The transition of health care responsibility from parents to youth diagnosed with chronic illness: A developmental systems perspective.

2014 ◽  
Vol 32 (2) ◽  
pp. 219-234 ◽  
Author(s):  
Bonney Reed-Knight ◽  
Ronald L. Blount ◽  
Jordan Gilleland
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Developmental Systems ◽  
Systems Perspective

Post Your Journey: Instagram as a Support Community for People With Fibromyalgia

2018 ◽  
Vol 29 (2) ◽  
pp. 237-247 ◽  
Author(s):  
Ashley A. Berard ◽  
André P. Smith
Keyword(s):  
Health Care ◽  
Social Capital ◽  
Social Media ◽  
Content Analysis ◽  
Chronic Illness ◽  
Health Care Systems ◽  
Virtual Community ◽  
Widespread Pain ◽  
Care Systems ◽  
Media Applications

Fibromyalgia is a chronic illness with primary symptoms of widespread pain and fatigue. Social media applications have become a recent resource allowing individuals with fibromyalgia to interact in a virtual community devoted to the illness. This study explores how such a community develops and maintains itself on Instagram and the ways it creates social capital for its users. Data are derived from Instagram posts and open-ended questionnaires completed by users living with fibromyalgia who use the application. Using content analysis and semiotic methodology, the study analyzes the diverse ways in which users shared their experiences with fibromyalgia, the management of its symptoms, and issues encountered in accessing health care systems. Instagram aids in the development of a community by facilitating intimate and supportive interactions about the illness and the creation of personalized day-to-day narratives accessible to all. Norms of trust, acceptance, and reciprocity characterize the diversity of interactions in this community.

INTRODUCTION

PEDIATRICS ◽  
1993 ◽  
Vol 91 (5) ◽  
pp. ii-ii
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Child Development ◽  
Health Services ◽  
Cultural Sensitivity ◽  
Health Care Professionals ◽  
Research Policy ◽  
The United States ◽  
Policy Formulation ◽  
Full Account

In June 1992, 35 health care professionals, child and disability advocates, researchers, clinicians, and parents met at Wingspread Center in Racine, Wisconsin, for an invitational conference on Culture and Chronic Illness in Childhood. The meeting had as its goal the identification of the state of knowledge on the interface between culture, chronic illness, child development, and family functioning so as to lay the foundations for "culturally appropriate" health policy formulation, "culturally sensitive" services, and "culturally competent" clinicians. The purpose of this special supplement is to establish a national agenda for research, policy, service delivery, and training in addressing the needs of all children with chronic illnesses and disabilities that takes the family, ethnicity, socioeconomic status, and culture into full account. To meet this task, five papers were commissioned. The first, by Newacheck et al, addresses the changes in incidence and prevalence of chronic illness and disability among children and youth by ethnic group. The second paper, by McManus et al, focuses on the trends in health services organization, delivery, and financing as they vary among ethnic groups in the United States. What emerges is a rhetoric of cultural sensitivity not paralleled in the organization or financing of health services. Groce and Zola's paper addresses how cultural attitudes and beliefs are the foundations of our perceptions about health and illness. Those perceptions at times are predisposed to conflict with a health care professional who, coming from a different culture, may hold different norms and beliefs. Brookins grounds her discussion within the context of child development and argues that for a child of color or one whose ethnic heritage is other than mainstream, the key to developmental success is bicultural competence—the ability to walk in and between two worlds.

Age Limits of Pediatrics

PEDIATRICS ◽  
1988 ◽  
Vol 81 (5) ◽  
pp. 736-736
Author(s):  
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Early Adulthood ◽  
Developmental Processes ◽  
Growth Development ◽  
Age Limits ◽  
The Individual ◽  
Special Circumstances

The purview of pediatrics includes the physical and psychosocial growth, development, and health of the individual. This commitment begins prior to birth when conception is apparent and continues throughout infancy, childhood, adolescence, and early adulthood, when the growth and developmental processes are generally completed. The responsibility of pediatrics may therefore begin with the fetus and continue through 21 years of age. There are special circumstances (eg, a chronic illness and/or disability) in which, if mutually agreeable to the pediatrician, the patient, and when appropriate the patient's family, the services of the pediatrician may continue to be the optimal source of health care past the age of 21 years.

The context of health care communication in chronic illness

2004 ◽  
Vol 54 (3) ◽  
pp. 299-306 ◽  
Author(s):  
Sally E. Thorne ◽  
Susan R. Harris ◽  
Karen Mahoney ◽  
Andrea Con ◽  
Liza McGuinness
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Health Care Communication

scholarly journals Parent-child collaboration in health care decision making: perspectives of young people with chronic illness

2021 ◽  
Author(s):  
Elana Jackson
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Chronic Illness ◽  
Young People ◽  
Organ Transplant ◽  
Chronic Illnesses ◽  
Structured Interviews ◽  
Health Care Decision ◽  
Role Of Parents ◽  
Care Decision

This study explores the perspectives of young people with chronic illness on their participation in health care discussions and decision making, with a specific focus on the role of parents in facilitating participation. Semi-structured interviews were conducted with 26 participants between the ages of 5 and 18. Participants were recruited from inpatient units at a pediatric hospital. A range of chronic illnesses were represented among members of the sample, including kidney failure, Crohn’s disease, organ transplant, and sickle cell anemia. Following data collection, a focused analysis was conducted of participants’ statements related to parent involvement in the health care decision making process. Salient themes that emerged from analysis of the data reveal a complex and bidirectional process in which young people and parents negotiate children’s participation in making decisions related to their health care. Based on the findings, a collaborative-contextual model of decision making is proposed.

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