Development and initial validation of the Parental <scp>PELICAN</scp> Questionnaire (Pa<scp>PEQ</scp>u) – an instrument to assess parental experiences and needs during their child's end‐of‐life care

Zimmermann, Karin; Cignacco, Eva; Eskola, Katri; Engberg, Sandra; Ramelet, Anne‐Sylvie; Weid, Nicolas von der; Bergstraesser, Eva

doi:10.1111/jan.12741

Cited by 22 publications

(32 citation statements)

References 24 publications

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“…All selected quotes were translated to English and the accuracy of the translation was verified by the co‐authors. Evidence of initial validity and reliability of the PaPEQu was demonstrated and published elsewhere (Zimmermann et al., ).…”

Section: The Studymentioning

confidence: 88%

“…Quantitative data on parental experiences and needs were obtained through the Parental PELICAN Questionnaire (PaPEQu), which was specifically developed and validated for the PELICAN II main study (Zimmermann et al., ). The questionnaire was structured according to six quality domains of family‐centred EOL care and comprised approximately 90 items.…”

Section: The Studymentioning

confidence: 99%

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Maintaining family life balance while facing a child's imminent death—A mixed methods study

Eskola

Bergstraesser

Zimmermann

et al. 2017

Journal of Advanced Nursing

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Section: The Studymentioning

confidence: 88%

Section: The Studymentioning

confidence: 99%

Maintaining family life balance while facing a child's imminent death—A mixed methods study

Eskola

Bergstraesser

Zimmermann

et al. 2017

Journal of Advanced Nursing

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show abstract

“…), and different types of potential responses or involvement (i.e., calling the police, scolding or reprehending the aggressor, protecting the woman victim, ignoring the situation, doing nothing, etc.). The initial pool of items was then reviewed by a panel of six experts on IPVAW to establish construct representativeness and clarity ( Beck and Gable, 2001 ; Delgado-Rico et al, 2012 ). The experts were asked to rate the representativeness (i.e., whether the item is suitable to measure willingness to intervene in cases of IPVAW), and the clarity (i.e., how concise the item is) of the items on a 7-point Likert-type scale (1 = “Very unrepresentative/unclear”; 7 = “Very representative/clear”).…”

Section: Methodsmentioning

confidence: 99%

The Willingness to Intervene in Cases of Intimate Partner Violence Against Women (WI-IPVAW) Scale: Development and Validation of the Long and Short Versions

et al. 2018

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Willingness to intervene when one becomes aware of a case of intimate partner violence against women (IPVAW) reflects the level of tolerance and acceptance of this type of violence in society. Increasing the likelihood of intervention to help victims of IPVAW is also a target for prevention strategies aiming to increase informal social control of IPVAW. In this study, we present the development and validation of the Willingness to Intervene in Cases of Intimate Partner Violence (WI-IPVAW) scale. We report data for both the long and short versions of the scale. We analyzed the latent structure, the reliability and validity of the WI-IPVAW across four samples (N = 1648). Factor analyses supported a bifactor model with a general non-specific factor expressing willingness to intervene in cases of IPVAW, and three specific factors reflecting different intervention preferences: a preference for setting the law enforcement process in motion (“calling the cops” factor), a preference for personal intervention (“personal involvement” factor), and a preference for non-intervention (“not my business” factor). Configural, metric, and partial scalar invariance across genders were supported. Two short versions of the scale, with nine and six items, respectively, were constructed on the base of quantitative and qualitative criteria. The long and short versions of the WI-IPVAW demonstrated both high reliability and construct validity, as they were strongly related to the acceptability of IPVAW, victim-blaming attitudes, perceived severity of IPVAW, and hostile sexism. These results confirm that both the long and short versions of the WI-IPVAW scale are psychometrically sound instruments to analyze willingness to intervene in cases of IPVAW in different settings and with different research needs (e.g., long versions for clinical and research settings, and short versions for large population surveys). The WI-IPVAW is also useful for assessing prevention policies and public education campaigns design to promote a more responsive social environment in cases of IPVAW, thus contributing to deter and reduce this major social and public health problem.

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“…Because of this, the item count ranged from 91 to 95, with the addition of 13 socio-demographic items. Initial validity and reliability of the PaPEQu has been demonstrated and reported along with a detailed description of its development [20]. In this study only the 34 needs-related items representing the six evidence-based quality domains were used and analysed for gender-specific differences, as well as 7 socio-demographic items.…”

Section: Data Collectionmentioning

confidence: 99%

Differing needs of mothers and fathers during their child’s end-of-life care: secondary analysis of the “Paediatric end-of-life care needs” (PELICAN) study

et al. 2020

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Background: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their child's end of life have not, however, been explored so far. This knowledge is of importance to best meet individual parental needs in paediatric end-of-life care. Methods: Secondary analysis of a quantitative survey on parental needs during their child's last 4 weeks of life, collected in the Swiss multicentre "Paediatric End-of-Life Care Needs" (PELICAN) study. Caregiving needs of mothers and fathers (parental dyad) who had lost a child due to a cardiological, neurological or oncological disease or during the neonatal period in the years 2011-2012 were retrospectively assessed using a questionnaire representing six evidence-based quality domains of paediatric palliative and end-of-life care. Results: Seventy-eight parental dyads were included in this analysis. Differences between mothers and fathers were mostly found around needs to be supported as a family. In all, 28 out of 34 needs-related questionnaire items were scored higher by mothers than by fathers, indicating higher importance for that need to be met. The results indicate that these differences might relate to different caregiving roles and gender-specific coping strategies. Conclusions: To best meet parental needs in paediatric end-of-life care, particular attention should be paid to both mothers and fathers and their specific caregiving roles, as differences in these roles might influence their needs in this exceptional situation. Therefore, healthcare professionals should identify how parental dyads mutually navigate care for their sick child to best meet their needs in support. Additionally, mothers and fathers should be supported in their individual coping strategies.

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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

Abstract: 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.

Cited by 22 publications

References 24 publications

Maintaining family life balance while facing a child's imminent death—A mixed methods study

Maintaining family life balance while facing a child's imminent death—A mixed methods study

The Willingness to Intervene in Cases of Intimate Partner Violence Against Women (WI-IPVAW) Scale: Development and Validation of the Long and Short Versions

Differing needs of mothers and fathers during their child’s end-of-life care: secondary analysis of the “Paediatric end-of-life care needs” (PELICAN) study

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