An analysis of quality of life in 130 families having small children with cleft lip/palate using the impact on family scale

Kramer, Franz‐Josef; Baethge, Christopher; Sinikovic, Branko; Schliephake, Henning

doi:10.1016/j.ijom.2007.06.009

Cited by 68 publications

(66 citation statements)

References 29 publications

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“…23 The QoL in schoolchildren with OFC was found superior to an age-related control group. Although difficult to explain, potential reasons for this observation might probably include an increased caregiver attention and continuously offered medical care to schoolchildren with OFC.…”

Section: Discussionmentioning

confidence: 88%

Quality of Life in School-Age Children With Orofacial Clefts and Their Families

Kramer¹,

Gruber²,

Fialka³

et al. 2009

Journal of Craniofacial Surgery

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Nonsyndromic orofacial clefts might affect family functioning and probably reduce the quality of life in school-age children and their parents. One hundred seventy consecutive children with orofacial clefts between 8 and 12 years and their families were asked to answer the Impact on Family Scale and KINDL. The results were compared with the quality of life in an age- and sex-matched group of unaffected schoolchildren. One hundred thirty-two families participated in this study. Family functioning was found superior in families with children with cleft lip than in families with children with cleft palate only or cleft lip and palate. Sex had no significant influence on family functioning. The quality of life in schoolchildren with orofacial clefts was found superior to the control group. Reductions were observed in children with cleft lip and palate in the dimensions "family" and "friends," indicating problems in the social field. Boys with orofacial clefts experienced a lower quality of life than girls. Children with cleft lip and palate and cleft palate only experienced a lower quality of life than children with cleft lip. Even years after successful cleft reconstruction, coping and mastering the diagnosis of orofacial cleft is a relevant concern for affected families. Several limitations of the quality of life in schoolchildren were identified, mostly affecting their social role.

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Section: Discussionmentioning

confidence: 88%

Quality of Life in School-Age Children With Orofacial Clefts and Their Families

Kramer¹,

Gruber²,

Fialka³

et al. 2009

Journal of Craniofacial Surgery

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“…Nur in wenigen Studien wurde versucht, die HRQoL von Vorschulkindern oder deren Familien zu untersuchen [18,44]. Es konnte gezeigt werden, dass Jugendliche mit fazialen Abweichungen niedrigere Lebensqualitätswerte haben als Jugendliche, die davon nicht betroffen sind, und ähnliche Werte aufzeigen wie Jugendliche mit chronischen Erkrankungen [39].…”

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“…However, few have attempted to assess the HRQoL in preschool children or their families [18,44]. Adolescents with facial anomalies have been shown to have lower quality of life scores than those not thus affected, in fact, their scores resemble those of patients with other chronic conditions [39].…”

Section: Introduction Einleitungmentioning

confidence: 99%

An Evaluation of Health-Related Quality of Life (HRQoL) in a Group of 4–7 Year-old Children with Cleft Lip and Palate

et al. 2009

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“…Specifically, they perceive their caregiving experience to have individual (e.g., constant worry, physical exhaustion, lack of freedom), familial/ social (e.g., less contact with family and friends, difficulty making plans), and professional/financial (e.g., financial difficulties) consequences, which are seen as burdensome and overwhelming (Baker, Owens, Stern, & Willmot, 2009;Coffey, 2006;Green, 2007;Hunfeld, Tempels, Passchier, Hazebroek, & Tibboel, 1999;Kramer, Baethge, Sinikovic, & Schliephake, 2007).…”

mentioning

confidence: 99%

Parenting an Infant with a Congenital Anomaly: How are Perceived Burden and Perceived Personal Benefits Related to Parenting Stress?

Fonseca

Nazaré

Canavarro

2015

J Clin Psychol Med Settings

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This study aimed to characterize parents' negative (perceived burden) and positive (perceived personal benefits) perceptions about parenting an infant with a congenital anomaly (CA), and to investigate their role in parenting stress. Forty-three couples (43 mothers and 36 fathers) whose 6-month-old infants had a CA completed several questionnaires: the Impact on Family Scale-Revised, the Positive Contributions Scale, and the Parenting Stress Index-Short Form. The results showed similarities between maternal and paternal perceptions. For mothers, higher levels of burden and lower levels of personal benefits were found to predict higher levels of parenting stress. For fathers, greater burden was associated with higher levels of parenting stress. Some dimensions of personal benefits moderated the relationship between burden and parenting stress, for both genders. Specific strategies targeting negative and positive perceptions should be considered when developing psychological interventions to promote the family's adaptation to the experience of parenting an infant with a CA.

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An analysis of quality of life in 130 families having small children with cleft lip/palate using the impact on family scale

Cited by 68 publications

References 29 publications

Quality of Life in School-Age Children With Orofacial Clefts and Their Families

Quality of Life in School-Age Children With Orofacial Clefts and Their Families

An Evaluation of Health-Related Quality of Life (HRQoL) in a Group of 4–7 Year-old Children with Cleft Lip and Palate

Parenting an Infant with a Congenital Anomaly: How are Perceived Burden and Perceived Personal Benefits Related to Parenting Stress?

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