The Neonatal Palliative Care Attitude Scale: Psychometric properties for Portuguese neonatal nurses
End-of-life; neonatal; nursing; newborn; Neonatal; reliability; validity; education; nurse; palliative; Palliative; of; human; article; female; male; face; software; therapy; scale; validation; error; care; attitude; clinical; controlled; intensive; major; study; unit; factor; alpha; analysis; coefficient; confirmatory; consistency; convergent; Cronbach; degree; discriminant; experiment; Factor; freedom; internal; mean; quantitative; root; squared; supportive; terminal; Validation
BACKGROUND: 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. METHOD(S): 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. RESULT(S): 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.
Sousa F P; Roldao MG; Rebotim AM; Figueira AR; Barbosa J; Fradique E; Santos Curado MA
Palliative and Supportive Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/S1478951522000797">10.1017/S1478951522000797</a>
Challenges in receiving research ethics committee approval for studies involving children and young people with life-limiting conditions and life-threatening illnesses: Analysis of research ethics committee minutes and correspondence with principle investigators
documentation; scientist; cytochrome P450; endogenous compound; United Kingdom; conference abstract; human; child; peer review; attention; error; research ethics; writing; 9035-51-2 (cytochrome P450)
Background Research ethics committees (RECs) are identified as one of the biggest barriers to research with vulnerable populations, such as children and young people with life-limiting conditions or life-threatening illnesses (CYP with LLC/LTI). Despite this, REC concerns for research with this population and their correspondence with principle investigators during the research approval process remains unknown. The aim is to explore the challenges in receiving REC approval for studies involving CYP with LLC/LTIs, focusing on the primary concerns of the REC and the ways these are addressed by the research team. Methods Analysis of REC meeting minutes, REC decision letters, and researcher response letters were conducted for all studies involving CYP with LLC/LTIs reviewed in the United Kingdom between March 2011-2016. Results REC meeting minutes and decision letters were received for 77 studies, with 27 researcher response letters provided. Though most REC concerns were general, relating to participant information sheets, methodological issues, or formatting errors, a number of concerns specific to CYP with LLC/LTIs were also identified, such as the age of consent/ assent or the need to involve clinical teams in recruitment. Overall, RECs raised 279 concerns in their correspondence with investigators, most of which resulted in changes to research methods or documentation. Conclusions Research protocols involving CYP with LLC/LTIs usually require multiple changes before REC approval is given. Many of the main REC concerns, such as formatting issues or insufficient detail, can be easily resolved with attention to detail or peer review prior to submission. Others, such as recruitment methods or consent procedures, require more detailed consideration of study methods to ensure they appropriately consider the needs of CYP with LLC/LTIs. Understanding REC concerns may help researchers consider potential issues more thoroughly before submission, reducing the impact of RECs as a barrier and improving research quality overall.
Butler A E; Vincent K; Bluebond-Langner M
Archives of Disease in Childhood
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/goshabs.46" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.46</a>
Family experiences and viewpoints of palliative and supportive care for children with cancer: Can we do better?
oncology; South Africa; grounded theory; basic needs; sibling; conference abstract; financial management; psychosocial care; human; child; female; male; interview; clinical article; awareness; palliative therapy; qualitative research; staff; exploratory research; error
Background/Objectives: Palliative and supportive care needs of children with cancer and their families are unique and require special attention. Development of appropriate services sensitive to the needs of families and based on observed evidence has become more and more recognized. As an introduction to develop and improve supportive and palliative care services for children with cancer, families were questioned regarding their experiences and suggestions for improvements. Design/Methods: In this exploratory, qualitative study using a grounded theory approach, sixteen family members of children with cancer and treated at Universitas Academic Hospital, Bloemfontein, South Africa were interviewed regarding their children's standard oncology and supportive/palliative care. Their responses were studied and repeating themes were identified. Results: A number of areas of need were identified: erratic psychosocial support, minimal financial support, poor parental access to basic needs and food provision, preventable errors in procedures and lack of sibling support. Staff were also not always sufficiently equipped to attend to palliative care patients. Conclusions: Supportive and palliative care for children with cancer need to be improved. Family members are a valuable resource and the interviews identified a number of themes, valuable to consider in the expansion of a supportive/palliative service. The intension of the study were to create the awareness that by making small and affordable changes the quality of care the children and families receive can be improved.
Du Plessis J; Stones D; Meiring M
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>