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Adaptation to the birth of a child with a congenital anomaly: a prospective longitudinal study of maternal well-being and psychological distress.

https://arctichealth.org/en/permalink/ahliterature259696
Source
Dev Psychol. 2014 Jun;50(6):1827-39
Publication Type
Article
Date
Jun-2014
Author
Ragnhild B Nes
Espen Røysamb
Lars J Hauge
Tom Kornstad
Markus A Landolt
Lorentz M Irgens
Leif Eskedal
Petter Kristensen
Margarete E Vollrath
Source
Dev Psychol. 2014 Jun;50(6):1827-39
Date
Jun-2014
Language
English
Publication Type
Article
Keywords
Birth weight
Checklist
Child, Preschool
Cleft Lip - psychology
Cohort Studies
Down Syndrome - psychology
Female
Gestational Age
Humans
Infant
Infant, Newborn
Male
Models, Statistical
Mother-Child Relations
Mothers - psychology
Norway
Personal Satisfaction
Pregnancy
Stress, Psychological - physiopathology
Abstract
This study explores the stability and change in maternal life satisfaction and psychological distress following the birth of a child with a congenital anomaly using 5 assessments from the Norwegian Mother and Child Cohort Study collected from Pregnancy Week 17 to 36 months postpartum. Participating mothers were divided into those having infants with (a) Down syndrome (DS; n = 114), (b) cleft lip/palate (CLP; n = 179), and (c) no disability (ND; n = 99,122). Responses on the Satisfaction With Life Scale and a short version of the Hopkins Symptom Checklist were analyzed using structural equation modeling, including latent growth curves. Satisfaction and distress levels were highly diverse in the sample, but fairly stable over time (retest correlations: .47-.68). However, the birth of a child with DS was associated with a rapid decrease in maternal life satisfaction and a corresponding increase in psychological distress observed between pregnancy and 6 months postpartum. The unique effects from DS on changes in satisfaction (Cohen's d = -.66) and distress (Cohen's d = .60) remained stable. Higher distress and lower life satisfaction at later assessments appeared to reflect a persistent burden that was already experienced 6 months after birth. CLP had a temporary impact (Cohen's d = .29) on maternal distress at 6 months. However, the overall trajectories did not differ between CLP and ND mothers. In sum, the birth of a child with DS influences maternal psychological distress and life satisfaction throughout the toddler period, whereas a curable condition like CLP has only a minor temporary effect on maternal psychological distress.
PubMed ID
24588521 View in PubMed
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Adolescents with and without a facial difference: The role of friendships and social acceptance in perceptions of appearance and emotional resilience.

https://arctichealth.org/en/permalink/ahliterature142923
Source
Body Image. 2010 Sep;7(4):271-9
Publication Type
Article
Date
Sep-2010
Author
Kristin Billaud Feragen
Ingela L Kvalem
Nichola Rumsey
Anne I H Borge
Author Affiliation
Bredtvet Resource Center, Oslo, Norway. kristin.feragen@statped.no
Source
Body Image. 2010 Sep;7(4):271-9
Date
Sep-2010
Language
English
Publication Type
Article
Keywords
Body Image
Cleft Lip - psychology
Cleft Palate - psychology
Depression - diagnosis - psychology
Emotions
Female
Friends - psychology
Health Surveys
Humans
Male
Norway
Questionnaires
Resilience, Psychological
Sex Factors
Social Adjustment
Abstract
This study investigated the role of friendships and social acceptance in self-perceptions of appearance and depressive symptoms, comparing adolescents with and without a facial difference. Adolescents with a visible cleft (n=196) were compared with adolescents with a non-visible cleft (n=93), and with a comparison group (n=1832). Boys with a visible difference reported significantly more positive perceptions of friendships and less depressive symptoms than the comparison group. These results were interpreted in the context of indicators of emotional resilience. The objective measure of facial difference did not explain levels of depressive symptoms, while subjective measures did. Subjective ratings of appearance mediated the association between social acceptance and depressive symptoms in all samples. Gender did not contribute in explaining the paths between friendships, appearance, and depressive symptoms. The associations between perceptions of social acceptance, appearance, and emotional distress, support the possible utility of strengthening social experiences in preventing and treating appearance-concerns.
PubMed ID
20541483 View in PubMed
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A comparison of health-related quality of life in 5- and 10-year-old Swedish children with and without cleft lip and/or palate.

