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This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses.
Methods
The research started with a scoping review that allowed the identification of the NiPCAS. It was a methodological study with a quantitative approach. The semantic equivalence of the items was adjusted with the participation of 20 neonatal nurse experts. They performed facial and quantitative content validation. Psychometric validation of the NiPCAS was performed on a nonprobability nurses sample (n = 283) in 13 level 3 neonatal units between July 2021 and February 2022. Confirmatory factor analysis using the polychoric correlation matrix was performed to estimate factor validity using the “lavaan” package for R statistical software. Internal consistency was estimated using Cronbach's alpha coefficient, and item sensitivity was assessed using the asymmetry and kurtosis coefficients. Empirical indices were considered: chi-square over degrees of freedom; comparative fit index; normed fit index; Tucker–Lewis index, and root mean square error of approximation; average extracted variance and composite reliability were used to assess convergent validity.
Results
Asymmetry and kurtosis were <|3| and <|7|, respectively, suggesting psychometric sensitivity. The convergent validity of the factors was: F1, FCF1 = 0.90 and for F2, FCF2 = 0.80, and a lower value for F3, FCF3 = 0.40. According to the squared correlation criterion average variance extracted (AVE) between the factors, there was no discriminant validity for F1 and F2, but there was discriminant validity for F1, F3, F2, and F3.
Significance of results
This instrument has implications for providing end-of-life care to newborns and their families. The use of this instrument reveals several barriers and facilitating elements inherent in the organization and culture of the facility and nursing education.
The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents.
Method
This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden.
Results
Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future.
Significance of results
This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.
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