Development and initial validation of the Parental PELICAN Questionnaire (PaPEQu) - an instrument to assess parental experiences and needs during their child's end-of-life care.

AIM: To develop and test the Parental PELICAN Questionnaire, an instrument to retrospectively assess parental experiences and needs during their child's end-of-life care. BACKGROUND: To offer appropriate care for dying children, healthcare professionals need to understand the illness experience from the family perspective. A questionnaire specific to the end-of-life experiences and needs of parents losing a child is needed to evaluate the perceived quality of paediatric end-of-life care. DESIGN: This is an instrument development study applying mixed methods based on recommendations for questionnaire design and validation. METHOD: The Parental PELICAN Questionnaire was developed in four phases between August 2012-March 2014: phase 1: item generation; phase 2: validity testing; phase 3: translation; phase 4: pilot testing. Psychometric properties were assessed after applying the Parental PELICAN Questionnaire in a sample of 224 bereaved parents in April 2014. Validity testing covered the evidence based on tests of content, internal structure and relations to other variables. RESULTS: The Parental PELICAN Questionnaire consists of approximately 90 items in four slightly different versions accounting for particularities of the four diagnostic groups. The questionnaire's items were structured according to six quality domains described in the literature. Evidence of initial validity and reliability could be demonstrated with the involvement of healthcare professionals and bereaved parents. CONCLUSION: The Parental PELICAN Questionnaire holds promise as a measure to assess parental experiences and needs and is applicable to a broad range of paediatric specialties and settings. Future validation is needed to evaluate its suitability in different cultures.

Pubic growth study: applicability in sexual and age diagnostic.

The growth of five variables of the ischiopubic area was analyzed from bone material from birth to old age. The main purpose was to evaluate its significance and capacity for age and sex determination during and after growth. The material used consisted of 327 specimens from four documented Western European collections. Growth curves were calculated by polynomial regression for two classical variables of the ischiopubic area (pubis length and ischiopubic index) and three new variables of the pubic acetabular area (horizontal and vertical diameter of the pubic acetabular area and the pubic acetabular index). None of the curves showed lineal growth, with the exception of the ischiopubic index and the masculine vertical diameter of the pubis acetabular area. Pubis length has the most complicated growth, expressed by a five-degree polynomial. All the variables are useful for adult sex determination, except the pubic acetabular index. The ischopubic index, vertical diameter of the pubic acetabular area and the pubic acetabular index seem to be good variables for sub-adult sex determination. For age estimation the best variables, in both archaeological and forensic remains, are the absolute measurements (pubic length, vertical and horizontal diameter of the pubis). However, pubis length is the best variable for age estimation because it can be applied until 25 years of age.