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Impact of cleft lip and/or palate in children on family quality of life before and after reconstructive surgery
Abstract
BACKGROUND: The aim of the study was to evaluate the impact of cleft lip/palate children together with con- sequent treatment on quality of family life using standardized questionnaire. Different to previous studies the evaluation of quality of family life by questionnaire was realized twice in the same group of families (before the reconstructive surgery and several months after palatoplasty).
METHODS: The study was conducted in 40 families divided in two groups: 20 families with children with cleft lip (CL), 20 families with children with cleft lip and palate (CLP). The questionnaire of the Impact on Family Scale was used for evaluation of the influence of orofacial clefts on parent ́s quality of life. Evaluations were made at the second month of child ́s life and at one year of child ́s life with reciprocally comparison.
RESULTS: The higher impact of children with CLP on quality of family life was noted at 2 months and 1 year of child’s age as compared to the impact of children with CL. The reduction of impact on quality of life after surgical correction was observed in families of children with CL at one year of child’s age. This decrease of influence on family quality of life was due to significantly lower impact in strain and economic dimensions in families with CL children after operation. However, in the group of families with CLP children no significant changes in the impact on family quality of life were noted when compared to the values before and shortly after the reconstructive surgery.
CONCLUSIONS: This study showed that orofacial clefts in children influence markedly the quality of their family life. The higher impact of children with CLP on quality of family life as compared to children with CL was noted and this impact in CLP group was not influenced shortly after reconstructive surgery. It is suggested that ap- propriate medical care in Cleft Centre with special psychological support may lead to improvement in quality of life for families with cleft lip and palate children (Tab. 2, Fig. 2, Ref. 14). Text in PDF www.elis.sk.
KEY WORDS: cleft lip, cleft palate, quality of life, the impact in family scale.

... Several studies in different age-groups have stated that CL/P has a significant impact on the health-related quality of life (HRQoL; Locker et al., 2005;Broder et al., 2012;Ward et al., 2013;Queiroz et al., 2015). However, few studies exist in infants about the possible influence of the surgical treatment of the CL/P on the HRQoL (Emeka et al., 2017;Macho et al., 2017). The primary surgical treatment of CL/P is a common procedure that involves primary surgical repair of the CL/P (Hodgkinson et al., 2005;Farronato et al., 2014) and according to the clinical practice guide for the diagnosis and treatment of CL/P of the Instituto Nacional de Salud del Nin˜o (INSN) San Borja-Peru (2017). ...
... Akinmoladun and Obimakinde (2009) reported that both mothers and fathers placed CL/P surgery as a major concern after receiving the diagnosis. It is suggested that adequate medical care with special psychological support can improve the quality of life of families with children with CL/P (Belucci & Genaro, 2016;Macho et al., 2017). It should be mentioned that the studies found are mostly aimed at evaluating the quality of life related to health (HRQoL) according to the perception of the family and the self-perception of the individual with CL/P, so in this study it was suggested to apply for first time the P-ECOHIS, validated in the Peruvian population, which assesses the impact of OHR-QoL in children younger than 5 years, through 2 sections, one concerning the impact in the child and the other impact in the family, with a more complete vision and integrating both basic nuclei of the family (Fernandes et al., 2017;Zeraatkar et al., 2018;Sawai et al., 2020). ...
... This could be due to more severe functional limitations in patients with CP or CLP who require additional medical attention, such as orthodontics or speech therapy. Macho et al. (2017) reported a greater impact of CLP compared to the influence of children with only CL. Abbreviations: CL/P, cleft lip and/or palate; IR, interquartil range; SD, standard deviation; SE, standardized effect sizes (baseline and 12th month of follow-up); mean score change: mean of the difference between scores of the baseline and 12th month of follow-up; P-ECOHIS, Peruvian version of the Early Childhood Oral Health Impact Scale. ...
Objective
To assess oral health-related quality of life (OHRQoL) changes before and after the primary surgical treatment in infants with cleft lip and/or palate (CL/P).
Design
Quasi-experimental study.
Methods
A total of 106 infants with CL/P younger than 2 years undergoing primary surgical treatment in the Plastic Surgery Service of the Instituto Nacional de Salud del Niño in Peru. The parent/caregiver answered a questionnaire about OHRQoL named the Peruvian version of the Early Childhood Oral Health Impact Scale (P-ECOHIS) in the pretreatment (baseline) and follow-up post-treatment. The total score of P-ECOHIS and their 2 sections (child impact and family impact) in the baseline and each follow-up period post-treatment scores were assessed. As well as, the type of the CL/P on OHRQoL, standardized effect sizes (ES) based on mean total change scores (difference between baseline and 12th month) were analyzed.
