Theory of Chronic Sorrow as a Framework for Planning Care and Identifying Resources for a Family with a Child Diagnosed with Cerebral Palsy
Question
Theory of Chronic Sorrow as a Framework for Planning Care and Identifying Resources for a Family with a Child Diagnosed with Cerebral Palsy
Answer
Theory of Chronic Sorrow as a Framework for Planning Care and Identifying Resources for a Family with a Child Diagnosed with Cerebral Palsy
1. Introduction
It is important to identify the situational and emotional factors that contributed to the sorrow as it greatly affected where they moved into the next phase and how long they stayed in it. In this instance, the person may have just experienced an acute episode of multifactorial sorrow but will be seeking a way to alleviate the feelings.
CSS trajectory states that the person affected will move in and out of the 4 phases: shocked disorganization, searching and acceptance, moving between them with changes in situational and emotional factors. During the shocked disorganization phase, a parent may enter this phase when the child is first diagnosed with CP or ataxia. They may feel stunned, confused, or disheartened. A mother who participated in a longitudinal study on parental mental health when a child is diagnosed with cerebral palsy reported her feelings on receiving the diagnosis, saying “I was terribly, terribly upset because I thought that means the end of the world, of everything.” A predictor of chronic sorrow is a disappointment in the condition of the child compared with what was expected, so a parent who has been given a poor prognosis may feel the sorrow regardless of whether it was a realistic diagnosis. In a study conducted with a representative of children with militantly and severely impaired children with CP and their families in Scotland, feelings about CP and the prognosis of the child were very negative. Going on to the death of the child, this may be an example of an event triggering an episode of sorrow. At this phase, families for whom the prognosis is poor may move in and out of the episode of sorrow and into the searching and acceptance phase.
Eakes et al describe sorrow as an appropriate response to loss; however, sadness is only one emotion experienced during the sorrow response. It is classified as chronic when it recurs intermittently and a predictable time or after an event. CSS occurs in a number of situations in which families of children with cerebral palsy or spinocerebellar ataxia may feel sorrow.
CSS is a middle range nursing theory concerned with the long term effects of chronic sorrow on an individual and family. It was developed by Georgene Gaskill Eakes, Mary Lermnann, and Melba Cicierega in reaction to the overwhelming feelings of sadness they were experiencing in their current nursing practice. CSS is described as episodic. During the acute phase, the individual or family may experience intense feelings of sadness or depression, feelings of guilt or anger at the loss experienced, and difficulty accepting the limitations of the child or family member.
This essay will apply the chronic sorrow theory (CSS) to the case of a family with a child with spinocerebellar ataxia and discuss its relevance in terms of planning care and identifying resources. Spinocerebellar ataxia in children presents very similarly to cerebral palsy in that it is a motor disorder.
Theory of Chronic Sorrow as a Framework for Planning Care and Identifying Resources for a Family with a Child Diagnosed with Cerebral Palsy
2. Understanding the Theory of Chronic Sorrow
2.1. Definition and Background
2.2. Key Concepts and Components
2.3. Application to Families with a Child Diagnosed with Cerebral Palsy
3. Planning Care using the Theory of Chronic Sorrow
3.1. Assessing the Family’s Needs and Resources
3.2. Identifying Supportive Services and Programs
3.3. Developing Individualized Care Plans
4. Identifying Resources using the Theory of Chronic Sorrow
4.1. Medical and Therapeutic Resources
4.2. Educational and Developmental Resources
4.3. Financial and Legal Resources
5. Collaboration and Communication
5.1. Building a Collaborative Care Team
5.2. Effective Communication Strategies
5.3. Advocacy and Empowerment
6. Addressing Emotional and Psychological Needs
6.1. Providing Emotional Support and Counseling
6.2. Coping Strategies and Resilience Building
6.3. Balancing Hope and Realism
7. Enhancing Quality of Life
7.1. Promoting Independence and Functional Abilities
7.2. Accessing Recreational and Social Opportunities
7.3. Ensuring Inclusion and Community Integration
8. Continuity of Care and Long-Term Planning
8.1. Transitioning to Adult Care Services
8.2. Future Planning and Guardianship
8.3. End-of-Life Care Considerations