The experience of life after burn injury: a new bodily awareness.

AIM: This paper is a report of a study to describe the injured body of people who have survived a major burn and seeks to understand the essence of their lived experience. BACKGROUND: The burden of a burn-injured body, including loss of function, altered appearance and psychological distress, can threaten return to preburn state of life and successful return to society. METHOD: Fourteen participants (three women and 11 men; mean age 46 years) who had survived a major burn were interviewed in 2005-2006 an average 14 months after injury. A Husserlian phenomenological approach was adopted. FINDINGS: A new and demanding bodily awareness, disclosing both limitations and potentials, emerged as the essence of the burn survivors' experience of their injured bodies. This was supported by a descriptive structure of the body as telling a new story, being unfamiliar to watch and sense, vulnerable and in need of protection, more present with a variety of nuisances, having brakes on and resisting habitual actions, as well as being insecure when distrusting own abilities. Participants typically experienced losing the familiarity of their bodies as anonymous and unconsciously at hand for all possible actions in everyday life. Significant others served as buffers, extensions of participants' injured bodies, reducing obstacles and insecurity in all aspects of life. CONCLUSION: The lived experience of people who have sustained a burn injury should be recognized and valued by nurses in all phases of burn care. Nurses have an important role in facilitating the presence and involvement of family and friends in the recovery and rehabilitation of burn survivors.

Familial risk of oral clefts by morphological type and severity: population based cohort study of first degree relatives.

OBJECTIVE: To estimate the relative risk of recurrence of oral cleft in first degree relatives in relation to cleft morphology. DESIGN: Population based cohort study. SETTING: Data from the medical birth registry of Norway linked with clinical data on virtually all cleft patients treated in Norway over a 35 year period. PARTICIPANTS: 2.1 million children born in Norway between 1967 and 2001, 4138 of whom were treated for an oral cleft. MAIN OUTCOME MEASURE: Relative risk of recurrence of isolated clefts from parent to child and between full siblings, for anatomic subgroups of clefts. RESULTS: Among first degree relatives, the relative risk of recurrence of cleft was 32 (95% confidence interval 24.6 to 40.3) for any cleft lip and 56 (37.2 to 84.8) for cleft palate only (P difference=0.02). The risk of clefts among children of affected mothers and affected fathers was similar. Risks of recurrence were also similar for parent-offspring and sibling-sibling pairs. The "crossover" risk between any cleft lip and cleft palate only was 3.0 (1.3 to 6.7). The severity of the primary case was unrelated to the risk of recurrence. CONCLUSIONS: The stronger family recurrence of cleft palate only suggests a larger genetic component for cleft palate only than for any cleft lip. The weaker risk of crossover between the two types of cleft indicates relatively distinct causes. The similarity of mother-offspring, father-offspring, and sibling-sibling risks is consistent with genetic risk that works chiefly through fetal genes. Anatomical severity does not affect the recurrence risk in first degree relatives, which argues against a multifactorial threshold model of causation.

Prevalence of major anatomic variations in oral clefts.

BACKGROUND: The authors describe morphologic variations of oral clefts in a large population-based sample, especially variations in severity and laterality. The authors present 3616 cleft cases treated in Norway for oral clefts between 1967 and 1998. METHODS: Classification of cleft morphology was based on clefting in 9 anatomical focal areas. A three-digit coding system provides a total of 63 possible cleft combinations. Their distribution in the population is presented as a whole and stratified by the baby's sex and the presence of accompanying malformations. The relative proportion of cleft types is illustrated in modified striped Y Kernahan diagrams. RESULTS: Clefts of the lip or palate are more severe when both cleft types are present. Among babies with cleft lip, 18 percent of lips were severe (i.e., complete cleft of the primary palate) in the absence of cleft palate, compared with 81 percent severe when cleft palate was also present. Similarly, among babies with cleft palate, 40 percent were severe (complete cleft of the secondary palate) in the absence of cleft lip, compared with 93 percent when cleft lip was also present. The more severe the cleft lip, the more likely that the baby had an accompanying cleft palate. Girls were more likely to have severe clefts, as were patients who had other types of congenital disabilities. Although cleft lip was more frequent on the left side, clefts were not more severe on the left side. In bilateral cleft lip, the severity was similar on both sides. CONCLUSION: The authors' data provide a population-based reference for common and rare variants of oral clefts.

Completeness of registration of oral clefts in a medical birth registry: a population-based study.

BACKGROUND: Epidemiological surveillance and research on birth defects require accurate diagnosis and adequate registration. In this regard, the performance of national birth registries is not well described. METHODS: We linked clinical data from all 3,616 cleft cases treated in Norway between 1967 and 1998 with data from the Medical Birth Registry of Norway, and calculated the proportion of clinically verified cases reported to the Registry, stratified by severity. RESULTS: The cleft type most completely ascertained was cleft lip and palate (CLP), of which 94% were reported. Ascertainment was less complete for cleft lip alone (83% recorded), and cleft palate only (CPO) (57% recorded). For each of the three types of clefts, completeness of reporting depended on severity of the cleft. For example, 71% of cases with severe CPO were reported, while only 11% of cases with mild CPO were reported. CONCLUSIONS: Ascertainment was strongly related to cleft type and severity. To the degree that severity of birth defects may be related to their cause, these patterns of registration have implications for surveillance of birth defects as well as the conduct of etiologic studies. The large proportion of cleft palate cases unrecorded at birth suggests that clinical examination of the newborn palate is often inadequate.