Results
Improvements in infant’s OHRQoL after treatment were reflected in each follow-up period P-ECOHIS score compared to the baseline score. The total P-ECOHIS scores decreased significantly from 28.07 (baseline) to 7.7 (12th month; P < .0001), as did the individual domain scores ( P < .0001). There were significant differences in the baseline and follow-up post-treatment scores of infants who reported improvement of the OHRQoL ( P < .0001). The ES was large (3.79). The cleft lip had an improvement in the OHRQoL at 12th month post-treatment ( P < .0001).
Conclusions
Primary surgical post-treatment resulted in significant improvement of the infant’s OHRQoL with CL/P.
... 23,48,[58][59][60][61][62][63][64] In contrast, other studies identified elevated stress, anxiety, and depression, alongside more symptoms of emotional difficulties, posttraumatic stress and decreased quality of life. 23,35,47,63,[65][66][67][68][69][70] Three studies identified elevated postnatal depression scores in mothers, 24,43,71 with 11.7 percent of mothers reporting scores above the clinical cutoff in one study. 24 Mothers in this sample also reported feeling anxious, scared and sad, with 1.5% endorsing minor intent for self-harm. ...
... 24,28,59,62,66,73,74 A positive life orientation was identified to protect parents from psychological distress. 66 Five studies found no variations in parental well-being according to cleft type, 23,37,59,66,75 while others identified a higher impact of cleft lip and palate compared to cleft lip or cleft palate only, 37,65,68,73,76 or a reduced impact for those with cleft lip only. 58,77 Mothers scored significantly less favourably than fathers on measures of mental health in some studies. ...
Raising a child with healthcare needs places additional demands on caregivers. In 2012, Nelson and colleagues authored a review of 57 papers pertaining to parents' experiences of caring for a child with cleft lip and/or palate (CL/P). Thanks in large part to this review, available literature on this topic has grown considerably. The aim of the present review was to update and critically appraise recent literature, with the wider goal of assessing progress in the field and setting recommendations for future work. All original, peer-reviewed articles pertaining to the psychological adjustment of parents of children with CL/P living in high-income countries (published May 2009 to May 2024) were examined. A total of 126 articles were included. Findings were narratively synthesised according to three salient themes: Emotional Impact; Social Experiences; and Care Delivery. Recent research has built on Nelson et al.'s recommendations, addressing some prior gaps in knowledge. Nonetheless, some areas remained largely unexplored and critical methodological limitations were still evident. Recommendations for clinical practice include: improved informational resources for parents and non-specialist health professionals, regular audit of services in collaboration with parents and families, routine psychological screening for known risk factors and integrated psychological support from diagnosis onward. Recommendations for future research include the design of multicentre, prospective, longitudinal studies with sufficient sample sizes and appropriate control/reference groups, inclusion of families from diverse ethnic and socioeconomic backgrounds, further examination of factors contributing to psychological growth, the development and evaluation of psychological interventions, and cross-condition learning.
... After surgery, they observed a significant reduction in the negative impact on parents' QoL, particularly in the social and personal domains. This supports the idea that surgery represents an important step in the care pathway for children with CLP and their families [6,10]. ...
Objective: This study aimed to assess the quality of life (QoL) of parents/caregivers of children with cleft lip and palate (CLP) using the Impact on Family Scale (IOFS).Methods: Families of children requiring primary or secondary CLP repair were recruited based on the inclusion criteria. The IOFS questionnaire was utilized to assess perceived QoL. Multiple logistic regression was employed to determine factors linked to impacted QoL.Results: Out of the 192 families contacted, 177 participated (92.2%). The patients had a mean age of 8.9 ± 5.4 months, with a majority of families residing in rural areas (67.2%). The questionnaires assessed QoL before surgery, revealing a mean total QoL score of 68.8 ± 19.4, with 49.7% of families experiencing affected QoL. The analysis demonstrated a significant association between the female sex of parents/caregivers and a more impacted QoL (p = 0.018), as well as between the absence of a history of CLP in the family and a more affected QoL (adjusted odds ratio = 3.0; 95% CI: 1.3 – 6.7; p = 0.008).Conclusion: Caring for a child with CLP significantly decreases parents/caregivers’ QoL in all domains. The results emphasize the significance of considering the family history of CLP and the gender of the parents in the comprehensive care of affected families.
... After surgery, they observed a significant reduction in the negative impact on parents' QoL, particularly in the social and personal domains. This supports the idea that surgery represents an important step in the care pathway for children with CLP and their families [6,10]. ...
