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.
OBJECTIVE
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.


METHODS
This is an instrument development study applying mixed methods based on recommendations for questionnaire design and validation.


METHODS
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.


CONCLUSIONS
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.
Institute of Nursing Science, University of Basel, Switzerland.|Department of Paediatrics, Inselspital Bern University Hospital, Switzerland.
Karin
K
Zimmermann
Institute of Nursing Science, University of Basel, Switzerland.|University of Applied Sciences Bern, Health Division, Switzerland.
Eva
E
Cignacco
Institute of Nursing Science, University of Basel, Switzerland.
Katri
K
Eskola
School of Nursing, University of Pittsburgh, Pennsylvania, USA.
Sandra
S
Engberg
Institute of Higher Education and Research in Healthcare, University of Lausanne, Switzerland.
Anne-Sylvie
AS
Ramelet
Department of Paediatric Hematology-Oncology, University Children's Hospital UKBB, Basel, Switzerland.
Nicolas
N
Von der Weid
University Children's Hospital Zurich, Switzerland.
Eva
E
Bergstraesser
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010290:Parents / Q000523:psychology*; D010371:Pediatric Nursing / Q000592:standards*; D011594:Psychometrics / Q000295:instrumentation*; D015203:Reproducibility of Results; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D013557:Switzerland; D013727:Terminal Care / Q000523:psychology* / Q000592:standards*
PaPEQu; instrument development; nursing; paediatric end-of-life care; parental perspectives