Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

: Children and young adults (CYAs) with chronic conditions need to engage in self-care to improve their quality of life. This study aimed to retrieve the literature on instruments to assess self-care in CYAs living with chronic conditions and evaluate the psychometric proprieties of the instruments retrieved. A systematic literature review was conducted on six databases to identify peer-reviewed papers that described or used an evaluation instrument of self-care in CYAs with chronic conditions. Twenty-three articles describing 11 instruments of self-care were identified. Five instruments (45.45%) were developed for specific diseases, while six (54.54%) for various chronic illnesses. Most of the instruments were focused on treatment adherence within self-care maintenance (i.e., behaviors to maintain illness stability), excluding the monitoring of clinical parameters or the management of exacerbations. This review provides an overview of available instruments that measure self-care in CYAs with chronic conditions, which health professionals could use for patient education

Self-care in pediatric patients with chronic conditions: A systematic review of theoretical models

Background: To improve outcomes in children and young adults (CYAs) with chronic conditions, it is important to promote self-care through education and support. Aims: (1) to retrieve the literature describing theories or conceptual models of self-care in CYAs with chronic conditions and (2) to develop a comprehensive framework. Methods: A systematic literature search was conducted on nine databases, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. All peer-reviewed papers describing a theory or a conceptual model of self-care in CYAs (0-24 years) with chronic conditions were included. Results: Of 2674 records, 17 met the inclusion criteria. Six papers included a theory or a model of self-care, self-management, or a similar concept. Six papers developed or revised pre-existing models or theories, while five papers did not directly focus on a specific model or a theory. Patients were CYAs, mainly with type 1 diabetes mellitus and asthma. Some relevant findings about self-care in CYAs with neurocognitive impairment and in those living with cancer may have been missed. Conclusions: By aggregating the key elements of the 13 self-care conceptual models identified in the review, we developed a new overarching model emphasizing the shift of self-care agency from family to patients as main actors of their self-management process. The model describes influencing factors, self-care behaviors, and outcomes; the more patients engaged in self-care behaviors, the more the outcomes were favorable

Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining

Objectives: To explore: (1) self-care behaviors in children and young people (range: 6 months–24 years) with complex chronic conditions, characterized by the diagnosis of a severe chronic condition, substantial family-identified needs, functional limitations associated with technology dependence, and intensive use of healthcare services; (2) the contribution to self-care of family members and other persons involved in the child's health and daily life context (e.g., health professionals and teachers), and (3) the principal factors that might have influenced the self-care process associated with developmental age. Methods: A qualitative descriptive study was conducted in an Italian academic tertiary pediatric hospital between September 2020 and May 2021. Overall, 25 focus groups and 7 online interviews were conducted via videoconferencing. Textual data were analyzed using Emotional Text Mining to identify three levels of communication: the factors, the main themes (clusters), and the sub-themes. Results: A total of 104 participants were enrolled, including 27 patients with complex chronic conditions (12 males, mean age = 11.1 ± 4.40), 33 parents, 6 siblings, 33 health professionals, and 5 teachers. Participants described the process of self-care through four main factors: “self-care”, “external settings”, “family”, and “management”. Five clusters (themes) were identified: (1) Self-care management (device; consulting); (2) Shift of agency (influencing factors; parents; school); (3) Self-care support (normal life and personal development; multidisciplinary support); (4) Daily self-care maintenance/monitoring; (5) Treatment adherence. Self-care management was mostly relevant for parents of children aged between 6 months and 3 years. Conclusion: The self-care process varies according to the needs related to the specific developmental age and the evolution of the clinical condition over time. The contribution of the family, health professionals, and social networks is fundamental for adequate self-care. To help families manage the unstable condition of their children at home, it is necessary to strengthen support networks implement home care, and ensure continuity of care

Pediatric nurses in pediatricians' offices: a survey for primary care pediatricians

Background: The role played by nurses in caring for children in pediatricians' officies in the community is crucial to ensure integrated care. In Italy, pediatricians are responsible for the health of children aged 0-14 years living in the community. This study aimed to describe Italian primary care pediatricians' opinions about the usefulness of several nursing activities that pediatric nurses could perform in pediatricians' offices. Methods: An online survey with pediatricians working in primary care in Italy was conducted between April-December 2018. A 40-item questionnaire was used to assess four types of nursing activities: clinical care, healthcare education, disease prevention, and organizational activities. The answers ranged from 1 (not useful at all) to 6 (very useful). Moreover, three open-ended questions completed the questionnaire. Results: Overall, 707 pediatricians completed the online survey. Participants were mainly female (63%), with a mean age of 57.74 (SD = 6.42). The presence of a pediatric nurse within the pediatrician's office was considered very useful, especially for healthcare education (Mean 4.90; SD 1.12) and disease prevention (Mean 4.82; SD 1.11). Multivariate analysis confirmed that pediatricians 'with less working experience', 'having their office in a small town', and 'collaborating with a secretary and other workers in the office' rated the nurse's activities significantly more useful. Conclusions: A pediatric nurse in the pediatrician's office can significantly contribute to many activities for children and their families in the community. These activities include clinical care, healthcare education, disease prevention, and the organizational processes of the office. Synergic professional activity between pediatricians and pediatric nurses could ensure higher health care standards in the primary care setting

The current practice of family-centred care in Italian neonatal intensive care units: A multi-centre descriptive study

© 2018 Elsevier Ltd Objectives: To explore family-centred care practices in Italian neonatal intensive care units and describe areas for improvement. Methods: A cross-sectional, multicentre, survey was conducted using the Italian language version of “Advancing family-centred new-born intensive care: a self-assessment inventory”. The instrument is divided into 10 sections rating the status of family-centred care (1 = not at all, 5 = very well) and ranking the perceived priority for change/improvement (1 = low, 3 = high). A representative group of staff and parent for each unit were invited to complete the survey. Data was collected between January and June 2015. Correlations among unit characteristics and sections within the survey were explored. Settings: All Italian neonatal intensive care units (n = 105) were invited. Results: Forty-six (43.8%) units returned the survey. The “Leadership” section scored highest in status of family-centred care (mean = 3.45; SD 0.78) and scored highest in priority for change (mean = 2.44; SD 0.49). Section “Families as Advisors and Leaders” scored lowest both in status (mean = 1.66; SD 0.67) and in priority for change (mean = 2.09; SD 0.59). The number of discharged infants was positively correlated with many sections in priority for change (r 0.402–0.421; p <.01). Conclusion: This study showed a variability in the organisation of family-centred care practices in Italian neonatal intensive care units and the need to involve parents as partners in the care team. Although family-centred care is considered important by Italian neonatology healthcare professionals, much remains to be done to improve family-centred care practices in neonatal intensive care units in Italy

Perineal discomfort in prostatic adenocarcinoma

We highlight the risk of missing a high-grade\ud (Gleason Grade 7/8) transition zone adenocarcinoma\ud in a patient presenting with perineal discomfort\ud on sitting