Psychometric properties of the Turkish version of the Stress Scale for Nurses Providing End-of-Life Care for Children
child; Terminal Care; terminal care; article; controlled study; human; Psychometrics; content validity; construct validity; reliability; nurse; wellbeing; intervention study; checklist; pediatric nurse; Turkey (republic); physiological stress; confirmatory factor analysis; Cronbach alpha coefficient; internal consistency
OBJECTIVES: This study was carried out to evaluate the validity and reliability of the Stress Scale for Pediatric Nurses Performing End-of-Life Care for Children in Turkey. METHOD(S): This was a methodological study conducted with 222 pediatric nurses. Data were collected using the information form for pediatric nurses and the "stress scale for nurses performing end-of-life care for children." Content and construct validity, item analysis, confirmatory factor analysis and internal consistency were used to evaluate the data. The Global Pharmaceutical Regulatory Affairs Summit checklist was followed in this study. RESULT(S): The content validity index of the scale was 0.93. Item-total score correlation values ranged from 0.594 to 0.885. The 5-factor structure of the scale was confirmed as a result of confirmatory factor analysis. Factor loads were greater than 0.30, and fit indices were greater than 0.80. The Cronbach's alpha coefficient of the Turkish version of the scale was 0.97. SIGNIFICANCE OF RESULTS: The stress scale for nurses performing end-of-life care for children is a valid and reliable measurement tool for the Turkish sample. This scale facilitates the assessment of the stress levels of pediatric nurses who provide end-of-life care to children. Also, this scale can be used in interventional studies to improve the well-being of pediatric nurses.
Ayran G; Cevik Ozdemir HN
Palliative and Supportive Care
2023
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/S147895152200181X" target="_blank" rel="noreferrer noopener">10.1017/S147895152200181X</a>
Gait, Balance, and Coordination Impairments in Niemann Pick Disease, Type C1
adolescent; retrospective study; priority journal; scoring system; school child; outcome assessment; preschool child; intervention study; human; article; child; female; male; adult; clinical article; young adult; comparative study; body equilibrium; stabilography; performance; neurologic examination; balance impairment; coordination disorder; gait disorder; Niemann Pick disease; 2 hydroxypropyl beta cyclodextrin; 94035-02-6 (2 hydroxypropyl beta cyclodextrin); case control study; clinical evaluation; disease severity assessment; human development; molecular stability; motion analysis system; NIH NPC Neurologic Severity Scale; research; spatiotemporal analysis; upper limb; vts 270; tone and motor problems; NPC; trajectory; characteristics
This is the first study to objectively measure gait, balance, and upper limb coordination in a group of patients with NPC1 and compare the results to age and gender matched controls. This is also the first study to report effect sizes in these measures. Spatiotemporal gait analysis, static and dynamic posturography, and upper limb reaching motion analysis were performed. The findings showed that the NPC1 subjects had statistically significant deficits on 12 out of the 16 parameters investigated compared to controls, and large effect sizes for all but 1 parameter. When ranking the variables in terms of the effect sizes, the top 5 included at least 1 parameter from each of the 3 motor domains investigated. These results can provide insight to clinical researchers on the selection of outcome measures for longitudinal and interventional studies.
Sansare A; Zampieri C; Alter K; Stanley C; Farhat N; Keener L A; Porter F
Journal of Child Neurology
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/10.1177/0883073817741054" target="_blank" rel="noreferrer noopener">10.1177/0883073817741054</a>
Barriers to research with children and young people with life-limiting conditions and their families: A survey of chief investigators' views, experiences and proposed solutions
human; child; female; male; major clinical study; conference abstract; patient referral; scientist; funding; intervention study; thinking; clinical research; embedding; publication; visibility
Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and clinician gatekeeping, that delay research or result in studies not recruiting to target. This study aimed to provide more in-depth insight on the views, experiences and solutions of Chief Investigators (CIs) recruiting CYP with LLC and LTI and their families in the UK. Methods: We developed an online survey based on a scoping review of the literature and previous rapid survey. The new survey contained closed and open-ended questions and was divided into 3 sections: (1) the CI's most recent project; (2) the CI's overall experience of research with this population; (3) demographic information. Participants were 61 CIs conducting studies with CYP with LLC and LTI and families, identified from the UK NIHR Clinical Research Network Portfolio. Results: Chief investigators reported funding (51%) to be the biggest barrier to research with this population, followed by institutional factors (e.g. research and development approval) (11%) and clinician factors (e.g. gatekeeping) (9%). CIs suggested several generic solutions (e.g. having a well thought out question and methodology to improve chances of obtaining funding). Solutions that were particularly relevant included embedding researchers in clinical teams, involving CYP and families early on in the research process, meeting the specific needs of CYP and families and designing clear and age appropriate written information for CYP. Given the usually low number of eligible CYP, inclusion criteria should be broad and investigators should be aware of the complexity of approvals required for multi-centre studies. Researchers should invest in developing good relationships with clinicians to reduce gatekeeping and attempt to interest them in studies other than intervention trials, which are quite common in this population. Conclusions: The involvement of clinicians, CYP and families at the inception of studies should be considered a priority for research with CYP with LLC and LTI and families. Other potential strategies include increasing the visibility of research, embedding researchers in clinical teams, having clinician research champions, and acknowledging in peerreviewed manuscripts those clinicians who do recruit to studies.
Peake J; Beecham E; Oostendorp L; Hudson B; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
Palliative Medicine
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/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>