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.
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Item Type: Ghanaian Topic | Size: 91 pages | Chapters: 1-5
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