ANALYZING THE LIVED EXPERIENCES OF PRIMARY CAREGIVERS OF CHILDREN WITH CEREBRAL PALSY ATTENDING THE KORLE-BU TEACHING HOSPITAL IN THE GREATER ACCRA REGION, GHANA

ABSTRACT
Cerebral palsy presents in early childhood as a set of functional limitations that stem from disorders of the developing central nervous system. It is a non-progressive disorder that results from an anoxic brain injury to the foetal or new born brain. Because this disorder can cause disability ranging from mild to severe effects on motor and cognitive functioning, the diagnosis can vary from one child to another, causing family stress due to vague and unknown predicted outcomes of the disorder. The diagnosis of cerebral palsy affects families in different ways depending on coping mechanisms, support systems, and age and level of functioning of the child among other factors, it is therefore important to assess the experiences of their caregivers. This study reports on the lived experiences of primary caregivers of children with cerebral palsy attending the Korle Bu Teaching Hospital in the Greater Accra Region of Ghana. The study utilized a phenomenological approach to look at primary caregivers as the best-informed authority to explore and describe their lived experiences of caring for their child with cerebral palsy. In this qualitative study, forty (40) primary caregivers of children with cerebral palsy were interviewed regarding their experiences before the diagnosis of the condition, during the diagnostic process and post diagnostic experiences. Semi-structured, in-depth, face to face interviews and participant observation were the methods used for data collection. Narratives of 40 participants were transcribed and analysed using thematic coding. The themes and categories that resulted from the content analysis were under three broad fields of experiences namely: Experiences before the diagnosis of the condition, experiences during the diagnosis of the condition and experiences after the diagnosis of the condition. In terms of experiences before the diagnosis, two themes emerged: (1) Confronted with a situation of a child with an abnormality as a new mother, (2) Breaking out of the superstitious beliefs. Regarding experiences during the diagnostic process, three themes emerged: (1) Issues of blame and responsibility (2) Confusion and mistrust with helping professionals (3) mixed feelings about the diagnosis. Four themes emanated from the experiences after the diagnosis of the condition namely: (1) strained family relations (2) Experience of poverty (3) Experience of loss of social life (4) The challenge with finding educational resources and day-care. It is recommended that future research should expand beyond the scope of this work and include caregivers of children with different types of disability.


CHAPTER ONE
INTRODUCTION
1.1 BACKGROUND OF THE STUDY
Good health is a prerequisite for participation in a wide range of activities including education and employment. Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) reinforces the rights of persons with disabilities to attain the highest standard of health care, without discrimination.

A wide range of factors determine health status, including individual factors, living and working conditions, general socioeconomic, cultural and environmental conditions, and access to healthcare services (WHO, 2008). The world disability report (2011) shows that many people with disabilities experience worse socioeconomic outcomes than people living without disabilities; they experience higher rates of poverty, lower employment rates, and have less education. They also have unequal access to health care services and therefore have unmet health care needs compared with the general population. This situation becomes worsened with children with disabilities because they depend on their parents and family totally for care (ibid).

Current systems of care for children with disabilities depend on parents being willing and able to adopt unexpected „informal caregiving careers‟, roles that typically span the course of a child‟s life (Raina et al. 2004). As informal caregivers, parents provide long-term care that often requires extraordinary physical, emotional, social and financial resources. In addition to being responsible for physical care of their child, they must co-ordinate their child‟s numerous and multifaceted medical, education and developmental interventions while balancing competing family needs (Silver et al. 1998).

Parent caregivers of children with disabilities struggle to meet the needs of their entire family by balancing the needs of their child, other family members, and themselves. They may face challenges such as financial burden, sibling rivalry, stigma, self-doubt and blame, marital stress, and difficulty accessing services, in addition to dealing with the symptoms their child is experiencing (Commonwealth Institute, 1999). Family caregivers have been described as stressed, with the potential of having more problems than the persons for whom they care (Lefley, 1997). If parents are not healthy and supported, they may not be able to provide themselves, their child, and the rest of their family with the best possible care.

Cerebral palsy, the most common cause of physical childhood disability, is a non-progressive disorder that results from an anoxic brain injury to the foetal or new born brain (Shelly et al., 2008; Varni et al., 2005). Because this disorder can cause disability, ranging from mild to severe effects on motor and cognitive functioning, the diagnosis can vary from one child to another, causing family stress due to vague and unknown predicted outcomes of the disorder. Because the diagnosis of cerebral palsy affects families in different ways depending on coping mechanisms, support systems, and the age and level of functioning of the child, among other factors, it is important to assess the experiences of their caregivers.

Cerebral palsy presents in early childhood as a set of functional limitations that stem from disorders of the developing central nervous system (Bax, 1964). It is estimated that the worldwide population of cerebral palsy patients has exceeded 15,000,000 (Capute et al, 2008, Winster, 2002). Cerebral Palsy Africa (CPA), a non-governmental organization estimates that 1 per 300 births have cerebral palsy in Ghana. The main feature of cerebral palsy is impaired motor function. In addition, many children with cerebral palsy experience sensory and intellectual impairments, and sometimes have complex limitations in self- care functions such as feeding, dressing, bathing and mobility. These limitations can result in the need for long-term care far exceeding the usual needs of developing children (Breslau, 1982; Blacher, 1984).

Being a developmental disability, Cerebral palsy is likely to continue indefinitely in the life of the growing child. This means that, caregivers of children with cerebral palsy also acquire an informal work with indefinite ending. In effect, cerebral palsy does not only affect the children alone but rather have a daunting impact on their primary caregivers too.

In Ghana, disability is found to be a seriously stigmatizing condition due to the cultural beliefs attached (Tinney, Chiodo, Haig, & Wiredu, 2007; Avoke, 2002). In this regard, disability by birth or in the course of life is usually interpreted as punishment from God or the gods for one‟s wrong doing, that of a family member or by the community (Avoke, 2002; Kassah, 1998). In some cases, people with disabilities are hidden by family members from the wider community (Kassah, 1998). Even in extreme cases, children with disabilities are killed to avoid the shame it brings to the family (Avoke, 2002). Disability is also seen as a result of witchcraft, socery, „juju‟ and magic (Avoke, 1997; Agbenyaga, 2003). Some Ghanaians believe that people with epilepsy are filled with demons that sometimes torment and throw them on the ground, when they so wish (Agbenyaga, 2002), also persons with Down‟s syndrome and Cerebral Palsy in Ghana are believed to be children given by the river god, and hence called „Nsuoba‟, meaning „water children‟ (Avoke, 1997). These beliefs have impact on the lives of those with disabilities as well as their families.

The issue of care for people with severe disability is emotion - laden because of the consequences attached in doing so. Amidst the superstitious interpretations of disability in the Ghanaian culture, primary caregivers of children with cerebral palsy also face the same amount of stigmatization, discrimination and abandonment in the society as their children with disabilities.

For more Public Health Projects Click here
===================================================================
Item Type: Ghanaian Project Material  |  Attribute: 91 pages  |  Chapters: 1-5
Format: MS Word  |  Price: GH50  |  Delivery: Within 30Mins.
===================================================================

Share:

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.

Search for your topic here

See full list of Project Topics under your Department Here!

Featured Post

HOW TO WRITE A RESEARCH HYPOTHESIS

A hypothesis is a description of a pattern in nature or an explanation about some real-world phenomenon that can be tested through observ...

Popular Posts