https://arctichealth.org/en/permalink/ahliterature291353
Source
Int J Paediatr Dent. 2017 Jul; 27(4):238-246
Publication Type
Comparative Study
Journal Article
Multicenter Study
Date
Jul-2017
Author
Anna Lena Sundell
Carl-Johan Törnhage
Agneta Marcusson
Author Affiliation
Department of Paediatric Dentistry, The Institute for Postgraduate Dental Education, Jönköping, Sweden.
Source
Int J Paediatr Dent. 2017 Jul; 27(4):238-246
Date
Jul-2017
Language
English
Publication Type
Comparative Study
Journal Article
Multicenter Study
Keywords
Case-Control Studies
Child
Cleft Lip - psychology
Cleft Palate - psychology
Cross-Sectional Studies
Female
Humans
Male
Quality of Life
Sex Factors
Surveys and Questionnaires
Sweden
Abstract
The current understanding on health-related quality of life (HRQoL) in young Swedish children with cleft lip and/or palate (CL/P) is sparse, and therefore, research on impact of CL/P on HRQoL in children is needed.
To investigate HRQoL in 5- and 10-year-old Swedish children with CL/P in comparison with non-cleft controls. Also to analyse whether there were any differences in HRQoL between children with cleft lip (with or without cleft palate, CL ± P) and cleft palate only (CP) and/or gender differences.
A total of 137 children with CL/P and 305 non-cleft controls participated. HRQoL was measured with KIDSCREEN-52.
All children in the study exhibited HRQoL within or above the age-matched reference interval of the method with similar results in both groups; however, in the dimension 'social support and peers', the 10-year-old children with CL/P perceived lower HRQoL than the non-cleft controls, but it did not reach statistical significance. Type of cleft or gender did not influence HRQoL.
Both 5- and 10-year-old Swedish children with CL/P had HRQoL in the normal reference interval. Their general life situations were well adjusted to their clefts, but the older children with CL/P felt more excluded and less supported by peers.
PubMed ID
27464906 View in PubMed
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General intellectual capacity of young men with cleft lip with or without cleft palate and cleft palate alone.

https://arctichealth.org/en/permalink/ahliterature86174
Source
Scand J Plast Reconstr Surg Hand Surg. 2008;42(1):14-6
Publication Type
Article
Date
2008
Author
Persson Martin
Becker Magnus
Svensson Henry
Author Affiliation
Department of Plastic and Reconstructive Surgery, University of Lund, Malmö University Hospital, Malmö, Sweden. martin@abcdialog.dk
Source
Scand J Plast Reconstr Surg Hand Surg. 2008;42(1):14-6
Date
2008
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adolescent
Adult
Cleft Lip - psychology
Cleft Palate - psychology
Humans
Intelligence Tests - statistics & numerical data
Male
Retrospective Studies
Sweden
Abstract
We report on the general intellectual capacity of men around 17-19 years of age and with cleft lip either with or without cleft palate (CLP) or cleft palate alone. Data were obtained from the Swedish National Service enrollment register for the years 1991-1997, about 335 individuals with CLP and 88 with cleft palate alone, who were compared with a control group consisting of 272 879 people. Those with CLP showed no significant differences compared with the control group. The group with cleft palate alone had significantly lower general intellectual scores than the control group.
PubMed ID
18188777 View in PubMed
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Parent and child ratings of satisfaction with speech and facial appearance in Flemish pre-pubescent boys and girls with unilateral cleft lip and palate.

https://arctichealth.org/en/permalink/ahliterature129237
Source
Int J Oral Maxillofac Surg. 2012 Feb;41(2):192-9
Publication Type
Article
Date
Feb-2012
Author
K M Van Lierde
E. Dhaeseleer
A. Luyten
K. Van De Woestijne
H. Vermeersch
N. Roche
Author Affiliation
Department of Otorhinolaryngology, Logopaedics and Audiology, University Ghent, Belgium. Kristiane.vanlierde@ugent.be
Source
Int J Oral Maxillofac Surg. 2012 Feb;41(2):192-9
Date
Feb-2012
Language
English
Publication Type
Article
Keywords
Adolescent
Articulation Disorders - psychology
Attitude to Health
Case-Control Studies
Child
Cleft Lip - psychology
Cleft Palate - psychology
Esthetics
Esthetics, Dental
Face - anatomy & histology
Female
Finland
Hearing - physiology
Humans
Interpersonal Relations
Lip - anatomy & histology
Male
Nose - anatomy & histology - physiology
Parents - psychology
Patient satisfaction
Personal Satisfaction
Phonetics
Respiration
Self Concept
Speech - physiology
Speech Intelligibility
Speech Therapy
Voice Disorders - psychology
Abstract
The purpose of this controlled study is to determine satisfaction with speech and facial appearance in Flemish pre-pubescent children with unilateral cleft lip and palate. Forty-three subjects with unilateral cleft lip and palate and 43 age and gender matched controls participated in this study. The Cleft Evaluation Profile was used to assess the perceived satisfaction for individual features related to cleft care. Both the cleft palate subjects and their parents were satisfied with the speech and facial appearance. The Pearson ?(2) test revealed significant difference between the cleft palate and the control group regarding hearing, nasal aesthetics and function, and the appearance of the lip. An in depth analysis of well specified speech characteristics revealed that children with clefts and their parents significantly more often reported the presence of an articulation, voice and resonance disorder and experienced /s/ /r/ /t/ and /d/ as the most difficult consonants. To what extent the incorporation of specific motor oriented oral speech techniques regarding the realisation of specific consonants, attention to vocal and ear care, and the recommendation of secondary velopharyngeal surgery, with the incorporation of primary correction of the cleft nose deformity simultaneously with primary lip closure, will aid these patients are future research subjects.
PubMed ID
22126855 View in PubMed
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Parents' experiences of having a child with cleft lip and palate.

