Chronic disease

Objective: to know how the family experiences receiving the diagnosis of chronic disease of the child. Method: this is a descriptive and exploratory study, with a qualitative approach, with 15 family caregivers of children with chronic diseases. The technique used for the production of data was the semistructured interview, using a tape recorder. The responses were transcribed and analyzed according to the Thematic Analysis.

Background and Objectives: Many children with special health care needs (CSHCN) receive health care at home from family members, but the extent of this care is poorly quantified. This study's goals were to create a profile of CSHCN who receive family-provided health care and to quantify the extent of such care.

Background: Few studies have been conducted on the burden of care in caregivers of children with chronic illnesses. This study investigated the burden of care and associated factors in first-degree caregivers of children and adolescents with chronic conditions. Methods: A cross-sectional study was conducted from June to September 2017 on 385 first-degree caregivers of children and adolescents with chronic disorders.

Background: Chronic diseases in childhood can affect the physical and mental health of patients and their families. The literature on pediatric chronic diseases has found important associations between the sociodemographic variables of children and their caregivers and negative health consequences in families.

Background: The resilience to face disease is a process of positive adaptation despite the loss of health. It involves developing vitality and skills to overcome the negative effects of adversity, risks, and vulnerability caused by disease. In Mexico, the Mexican Resilience Measurement Scale (RESI-M) has been validated with a general population and has a five-factor structure. However, this scale does not allow evaluation of resilience in specific subpopulations, such as caregivers.

Objectives: to understand the meanings assigned by family caregivers about children's chronic disease diagnosis

Methods: qualitative study, which used as theoretical framework the Symbolic Interactionism, and methodological, the Grounded Theory. It was held in a pediatric unit in Southern Brazil, in 2016, through interviews submitted to open and axial analysis, with the participation of 20 family caregivers of hospitalized children.

Using a work domain analysis and complementary thematic analysis, this paper aims to describe medication management work, its constraints, and complexities from the perspectives of family caregivers of children with medical complexity-a medically fragile segment of the pediatric population often dependent on multiple and complex medication regimens for survival and optimal functioning.

Objectives: This narrative review aims to provide an introduction and overview of dyadic research within the context of chronic illness. In addition, some methodological considerations and future directions for conducting dyadic research are presented. Methods: The focus of this review is on adult participants in dyads and with chronic illness based on the previous studies and literatures on dyadic science.

Objective: This caregiver case study applies the lens of relational coordination theory (RC) to examine the value of telehealth as a medium of care coordination for a pediatric patient with hypermobile Ehlers-Danlos Syndrome (hEDS) during the COVID-19 pandemic. Background: The COVID-19 pandemic has placed an unprecedented burden on the delivery of healthcare around the globe and has increased the reliance on telehealth services.

Background: Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP.