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1.
J Pediatr Nurs ; 68: e36-e42, 2023.
Article in English | MEDLINE | ID: mdl-36372698

ABSTRACT

PURPOSE: The aim of this study was to translate the patient reported experience measure (PREM) questionnaire"What do you think of the hospital? Help us to get better!" into Danish used in outpatient clinics and to explore its face and content validity. DESIGN AND METHODS: The translation process followed WHO recommendations and included forward translation, expert panel evaluation, back translation, pre-testing and cognitive interviews with 23 children and adolescents. RESULTS: Children and adolescents were positive to using PREM as a way to express their experiences. The layout of the questionnaire was important as use of colours was more appealing and the topics of the questionnaire were better visualised. The concepts in the original questionnaire related to distinguishing between different rooms for examination and conversation are not used in a Danish context. Otherwise, only minor translation adjustments were needed to match the Danish target group. CONCLUSION: Children and adolescents found that the Danish version of the PREM questionnaire tool was easy to read and understand, and the layout emphasised that they are the target group. After pre-testing among 23 children and adolescents, the questionnaire is now ready for pilottest in a larger group. PRACTICE IMPLICATIONS: The present study provides a tool to generate knowledge and evaluate the experiences of children and adolescents in an outpatient clinic. Using the questionnaire, healthcare staff may monitor the quality of the experiences of children and adolescents and collect data for research purposes. Likewise, it will be possible to compare hospitals and organizations nationally.


Subject(s)
Hospitals , Outpatients , Humans , Child , Adolescent , Surveys and Questionnaires , Patient Reported Outcome Measures , Denmark , Reproducibility of Results , Psychometrics
2.
Acta Paediatr ; 111(10): 2017-2024, 2022 10.
Article in English | MEDLINE | ID: mdl-35748537

ABSTRACT

AIM: Newborn screening represents a paradigm shift in the treatment of children with cystic fibrosis. This study aimed to explore parents' everyday life experiences from the time of diagnosis and in the following months. METHODS: Narrative interviews were conducted at Aarhus University Hospital, Denmark, with parents (mothers = 15 and fathers =14) of 15 term-born children with a mean age of 2 weeks (range 1-3.5 weeks). Participant observation and field notes were used to complement interview data. The analysis was inspired by Kvale and Brinkmann. RESULTS: Three themes were identified. First, on diagnosis, a profound difference in parents' experience was observed depending on whether the diagnosis was communicated by a medical doctor from the cystic fibrosis team or by a paediatrician from another hospital. Second, during the initial meetings and subsequent relationships with the cystic fibrosis team, the knowledge and calmness exhibited by the doctors and nurses were very valuable. Third, regarding everyday life after the diagnosis, most parents described experiencing anxiety and concern for their child's future. CONCLUSION: The parents' experiences highlighted essential elements that should be implemented to optimise the patient care pathway as they are fundamental to parents' ability to cope with the new living conditions.


Subject(s)
Cystic Fibrosis , Adaptation, Psychological , Child , Cystic Fibrosis/diagnosis , Female , Humans , Infant, Newborn , Mothers , Neonatal Screening , Parents
3.
J Pediatr Nurs ; 41: e16-e22, 2018.
Article in English | MEDLINE | ID: mdl-29454507

ABSTRACT

PURPOSE: Pediatric early warning score (PEWS) systems are used to monitor pediatric patients' vital signs and facilitate the treatment of patients at risk of deteriorating. The aim of this study was to gain knowledge about nurses' experiences with PEWS and to highlight factors facilitating and impeding the use of PEWS tools in clinical practice. DESIGN AND METHODS: An exploratory qualitative design was chosen using focus group interviews to gain a deeper understanding of nurses' experiences with PEWS. A total of five focus group interviews were conducted at three hospitals, and a qualitative meaning condensation analysis as described by Kvale and Brinkmann was performed. RESULTS: Seven themes were identified, including i) lack of interdisciplinary awareness, ii) clinical judgment and PEWS-a multi-faceted approach, iii) PEWS supports a professional language, iv) monitoring the patient's - a challenge, v) PEWS helps to visualize the need for escalating care, vi) an inflexible and challenging tool, and vii) supportive tools enhance the nurses' experiences of PEWS positively. CONCLUSIONS: Our findings suggest that attention should be given to nurses' perceptions of how both clinical judgment and PEWS should be seen as essential in providing nurses with information about the patients' conditions. If not, the risk of failing to recognize patients' deteriorating conditions will remain as this can have an impeding influence on nurses' use of PEWS. From the nurses' perspective, medical doctors seemed unaware of their role in using PEWS.

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