https://arctichealth.org/en/permalink/ahliterature30284
Source
J Adv Nurs. 2004 Jul;47(2):165-73
Publication Type
Article
Date
Jul-2004
Author
Barbro Johansson
Karin C Ringsberg
Author Affiliation
Karolinska Institute, IHCAR, Stockholm, Sweden.
Source
J Adv Nurs. 2004 Jul;47(2):165-73
Date
Jul-2004
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adult
Attitude of Health Personnel
Attitude to Health
Child, Preschool
Cleft Lip - psychology
Cleft Palate - psychology
Female
Humans
Infant
Infant, Newborn
Male
Parents - psychology
Professional-Family Relations
Social Support
Sweden
Abstract
BACKGROUND: Giving birth to a child with cleft lip and palate (CLP) can be emotionally traumatic for parents. The facial appearance awakens feelings and reactions in the family and other people. Feeding these children in the neonatal period is known to be difficult. Previous research has mainly dealt with visual defects, feeding and speech problems. There is a lack of studies about parents' experiences of having a child with CLP. AIMS: This study was performed to investigate parents' experiences of having a child born with a cleft lip or CLP, and how they perceive encouragement and social and mental support from professionals, family and friends. METHOD: A phenomenographic approach was used. The study was performed at a university hospital in central Sweden. Twenty families (20 mothers and 12 fathers) were interviewed using guided interviews. FINDINGS: Two categories, consisting of three and two subcategories, emerged. Informants described their experiences of having a child with CLP, how they slowly adapted to this situation, the first meeting with their child, support from professionals, and reactions from family and other people. Parents commented on the craniofacial team with satisfaction. Due to a low level of knowledge, other professionals often had difficulty in handling the situation and a poor quality of advice on feeding was reported. Family and friends commented on the child positively or by being neutral, which was seen as a lack of interest. A visible scar on the face was seen as a problem, especially for girls. Most informants expressed anxiety about possible problems with speech. CONCLUSIONS: Parents did not look upon their child as handicapped but as having a congenital defect or 'flaw'. The findings of this study could be used in staff education to promote understanding of parents' experiences and how best to help them. They could also be used in the general media to improve public understanding. Future research could explore staff perceptions of this sensitive clinical area.
PubMed ID
15196190 View in PubMed
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Psychiatric Diagnoses in Individuals with Non-Syndromic Oral Clefts: A Danish Population-Based Cohort Study.

