Parents' process of recognition and response to clinical deterioration of their children with medical complexity at home: A grounded theory.
Autor: | Genna, Catia, Thekkan, Kiara Ros, Geremia, Caterina, Di Furia, Michela, Campana, Andrea, Dall'Oglio, Immacolata, Tiozzo, Emanuela, Gawronski, Orsola |
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Předmět: |
EVALUATION of medical care
PARENT attitudes CLINICAL deterioration POPULATION health management FOCUS groups CHRONIC diseases HOME care services GROUNDED theory FUNCTIONAL status CHRONIC diseases in children MEDICAL personnel MEDICAL care QUALITATIVE research MEDICAL care use COMPARATIVE studies SELF-efficacy QUALITY of life CLINICAL competence RESEARCH funding PARENT-child relationships TECHNOLOGY DATA analysis software |
Zdroj: | Journal of Clinical Nursing (John Wiley & Sons, Inc.); Aug2023, Vol. 32 Issue 15/16, p4677-4693, 17p |
Abstrakt: | Aim: To explore the process of recognition and response to clinical deterioration of children with medical complexity at home by their parents. Background: Children with medical complexity are characterised by known chronic conditions associated with frailty and functional limitations, dependence on healthcare services and high use of technology and resources. Their medical complexity often leads to the onset of complications. Targeted care ensures timely recognition and response to clinical deterioration at home, thus avoiding serious sequelae, inappropriate hospitalisations and improving quality of life. Evidence on parents' process of the recognition and response to clinical deterioration at home is limited. Design: Qualitative study using a Grounded Theory methodology. Method: Seven online focus groups were conducted with parents and healthcare providers experienced in their care. The interviews were transcribed verbatim and analysed through open, axial and selective coding, using a constant comparative iterative method. The COREQ guidelines guided the reporting of this work. Results: Four categories and one core category were identified: (1) Awareness of the unique and shared characteristics of children with medical complexity; (2) Parents' care maintenance and management; (3) Parents' care monitoring; (4) Parents' response to clinical deterioration and (5) Seeking the Shift of Agency, the core category as the foundation of the Process of Recognition and rEsponse of PAREnts to Deterioration (PRE‐PARE‐D) theory. Conclusion: The role of parents of children with medical complexity is evolving into active care leaders, by developing care management and care monitoring competences and negotiating care with healthcare providers. Relevance to clinical practice: The shift of agency from healthcare providers to parents requires education and counselling pathways to promote the development of parent's self‐efficacy, competencies and empowerment in the care management of their children. Home care delivery for children with medical complexity should aim at sustaining this partnership between healthcare providers and parents. [ABSTRACT FROM AUTHOR] |
Databáze: | Complementary Index |
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