Objective: This study aimed to assess the quality of life (QoL) of parents/caregivers of children with cleft lip and palate (CLP) using the Impact on Family Scale (IOFS).Methods: Families of children requiring primary or secondary CLP repair were recruited based on the inclusion criteria. The IOFS questionnaire was utilized to assess perceived QoL. Multiple logistic regression was employed to determine factors linked to impacted QoL.Results: Out of the 192 families contacted, 177 participated (92.2%). The patients had a mean age of 8.9 ± 5.4 months, with a majority of families residing in rural areas (67.2%). The questionnaires assessed QoL before surgery, revealing a mean total QoL score of 68.8 ± 19.4, with 49.7% of families experiencing affected QoL. The analysis demonstrated a significant association between the female sex of parents/caregivers and a more impacted QoL (p = 0.018), as well as between the absence of a history of CLP in the family and a more affected QoL (adjusted odds ratio = 3.0; 95% CI: 1.3 – 6.7; p = 0.008).Conclusion: Caring for a child with CLP significantly decreases parents/caregivers’ QOL in all domains. The results emphasize the significance of considering the family history of CLP and the gender of the parents in the comprehensive care of affected families.
... While generally not in the range of clinical distress, research has indicated that parents of children with CL/P may be more likely than the general population to experience parenting stress (Boztepe et al., 2020;Stock et al., 2020), as well as symptoms of post-traumatic stress (Despars et al., 2011) and postpartum depression (Grollemund et al., 2020). Further, parenting a child with CL/P can affect overall familial quality of life (QoL; Antunes et al., 2014;Macho et al., 2017;Emeka et al., 2017). The first year of the child's life, particularly around the time of primary surgery, can be an especially demanding and stressful time for new parents de Cuyper et al., 2019;Nur Yilmaz et al., 2019). ...
Objectives
Previous literature finds that having a child with a cleft lip and/or palate (CL/P) may pose social and emotional challenges for parents. For parents of children born during the Covid-19 pandemic, such challenges may be heightened. Further, novel demands brought about by the pandemic could have caused additional hardships. The aim of this study was to describe the impact of the pandemic on new parents through qualitative exploration of their experiences.
Design
Semi-structured interviews were conducted with 14 parents of children born in the United Kingdom with CL/P between January and June 2020, around the start of the pandemic. Data were analysed using inductive thematic analysis.
Results
Three themes, with sub-themes, were identified. The first theme, “ Changes to Healthcare: The Impact of Restrictions and Reduced Contact”, discussed the impact of the pandemic on perinatal care, the care received from the specialist CL/P teams, and parents’ experiences of virtual consultations. The second theme, “Family Functioning During the Pandemic”, covered parental anxiety, fathers’ experiences, and social support. The third theme, “ Surgical Prioritisation: Delays and Uncertainty”, addressed changes to surgical protocols, coping with uncertainty, complications associated with delayed surgery, and how parents created positive meaning from this period.
Conclusions
A range of increased and additional psychosocial impacts for parents were identified, along with several coping strategies, utilization of social support, and the positive aspects of their experiences. As the pandemic continues, close monitoring of families affected by CL/P remains imperative, particularly for those at risk of emotional distress.
Objective
Caregivers of children with chronic conditions can experience psychological distress and an impact on quality of life (QoL). Cleft lip and/or palate (CL/P) is one of the most common congenital conditions worldwide. Utilizing data extracted from The Cleft Collective cohort studies in the United Kingdom, this study investigated longitudinal psychological well-being in caregivers of young children with CL/P, to inform screening practices and early intervention.
Methods
Baseline (post-diagnosis) and 5-year questionnaire data were extracted for 525 caregivers (342 biological mothers, 183 fathers/partners). Outcome measures included the PedsQL-Family Impact Module, the Perceived Stress Scale, and the Hospital Anxiety and Depression Scale.
Results
QoL significantly improved from T1 (post-birth) to T2 (5 years) as reported by mothers and fathers/partners. At T2, scores on all measures were aligned with, or more favorable than, norms. A minority continued to report clinically significant levels of distress at 5 years. Predictors of poorer outcomes on all measures included a less positive life orientation, more negative appraisals of CL/P, less favorable baseline scores, lower healthcare satisfaction, and prior mental health conditions. Outcomes were also less favorable for caregivers of children with combined cleft lip and palate compared to other cleft types. Reductions in negative appraisals of CL/P were significantly associated with improved QoL over time.
Conclusions
QoL and psychological well-being in caregivers is generally positive at 5 years. A minority experienced poorer outcomes and routine assessment by a multidisciplinary team is therefore recommended. Targeting early negative appraisals may help to facilitate long-term caregiver adjustment.
Objective
To assess the quality of life of parents of patients with cleft lip and/or palate (CL/P) undergoing cheiloplasty or palatoplasty in the pre and/or postoperative periods.
Design
This is a mixed method study. The sample consisted of parents/guardians of non-syndromic patients with CL/P undergoing treatment in the University Hospital of Western Paraná in Brazil. Data were collected from February 2022 to December 2023 and included demographic information, the Impact on Family Scale (33 items) to assess quality of life, and semi-structured interviews, followed by content analysis.
Results
Caregivers’ (N = 116) quality of life was generally in the middle to high range and similar across pre and postoperative time points. The most frequent topics identified in interviews were financial difficulties, time required for childcare, esthetic concerns, feeding, phonation, and integration of children into social environments with improvements reported after surgeries.
Conclusion
Quality of life of caregivers was similar across pre and postoperative periods and content analysis highlighted improvements in psychosocial and functional aspects. Early follow-up with specialized services is recommended to improve the quality of life of caregivers of children with CL/P.
Objective
To synthesize research exploring the impact of surgery on quality of life (QoL) in families of children with a cleft lip and/or palate (CL/P).
Design
Medline, PsycINFO, CINAHL, and ProQuest databases were systematically searched (from database inception to July 2024) to identify studies exploring QoL in families following surgery for a child with CL/P. Studies were quality appraised using Quality Assessment for Diverse Studies criteria, and a narrative synthesis was undertaken.
Main Outcome Measure: Quality of life was explored but specific measures varied across studies.
Interventions: Type of surgery being investigated varied across the reviewed studies. This systematic review focussed on both functional and aesthetic surgeries throughout childhood.
Results
Of 157 identified studies, 9 were eligible for inclusion (1 mixed-methods, 1 observational, 1 qualitative, 2 cross-sectional, 4 quasi-experimental). Analysis indicated that QoL was positively impacted by surgery through reduced financial burden, increased sense of mastery/coping, and reduced social impact. However, for some families, new demands (eg, medical/dental appliances, food restrictions), intolerance of uncertainty, and adjustment to changes to their child's appearance were identified following surgery.
Conclusions
There is limited qualitative and quantitative research exploring the impact of a child's cleft surgery on family QoL. The quality of studies included in the review was variable. Supporting families accessing cleft services, especially where QoL and mental health are negatively impacted, is important. Due to the variability within and between the studies, and lack of detail relating to rationale and processes taken, the conclusions from this review are tentative. Further research is needed that addresses methodological and conceptual limitations.
Objectives
To determine the UK prevalence of behavioral problems in 5-year-old children born with isolated or syndromic cleft lip and/or palate (CL/P) compared to the general population and identify potentially associated factors.
Design
Observational study using questionnaire data from the Cleft Collective 5-Year-Old Cohort study and three general population samples.
Main Outcome Measure
The Strengths and Difficulties Questionnaire (SDQ).
Participants
Mothers of children (age: 4.9-6.8 years) born with CL/P ( n = 325). UK general population cohorts for SDQ scores were: Millennium Cohort Study (MCS) ( n = 12 511), Office of National Statistics (ONS) normative school-age SDQ data ( n = 5855), and Avon Longitudinal Study of Parents and Children (ALSPAC) ( n = 9386).
Results
By maternal report, 14.2% of children born with CL/P were above clinical cut-off for behavioral problems, which was more likely than in general population samples: 7.5% of MCS (OR = 2.05 [1.49-2.82], P < 0.001), 9.8% of ONS (OR = 1.52 [1.10-2.09], P = 0.008), and 6.6% of ALSPAC (OR = 2.34 [1.70-3.24], P < 0.001). Children in the Cleft Collective had higher odds for hyperactivity, emotional and peer problems, and less prosocial behaviors. Maternal stress, lower maternal health-related quality of life and family functioning, receiving government income support, and maternal smoking showed evidence of association (OR range: 4.41-10.13) with behavioral problems, along with maternal relationship status, younger age, and lower education (OR range: 2.34-3.73).
Conclusions
Findings suggest elevated levels of behavioral problems in children born with CL/P compared to the general population with several associated maternal factors similar to the general population.
Many surgical procedures used to treat patients with unilateral complete cleft lip do not include a complete primary rhinoseptoplasty, which is delayed until the end of growth as part of secondary surgery. Primary cheilorhinoseptoplasty using the Talmant technique has been performed at Lapeyronie University Hospital, Montpellier for 15 years. This retrospective study evaluated and compared the functional and aesthetic results obtained in such patients at 4–6 years after surgery with those obtained without primary rhinoseptoplasty in patients undergoing the Tennison–Malek technique. This study included a cohort of 60 children who presented a unilateral complete cleft lip: 29 were operated on with the Tennison–Malek technique and 31 with the Talmant technique. Three functional and 14 aesthetic criteria were evaluated. All functional criteria showed better results in the Talmant group: nocturnal nasal breathing (P < 0.001), incidence of closed rhinolalia (P = 0.0019), and presence of asymmetric nasal breathing (P < 0.001). Concerning the aesthetic results, all criteria evaluated on the frontal and basal photographs of each patient showed significantly better results in the Talmant technique group. The rate of satisfactory results was> 75% for 12 of the 14 criteria in the Talmant group, compared with none of the 14 criteria in the Tennison–Malek group.
Context: Cleft Lip and Palate (CL/P) is the most common craniofacial malformation in the oral cavity, with a prevalence of “1 to 2in 1,000 live births worldwide. Parents with CL/P children are more prone to experience emotional disorders, especially depression, and have higher child-related stress than the parents of normal children. Due to the effect of the mental status of parents on children, the assessment of the psychological aspects of this problem and its effects on the patients and their parents is critical. Evidence Acquisition: This systematic review was carried out to determine the quality of life (QoL) and emotional problems, including anxiety and depression, in the mothers of CL/P children. All the published studies were searched in three electronic databases, including MEDLINE, PubMed, and Web of Science, up to December 30, 2020, using the keywords "Orofacial Clefts” and “Cleft Lip and Palate” in combination with “Anxiety," "Stress," "Depression," and "Quality of Life” in addition to “Parents," "Mothers," "Fathers," and "Caregivers." Results: Finally, 29 articles met the eligibility criteria for this review. Due to the differences in health care and culture, controversial findings were obtained on the QoL of parents with CL/P children. Social support plays a vital role in the prevention, resolution, and treatment of psychological problems of parents with CL/P children. The majority of studies confirmed the higher levels of anxiety and depression in caregivers of children with CL/P than in normal individuals. Conclusions: These findings emphasize the necessity of psychological screening in the first few months following the diagnosis to facilitate providing appropriate psychological support for parents with CL/P children.
Objectives: to understand the psychosocial implications experienced by caregiving parents, resulting from the care of the child with cleft lip and/or palate associated with the syndrome. Methods: a cross-sectional and qualitative study, guided by the Consolidated Criteria for Reporting Qualitative Research tool, carried out between January and May 2019. Data collection was carried out through semi-structured interviews that were audio-recorded and transcribed in full. Thematic content analysis was used as the methodological framework and Symbolic Interactionism as the theoretical framework. Results: the participants were 16 caregiving parents. Four categories were listed: implications for diagnosis and treatment initiation, implications for financial issues and paid activities, implications for the care process, and implications for access to health resources. Conclusion: it was found that psychosocial implications experienced by these informal caregivers are multifaceted and complex, and that knowing them will enable planning and implementation of actions that contribute, in addition to the children's rehabilitation process, to the health and quality of life of those who care.
PurposeTo quantify and understand how to assess the quality of life and health-related QoL of parents with children with congenital abnormalities.Methods
We conducted a systematic review with meta-analysis. The search was carried out in 5 bibliographic databases and in ClinicalTrials.gov. No restriction on language or date of publication was applied. This was complemented by references of the studies found and studies of evidence synthesis, manual search of abstracts of relevant congresses/scientific meetings and contact with experts.We included primary studies (observational, quasi-experimental and experimental studies) on parents of children with CA reporting the outcome quality of life (primary outcome) of parents, independently of the intervention/exposure studied.ResultsWe included 75 studies (35 observational non-comparatives, 31 observational comparatives, 4 quasi-experimental and 5 experimental studies). We identified 27 different QoL instruments. The two most frequently used individual QoL instruments were WHOQOL-Bref and SF-36. Relatively to family QoL tools identified, we emphasized PedsQL FIM, IOFS and FQOL. Non-syndromic congenital heart defects were the CA most frequently studied. Through the analysis of comparative studies, we verified that parental and familial QoL were impaired in this population.Conclusions
This review highlights the relevance of assessing QoL in parents with children with CA and explores the diverse QoL assessment tools described in the literature. Additionally, results indicate a knowledge gap that can help to draw new paths to future research. It is essential to assess QoL as a routine in healthcare providing and to implement strategies that improve it.
We describe the case of a 32-year-old man with repaired cleft lip complaining of sexual difficulties, which were determined to be multifactorial in origin. A negative body impression, anatomical difficulty in engaging in sexual acts, the indirect impact of secondary complications of cleft lip, and the negative perception of his dysmorphia from potential sexual partners led to his current state. Cleft lip and palate (CLP) are the most common malformations of the craniofacial region. The malformations of anatomical structures involved in CLP can manifest through several variations of clinical features and phenotypes, typically affecting hearing, social integration, speech, and feeding. From birth to the end of growth, a multidisciplinary approach involving orthodontists, speech therapists, psychologists, and social workers is essential for adequate management, even after surgical repair. This case report illustrates the critical importance of the functionality of normal lips essential for sexual function and psychosocial issues encountered in a patient with repaired cleft lip, as this issue likely has a higher prevalence than the literature actually suggests. Adding a psychiatrist on the panel for pediatric reconstructive surgery teams and post-repair rehabilitation would be essential to managing potential sexual and psychological issues into adulthood.
Craniofacial development comprises a complex process in humans in which failures or disturbances frequently lead to congenital anomalies. Cleft lip with/without palate (CL/P) is a common congenital anomaly that occurs due to variations in craniofacial development genes, and may occur as part of a syndrome, or more commonly in isolated forms (non-syndromic). The etiology of CL/P is multifactorial with genes, environmental factors, and their potential interactions contributing to the condition. Rehabilitation of CL/P patients requires a multidisciplinary team to perform the multiple surgical, dental, and psychological interventions required throughout the patient’s life. Despite progress, lip/palatal reconstruction is still a major treatment challenge. Genetic mutations and polymorphisms in several genes, including extracellular matrix (ECM) genes, soluble factors, and enzymes responsible for ECM remodeling (e.g., metalloproteinases), have been suggested to play a role in the etiology of CL/P; hence, these may be considered likely targets for the development of new preventive and/or therapeutic strategies. In this context, investigations are being conducted on new therapeutic approaches based on tissue bioengineering, associating stem cells with biomaterials, signaling molecules, and innovative technologies. In this review, we discuss the role of genes involved in ECM composition and remodeling during secondary palate formation and pathogenesis and genetic etiology of CL/P. We also discuss potential therapeutic approaches using bioactive molecules and principles of tissue bioengineering for state-of-the-art CL/P repair and palatal reconstruction.
Background:
Cleft lip and/or palate (CL/CP/CLP) is one of the most common congenital anomalies. Children may suffer from a variety of health problems including difficulties with feeding and speech, middle ear problems, hearing loss and associated psychosocial concerns. The extent of impact of this disorder on the parents, however, has not yet been thoroughly evaluated. This pilot study was performed to evaluate the impact of having a child with CL/CP/CLP on the parents' quality of life (QoL) and family functioning and to compare between cleft subgroups.
Methods:
Forty-five parents with children aged 6 months to 6 years with CL/CP/CLP, followed by the multidisciplinary orofacial cleft team of Ghent University Hospital, completed following standardized questionnaires: Impact on Family Scale (IOFS), Family Impact Scale (FIS) and Care-Related Quality of Life Instrument (CarerQoL). Subgroups were compared with diverse unpaired statistical tests.
Results:
Younger children (6m-2y) with CL/CP/CLP entail more impact on parental QoL compared to children aged 2-4y old (p=0.04, ε²=0.15/p=0.02, ε²=0.17/p=0.02, ε²=0.17). Families from children with a syndromic cleft also encounter more impact (p=0.04, r=0.32 /p=0.01, r=0.37 /p=0.008, r=0.40/p=0.003, r=0.45). Prenatal orofacial cleft diagnosis is associated with a higher reporting of family conflicts (p=0.04, r=0.32). In case of non-syndromic clefts, families having children with CLP report more family conflicts compared to CL or CP (p=0.02, ε²=0.46). Parental education and number of children within the household showed no significant impact on parental QoL.
Conclusion:
This cross-sectional study confirms that having a child with CL/CP/CLP impacts the parental QoL. This study was performed as a pilot-study for larger multicentre studies, future development of effective screening tools and identification of subgroups at risk. Long-term multidisciplinary follow-up should involve family-centred support.
Objective:
This study was designed to identify variables affecting family functions and life quality of parents with cleft lip and/or palate children.
Materials and methods:
Family Assesment Scale (FAS) and short form of World Health Organization quality of life (WHOQOL-BREF-TR) were used to measure family functions and life quality of parents. Questionnaire Forms were given to 146 parents: 74 having cleft lip and/or palate children (cleft-group), and the other 72 with healthy children (control-group). Parents were divided into 3 subgroups according to children's age as 0 to 6, 7 to 12, and 13 to 18 years. Kruskal-Wallis and Mann-Whitney U tests were used to evaluate differences between the groups.
Results:
Behavior of cleft patients' parents was found to be problematic in behavioral control, required attention and role areas at 0 to 6 years, required attention area at ages 7 to 12 and 13 to 18 years. When compared to control group, significant differences were detected in required attention at ages 0 to 6 years, problem-solving, and communication areas at 7 to 12 years. Findings of life quality were found to be over medium level in physical, social, psychological and environmental areas in cleft group at all age groups; however, life quality was found better in control group in physical, psychological, and social subtests at age 13 to 18 years.
Conclusion:
Cleft children influence family functions in behavioral control, required attention and role areas at early childhood, and continue to affect required attention through adolescence. Also social, physical, and psychological fields of life quality were found lower in cleft parents compared to control group at adolescence.
The purpose of this study is to better understand the differential impact of specific diagnoses on outcomes in families with children who have physical disabilities and to suggest ways in which clinicians across disciplines can use that knowledge to develop and implement more individualized, evidence-based programs. Descriptive statistics, correlation, and a univariate analysis of variance (ANOVA) were used to analyze data gathered from a sample of 205 parents or guardians of children with physical disabilities. Findings revealed a modest effect of diagnosis type on five family outcomes. These outcomes included: (1) how parents or guardians rated their child's current health compared to 1 year before the study, (2) the degree to which the child's physical health caused worry, (3) the degree to which the child's emotional well-being or behavior caused worry, (4) the degree to which the child's health or behavior limited types of family activities, and (5) the degree to which the child'shealth or behavior interrupted family activities. This article presents an interprofessional model of response.
