Crying by healthcare professionals in the medical setting is a common but understudied phenomenon. We aimed to develop a questionnaire which measures the attitudes of parent towards crying pediatricians and pediatric nurses. We assessed reliability and validity in a group of parents of children who are living with, have died from or survived a life-limiting or life-threatening-condition. The development of the PACPN was based on modification of an existing questionnaire and expert input. In a cross-sectional-design, we assessed reliability and validity for both pediatricians and pediatric nurses. Dimensionality was assessed using principal component analysis (PCA). Cronbach’s alphas were calculated for each subscale. For construct validity, participants were asked to rate an additional question regarding the goal to measure parents’ attitudes towards crying pediatricians/pediatric nurses. We hypothesized that a higher score would have a strong positive correlation with the total score of the PACPN. At the end of the questionnaire, participants were asked to rate and comment the completeness. The developed 25-item questionnaire was completed by 116 parents. The PCA revealed two dimensions: (1) family’s circumstances; (2) personal circumstances of the pediatrician/pediatric nurse. Internal consistency was good (pediatricians,.81–.93; pediatric nurses,.83–.93). The hypothesis regarding construct validity was confirmed (Spearman’s rho =.71–.75). The completeness score was 7.7 (min–max 1–10, SD = 1.51). Conclusion: The PACPN showed good internal consistency and some degree of construct validity. We assume that by adding some items with nuance to the situation and the degree of crying the completeness of the questionnaire will improve. (Table presented.)
Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations of MFS in children are thoroughly addressed in several studies, literature on the impact of MFS on daily functioning is restricted to pediatric advice on sports and leisure participation. Therefore, the full impact of MFS on daily functioning remains unclear. The aim of this qualitative study was to explore parents' perspectives on the impact of MFS on daily functioning of children with MFS aged 4-12 years, themselves and family regarding functional performance, activities, participation, personal and environmental factors, and disease burden. Methods: In this qualitative study parents participated in individual semi-structured interviews (n = 10) and 3 focus groups (n = 5, n = 5 and n = 6). Meetings were transcribed, and data were analyzed using thematic analysis. Meaningful concepts were coded, and concepts concerning children with MFS were linked to the International Classification of Functioning, Disability and Health for Children and Youth. Thereafter themes were identified and interpreted.Results: Parents reported their children could not keep up with peers because of fatigue, pain and physical impairments. Children experienced participation restrictions in school, sports, play and other leisure activities. Parents reported their child as being different due to physical appearance, which provoked unsupportive attitudes. Parental burden was caused by high care needs, lack of support, a limited social life, and concerns about the child's development. Family burden was caused by adjusted and complex family schedules, other family members with MFS, and reproductive planning decision-making, whereas family cohesiveness and caring were positively perceived factors. Conclusions: Parents perceived a large impact of MFS on daily functioning of their children with MFS, themselves and their family. More awareness among all professionals involved in the care of children with MFS and their families is needed so that professionals can address their support needs and provide tailored interventions, rehabilitation and/or educational programs to empower and improve daily functioning of the children, parents and family.
MULTIFILE
Aims To analyze needs and requirements of Pediatric Physical Therapists (PPTs), parents, children and adolescents with and without developmental disabilities in the future use of an activity monitor prototype (AM-p) in everyday clinical practice. Methods Qualitative exploratory study with a thematic analysis approach, based on Braun and Clarke’s six steps. Codes derived from the analysis and central themes were collated, based on Fleuren et al.’s groupings of determinants. Results We interviewed 25 PPTs, 12 parents, and 12 children and adolescents. Within four groupings of determinants, we found nine themes: 1) development of information materials; 2) application: output visualization and ease of use; 3) design; 4) relevance and acceptance; 5) shared decision-making; 6) compatibility in daily living; 7) finances, 8) time, and 9) legislation and regulations. Conclusions End-users have similar basic needs, with individual fine-tuning to be addressed during further development of the AM-p. A child-friendly design, information material, and an easy-to-use application to read and interpret results, need to be developed. Efficient training for PPTs is important for the use of the AM-p and analysis of results. Communication between PPTs and children as well as parents enhances shared decision-making. We recommend involving diverse end-users to enable maximum customization of the AM-p.
