The most auspicious moment for parents is when they are blessed with a child. Parents usually have high aspirations and dreams for their children. When they then discover some anomalies with their child at birth, this vision may be suppressed and different emotions may be experienced (Gull and Nizami, 2015:144). Feelings of guilt may arise as one or both parents may feel that they caused the child’s disability through genetics, alcohol misuse or stress (Trollope, 2013:9).
When a child acquires a disability later in life, the adjustment that both the person (the child) and his/her family must make causes certain emotions and experiences. Again, feelings of guilt may arise where one or both parents may feel as though they caused the child’s disability for various reasons (Trollope, 2013:9).
was likely to under-represent childhood disability for various possible reasons such as the fact that the under-five age group was excluded from the census and that there is stigma attached to having a child with a disability.
Kendall and Buys (1998:16) suggest that the adjustment that must be made after an acquired disability is best described as a recurrent process, often characterised by continuous sorrow. The sorrow is likely to re-emerge regularly in a repetitive pattern of despair and acceptance. Their study also found that following a permanent disability, individuals alternated between 'pre-disability' identity and their new 'disability' identity. Although their findings were related to the person with the disability, this response predicts possible outcomes for this current study that focuses on family caregivers of persons with physical disabilities and how they experience the adjustment.
Family members may shift in their own adjustments and abilities to cope with the caregiving demands, thereby affecting the person with a physical disability’s ability to cope. In some situations, family members will adjust by making a conscious choice between the goals of the person with a disability and those of the health-care professional, which may be contradictory. In other cases, family members may be unable to adjust to the changes imposed by the disability and display more distress than the person with the disability. Family members in caregiving roles can have an impact on the psychological and physical adjustments of persons with disabilities (Migerode, Maes, Buysse and Brondeel, 2012:487).
An acquired disability, however, does not always lead to negative experiences only. It can force family members to confront issues of trust, mortality and values, which would require them to develop deeper commitments and even redefine the meaning of marriage or kinship. Some family members have reported a greater sense of intimacy, greater family and personal relationships and positive changes in shared family values (Elliott et al., 2002:687).
In general, it seems that although adjustments must be made by the person with the disability and their family in both congenital and acquired disabilities, there is a difference in experiences between these disabilities. If a child was born with a congenital disability, it might start out as a disappointment for the family and it might mean that they must commit to life-long care for the child. However, they become accustomed to this lifestyle and start to adjust to it. When a person acquires a disability later in life then
both such a person and his/her family should not only adjust to the disability itself, but also refrain from continuously comparing their ‘pre-disability’ lifestyle to the ‘disability’ lifestyle.
2.4.1 Role of family caregivers in caring for persons with physical disabilities
For almost all parents, caring for a child is an experience filled with triumphs and joy as well as challenges and stress. The parenting responsibilities for parents of children with disabilities often require a great deal of time, can be physically demanding, and can disrupt family and social relationships. Such responsibilities can also negatively affect caregiver employment (Resch, Mireles, Benz, Grenwelge, Peterson and Zhang, 2010:139). All these aspects are discussed later in this chapter.
Simplican, Leader, Kosciulek and Leahy (2015:27) found that most people with intellectual and developmental disabilities, which could include physical disabilities, live with their families. As informal caregivers, family caregivers provide long-term care which often requires exceptional physical, emotional, social and financial resources. Not only are they usually responsible for the physical care of their child, they must also coordinate their child’s numerous and multifaceted medical, education and developmental interventions while still balancing family needs of other family members (Murphy, Christian, Caplin & Young, 2007:184). Examples of these interventions or support include the following: helping their dependent family members with daily tasks, making appointments, managing finances and medication, organising socialisation and recreational activities, and supervising and assisting their family member with bathing, meal preparation, and feeding (Broodryk, 2014:6-7).
Parents (or other family caregivers) play an important role in providing social and emotional support for children and adolescents, especially for children with a physical disability. This is due to the shift of rehabilitation services from being institutionalised to being provided at home. The role of parental support is very complex and has produced varying results in research. Some studies suggest that persons with physical disabilities experience a sense of overprotection by their parents whilst others report
the relationship with parents as being supportive and important to their success (Antle, Mills, Steele, Kalnins and Rossen, 2008:191).
Children with disabilities depend greatly on the willingness and ability of their parents to adopt unexpected ‘informal caregiving careers’, roles that typically span the course of a child’s life (including adulthood). Parents tend to worry about the importance of daily routines that will promote their child’s well-being (Antle et al., 2008:191). Moreover, they must balance these needs of the child with the general needs of other family members (Murphy et al., 2007:184).
Cohen and Napolitano (2007:149) claim that a family’s response to disability has a powerful influence on the individual. They refer to the actor, Christopher Reeve, who was thrown from a horse, after which he was paralysed. He noted the importance of family support during his rehabilitation.
A study by Antle et al. (2008:191) found that besides providing normal daily support, parents also make a great effort to help facilitate the participation of their adolescent with a physical disability in developing friendships.