The evaluation of instruments measuring oral health-related quality of life (OHRQoL) of children has been largely among convenience samples of patients with specific diseases or disorders such as cleft lip/cleft palate or malocclusion.
This study aimed to evaluate the consistency and validity of the recently developed Child Perception Questionnaires (CPQ(8-10) and CPQ(11-14)) and the corresponding Parental Perception Questionnaire (PPQ) in a general child population sample in South Australia.
The study was nested in the Child Oral Health Study. Some 1401 children aged 8 to 13 in 2002/03 were approached. Children were asked to complete the CPQ(8-10) and CPQ(11-14) according to their age while parents completed the PPQ. The questionnaires included global ratings of oral health and overall well-being. Scores for four domains (oral symptoms, functional limitations, emotional well-being and social well-being) were calculated. Data on caries experience (number of decayed, missing and filled tooth surfaces) and occlusal traits (using Dental Aesthetic Index) were collected for each child.
The CPQs and PPQ showed acceptable internal consistency and construct validity against global ratings of oral health and overall well-being. Children who had more caries or less acceptable occlusal traits reported poorer OHRQoL establishing the discriminant validity of the instruments. Parents of the children reported similar child OHRQoL.
These results suggest that the instruments have consistency and validity in measuring OHRQoL of children in a general population.
In a geographically defined child population aged 0-15, every twelfth child suffered from chronic illness. Their parents and randomly selected control children's parents were asked about their living conditions using questionnaires. Non-responders (30%) had the same sociodemographic profile as responders. The socioeconomic level in index families (n = 95) was lower than in control families (n = 166). Both parents worked fewer hours in index than in control families. Index mothers had more health problems and sick days than control mothers. The parents' social relations were most hampered by having children with allergic disorders or mental retardation. Despite reduced hours, more absence from work to care for sick children, and reduced leisure activities, two thirds of the parents of moderately/severely disabled children found it difficult to cater adequately to the needs of their child. A family approach is recommended to provide comprehensive care of children with chronic illness, in which both specialized and primary care are needed.
Despite increased interest in the wellbeing of families with children with chronic conditions and disabilities, instruments to assess family impact of health conditions are still lacking in German speaking countries. The Impact on Family Scale has been developed in the Anglo-american literature as a self report instrument to assess the consequences of chronic conditions and disability in childhood and adolescence for the family. The present paper describes the translation and psychometric testing of a German version of the Impact on Family scale (Familien-Belastungs[FaBel]-Questionnaire). The questionnaire contains 33 Likert-scaled items to assess the general negative impact of parents, the description of social relationships, the concern for siblings, the financial impact and problems in coping as well as a total score. The FaBel questionnaire was used and tested for psychometric criteria of reliability and validity in a cross-sectional study of 273 families with children with chronic conditions and disabilities. The results of this psychometric testing of the FaBel-Questionnaire show acceptance by responders, acceptable construct validity, good internal consistency and discriminant validity. The psychometric structure of the questionnaire corresponds with psychometric results with another German population of children with chronic conditions. The results suggest the applicability of the instrument to assess family impact of chronic disease and disability in children and adolescents.
Background:
Treatment for patients with diverse craniofacial conditions is complex and long-term. Craniofacial conditions profoundly influence health-related quality of life, and patient- and parent-reported outcomes provide a critical and complementary perspective on the multidisciplinary treatment of patients. However, little is known regarding the health-related quality of life among children with diverse craniofacial conditions. The purpose of this study was to systematically review the literature regarding patient- and parent-reported outcomes measures for patients with diverse craniofacial conditions.
Methods:
Articles from the PubMed, PsychINFO, CINAHL, Embase/MEDLINE, Scopus, and Web of Science databases that used patient- and/or parent-reported outcome instruments in patients with diverse craniofacial conditions were reviewed. Diagnoses included were cleft lip and/or palate, craniosynostosis, microtia, craniofacial microsomia, facial vascular malformations, and congenital nevi across pediatric populations (0 to 22 years of age).
Results:
Six hundred ninety articles were identified, and 155 were selected for inclusion. One hundred twenty different health-related quality-of-life tools were used to analyze factors such as physical, psychological, or social function. Of these, the 10 most common psychometrically tested tools were identified in 59 studies. Five tools had both parent and patient versions. Two tools were developed and validated for patients with diverse craniofacial conditions, but neither was developed for nonadolescent children.
