Karin Zimmermann1,2, Eva Cignacco1,3, Katri Eskola1, Sandra Engberg4, Anne-Sylvie Ramelet5, Nicolas Von der Weid6, Eva Bergstraesser7. 1. Institute of Nursing Science, University of Basel, Switzerland. 2. Department of Paediatrics, Inselspital Bern University Hospital, Switzerland. 3. University of Applied Sciences Bern, Health Division, Switzerland. 4. School of Nursing, University of Pittsburgh, Pennsylvania, USA. 5. Institute of Higher Education and Research in Healthcare, University of Lausanne, Switzerland. 6. Department of Paediatric Hematology-Oncology, University Children's Hospital UKBB, Basel, Switzerland. 7. University Children's Hospital Zurich, Switzerland.
Abstract
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.
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.
Authors: Andrew Papworth; Julia Hackett; Bryony Beresford; Fliss Murtagh; Helen Weatherly; Sebastian Hinde; Andre Bedendo; Gabriella Walker; Jane Noyes; Sam Oddie; Chakrapani Vasudevan; Richard Feltbower; Bob Phillips; Richard Hain; Gayathri Subramanian; Andrew Haynes; Lorna K Fraser Journal: NIHR Open Res Date: 2022-05-13
Authors: Karin Zimmermann; Katrin Marfurt-Russenberger; Eva Cignacco; Eva Bergstraesser Journal: BMC Palliat Care Date: 2022-05-04 Impact factor: 3.113
Authors: Catriona R Mayland; Katy A Sunderland; Matthew Cooper; Paul Taylor; Philip A Powell; Lucy Zeigler; Vicki Cox; Constance Gilman; Nicola Turner; Kate Flemming; Lorna K Fraser Journal: Palliat Med Date: 2022-08-01 Impact factor: 5.713
Authors: Karin Zimmermann; Eva Bergstraesser; Sandra Engberg; Anne-Sylvie Ramelet; Katrin Marfurt-Russenberger; Nicolas Von der Weid; Chantal Grandjean; Patricia Fahrni-Nater; Eva Cignacco Journal: BMC Palliat Care Date: 2016-03-09 Impact factor: 3.234