimism.

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