https://arctichealth.org/en/permalink/ahliterature284015
Source
PLoS One. 2016;11(5):e0156261
Publication Type
Article
Date
2016
Author
Dorthe Almind Pedersen
George L Wehby
Jeffrey C Murray
Kaare Christensen
Source
PLoS One. 2016;11(5):e0156261
Date
2016
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Child
Child, Preschool
Cleft Lip - psychology
Cleft Palate - psychology
Cohort Studies
Denmark - epidemiology
Female
Humans
Infant
Male
Mental Disorders - epidemiology
Middle Aged
Proportional Hazards Models
Registries
Young Adult
Abstract
The aim of this study was to investigate the risk of psychiatric diagnoses in individuals with non-syndromic oral clefts (OC) compared with individuals without OC, including ages from 1 to 76 years.
Linking four Danish nationwide registers, we investigated the risk of psychiatric diagnoses at Danish psychiatric hospitals during the period 1969-2012 for individuals born with non-syndromic OC in Denmark 1936-2009 compared with a cohort of 10 individuals without OC per individual with OC, matched by sex and birth year. The sample included 8,568 individuals with OC, observed for 247,821 person-years, and 85,653 individuals without OC followed for 2,501,129 person-years.
A total of 953 (11.1%) of the individuals with OC (9.6% for cleft lip (CL), 10.8% for cleft lip and palate (CLP) and 13.1% for cleft palate (CP)) and 8,117 (9.5%) in the comparison group had at least one psychiatric diagnosis. Cox proportional hazard regression model revealed that individuals with OC had significantly higher risk of a psychiatric diagnosis (hazard ratio (HR) = 1.19, 95% CI: 1.12-1.28). When examining cleft type, no difference was found for CL (HR = 1.03, 95% CI: 0.90-1.17), but CLP was associated with a small increased risk (HR = 1.13, 95% CI: 1.01-1.26), whereas individuals with CP had the largest increased risk (HR = 1.45, 95% CI: 1.30-1.62). The largest differences were found in schizophrenia-like disorders, mental retardation and pervasive developmental disorders, but we found no increased risk of mood disorders and anxiety-related disorders.
Individuals with non-syndromic OC had significantly higher risk of psychiatric diagnoses compared with individuals without OC. However, the elevated risk was observed for individuals with CLP and CP but not for individuals with CL and the absolute risk increase was modest.
Notes
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PubMed ID
27223812 View in PubMed
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Psychosocial adjustment in Norwegian adults who had undergone standardised treatment of complete cleft lip and palate. II. Self-reported problems and concerns with appearance.

https://arctichealth.org/en/permalink/ahliterature46480
Source
Scand J Plast Reconstr Surg Hand Surg. 1995 Dec;29(4):329-36
Publication Type
Article
Date
Dec-1995
Author
T. Ramstad
E. Ottem
W C Shaw
Author Affiliation
Department of Plastic Surgery, Rikshospitalet, Oslo, Norway.
Source
Scand J Plast Reconstr Surg Hand Surg. 1995 Dec;29(4):329-36
Date
Dec-1995
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adult
Cleft Lip - psychology - surgery
Cleft Palate - psychology - surgery
Female
Humans
Male
Norway
Quality of Life
Research Support, Non-U.S. Gov't
Sex Distribution
Social Adjustment
Abstract
Aspects of social and psychological adjustment were investigated in a sample of 233 Norwegian adults 20-35 years old with repaired complete cleft lip and palate (CLP); in 126 the cleft was on the left, in 45 on the right, and in 62 it was bilateral. All subjects received a standardised regimen of care from the Oslo cleft palate team. The study, based on response to a questionnaire, partly copied a national survey of social and economic life in the Norwegian population. Adults with complete clefts were compared with a large control sample of the same age. The purpose of this paper is to describe the occurrence of common psychological problems among subjects with CLP. Anxiety, depression, and palpitations were reported about twice as often by subjects with CLP compared with controls, and these psychological problems were strongly associated with concerns about appearance, dentition, speech, and desire for further treatment. These findings suggest that there is an impaired level of psychological wellbeing among subgroups of subjects with clefts.
PubMed ID
8771260 View in PubMed
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A psychosocial study of Icelandic individuals with cleft lip or cleft lip and palate.

https://arctichealth.org/en/permalink/ahliterature74056
Source
Cleft Palate J. 1987 Apr;24(2):152-7
Publication Type
Article
Date
Apr-1987
Author
A. Bjornsson
S. Agustsdottir
Source
Cleft Palate J. 1987 Apr;24(2):152-7
Date
Apr-1987
Language
English
Publication Type
Article
Keywords
Adult
Attitude to Health
Cleft Lip - psychology
Cleft Palate - psychology
Consumer Satisfaction
Female
Humans
Iceland
Male
Marriage
Research Support, Non-U.S. Gov't
Self Concept
Sex Factors
Social Adjustment
Abstract
Questionnaires were sent to 63 Icelandic individuals with cleft lip and cleft lip and palate who had undergone surgical repair of those defects. The questions focused on the following areas: social characteristics, clinical characteristics, attitudes toward consequences of clefts, and attitudes toward appearance and treatment. The CL and CLP groups were compared, as were females and males. A comparison group was used with respect to two social factors. The data indicated relatively good psychosocial adjustment. However, fewer individuals were married or living together in the cleft group than in the comparison group. The subjects did not perceive that cleft lip or palate had influenced their lives to a great extent, yet females seemed to be more self-conscious than males in respect to how others viewed their appearance. Overall, the subjects were satisfied with the treatment and the members of the treatment team. However, their expectations exceeded the actual outcome of surgery. Suggestions are offered for future research.
PubMed ID
3472689 View in PubMed
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14 records – page 1 of 2.