Conclusions:
Many parent- and patient-reported instruments are used to measure varying health-related quality of life factors in this population, but no tool exists that was developed and psychometrically tested in different facial deformities that measures comprehensive health-related quality of life issues across all pediatric ages. This study will guide the development of new tools to measure the parent and patient health-related quality-of-life perspective in patients with diverse craniofacial conditions.
This study aimed to assess the impact of nonsyndromic oral cleft (NSOC) on families' quality of life (QoL) using the Brazilian version of the Family Impact Scale (B-FIS). A hospital-based case-control study was conducted with NSOC cases and unaffected controls recruited at Dental Clinic in Federal University. The mean B-FIS scores were 10.32 (SD 6.53) and 5.04 (SD 4.73), while the median scores were 9.00 and 3.50 (p < .05 Wilcoxon test), respectively, in case and control group. The "parental/family activity" subscale had the highest impact average score in case (5.62 SD 3.76) and control group (3.00 SD 3.08) (p < .05 Mann-Whitney test). The types of cleft with the most impact were cleft lip (12.00 SD 8.98) and cleft lip with cleft palate (11.06 SD 6.74). NSOC affects the QoL of families with children who have this condition; however, there were no remarkable differences between the groups.
The aim of this study was to investigate the prevalence of orofacial clefts (OC) in live newborns from 2001 to 2007 in Western Slovakia and correlate their occurrence with a number of relevant seasonal and geographical factors and epidemiological trend of this condition. In this study we used retrospective active survey collecting clinical data of 220 children with OC registered and operated at the cleft centre in Bratislava. Our study group included 67 patients from Bratislava region and 151 patients from the remaining Western Slovakia (Nitra, Trnava, Trenčín regions). Data of live births was obtained from Health Statistics of the Slovak Republic.
Total incidence (TI) of 1.49/1000 live births (LB) in the region of Western Slovakia in 2001-2007 marked a decrease of prevalence compared to 1.64/1000 LB in the years 1985-2000. Bratislava region dominated in total prevalence of 1.82/1000 LB compared to the rest of Western Slovakia regions with 1.37/1000 LB. Most observed cleft type was the CP with 38.6 % frequency, followed by CLP with 35.5 % and CL with a frequency of 24.1 %. The frequency of AM with 1.82 % was the lowest.
The results showed that the frequency risk rate of a birth of a child with OC was 1 to 671 LB in Western Slovakia. The data proved a higher prevalence of OC in Bratislava region with 1 child with this type of congenital anomaly to 549 LB compared with 1 child with OC to 730 LB in the rest of the Western Slovakia regions (Tab. 7, Ref. 16).
Orofacial clefts are common birth defects that may impose a large burden on the health, quality of life, and socioeconomic well-being of affected individuals and families. They also result in significant healthcare use and costs. Understanding the impact of orofacial clefts on these outcomes is important for identifying unmet needs and developing public policies to reduce the burden of orofacial clefts at the individual, family and societal levels. This paper reviews and summarizes the main findings of recent studies that have evaluated the impact of orofacial clefts on these outcomes, with a focus on quality of life, socioeconomic outcomes, long-term health, and healthcare use and costs. Several studies identify an increased burden of orofacial clefts on these outcomes, but some of the findings are inconsistent. A summary of the primary limitations of the studies in this area is presented, along with recommendations and directions for future research.
While descriptions of the effects of chronic childhood illness on the family appear in the literature, there have been few attempts to develop a formal measure of this impact. As part of a longitudinal study of chronic illness in childhood, the development of a measure was undertaken. The conceptual framework and methodology employed in scale development are described. A 24-item scale is presented which elicits variability in response and which is internally consistent. A factor analysis reveals that 4 dimensions of impact are contained in the measure: Financial, Social/Familial, Personal Strain, and Mastery. Psychometric data were derived from administration of the instrument to 100 mothers of chronically ill children. The potential usefulness of the scale in health research is discussed.
Most parents are emotionally traumatized when confronted by the birth of a baby with an orofacial cleft (OFC). Affected families may have to compensate for increased financial, social and personal impacts before primary treatment is completed. This study was conducted to identify factors influencing the quality of life (QoL) of families having young children with OFC. A self-administered questionnaire containing the impact on family scale was applied in 130 consecutive families having children with OFC aged between 6 and 24 months. The results were related to the type of cleft and the time of initial diagnosis using non-parametric tests and multivariate correlation analysis (P<0.05). In families having children with isolated cleft lip, financial and social impacts were reduced, but problems in coping were increased when compared to families with children having cleft lip and palate or isolated cleft palate. Total impact was highest in families having children with isolated cleft palate, probably due to later surgery for reconstruction. Prenatal diagnosis of OFC did not reduce the general impact on affected families, but increased the social impact. The relation of certain impacts to distinct types of cleft might allow more tailored support of affected families and improve their QoL.
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