Chronic Illness and the Family Meaning System

2017 ◽  
pp. 27-56
Author(s):  
Joan D. Atwood ◽  
Estelle Weinstein
2016 ◽  
Vol 25 (4) ◽  
Author(s):  
Ítala Paris de Souza ◽  
Roseney Bellato ◽  
Laura Filomena Santos de Araújo ◽  
Karla Beatriz Barros de Almeida

ABSTRACT The aim of this study was to understand family organization in care nucleus and supporting networks for families of young patients who experienced childhood kidney disease and adolescent cancer. It is a situational study using the history of life by means of in-depth interviews and observation. A genogram and an eco-map were used as analytical tools for data organization and analysis. The genogram showed family composition and the relationships established among its members and the care nucleus, strengthening the continuing and prolonged care required by the youth. The eco-map contrasted the punctual and unlinked work of the supporting network with the implicated, affective, and continuing work from the base network participation in the illness experienced by the youth. These tools allow health professionals to know the family organization in care, and the resources and networks with which they count on for support through the experience of a chronic illness.


2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
M H N Souza ◽  
T J Santos ◽  
R N Vasconcellos ◽  
M M Costa ◽  
A S Lira ◽  
...  

Abstract Introduction The family life of a child with chronic illness is marked by several determinants and demands for care. Within that context, the greater the support received, the greater the resources available to face vulnerability, and to respond positively to guidance and care. Objectives describing the social network of families of children with chronic illness, and understanding the meaning of the relationship of the family caregiver with the members of his/her social network. Methods Qualitative research with nineteen relatives of children with chronic diseases at a rehabilitation center in the city of Rio de Janeiro, Brazil. The theoretical framework of Sanicola's social network was used. Data were collected in November 2019 by semi-structured interviews and analyzed using the content analysis technique. The research was approved by the Ethics and Research Committee of the participating institutions. The social network map showed the presence of few members and mothers as the main caregivers. The main problems among children were: autism, Down syndrome, cognitive disorders and cerebral palsy. Among the most involved people with the caregivers, friends, sisters and grandparents stood out as the ones who offered material, financial and emotional support. Rehabilitation unit support (secondary level) and dissatisfaction with the primary health unit were mentioned. Conclusions The social network of children with chronic illness is a small family network marked by social vulnerability and the female gender as responsible for care. It is noteworthy that the weakness in the relationship with health professionals at primary care level can compromise care continuity. Therefore, it is recommended to professionals to know the social network of the clientele served, as well as interacting and strengthening this network in order to provide more effective actions for health protection, rehabilitation and supported self-care strategies. Key messages Chronic childhood disease is a major public health problem. Being aware of social network favors the implementation of more actions toward health protection, rehabilitation and supported self-care strategies.


1993 ◽  
Vol 24 (1) ◽  
pp. 34-37
Author(s):  
Rick Houser ◽  
Varda Konstam

Renal transplantation is one of the most common forms of transplantation performed today. The rehabilitation counselor may provide an important role in the rehabilitation of persons that have gone through renal transplantation. For example, the rehabilitation counselor can provide information on the effects of experiencing a chronic illness and provide information on the changes in the family as a result of the chronic illness. However, if the rehabilitation counselor is to be helpful to renal transplant patients they must be knowledgeable about the renal transplantation process. In this article we address the renal transplantation process including: the medical aspects, functional limitations, psychological implications and finally vocational implications as they relate to the rehabilitation counselor.


2006 ◽  
Vol 16 (S3) ◽  
pp. 110-116 ◽  
Author(s):  
Kathleen Mussatto

Chronic illness in a child produces stress for both the child with the illness and the family of which he or she is a part.1 Today, it is estimated that greater than one-tenth of children are living with some form of chronic illness or condition.2–3 Faced with this stress, children and families are required to adapt to potential physical, emotional, social, and financial challenges. Professionals providing health care have an opportunity to influence how children and families interpret and adapt to these challenges. Guidance can be drawn from the multiple theoretical perspectives that have explored the process of adaptation to chronic illness.


2019 ◽  
Vol 8 (4) ◽  
pp. 169-194
Author(s):  
Aparna Nair

Employing an analytical autoethnographic methodology, this paper examines how the polysemic meanings and punctuated character of epilepsy produces social and corporeal vulnerabilities in an Indian childhood. The paper further establishes the importance of the family in influencing individual perceptions and constructions of chronic illness as well as in building resilience or increasing vulnerabilities. In examining the process of research, this paper also makes an argument that disabled researchers in the field can become vulnerable in multivalent ways but also argues that the act of disclosure of epileptic/disabled identities during the research process can become central to building community and resilience. This paper also complicates the often North-centric narrative of disability studies and underlines the importance of social contexts around individual categories of disability or chronic illness.


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