Family Members as Caregivers of Individuals with Intellectual Disabilities: Caregiving for Individuals with Intellectual Disabilities

Family Members as Caregivers of Individuals with Intellectual Disabilities: Caregiving for Individuals with Intellectual Disabilities

Krishna Shailesh Vora (Jamnabai Narsee School, India)
DOI: 10.4018/978-1-5225-0089-6.ch007
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Abstract

Whenever you have an individual suffering from any disorder, whether emotional, behavioural or intellectual; the prime focus is almost always the individual experiencing it first hand. Often we tend to neglect the sacrifices or adjustments made by the family members. Caregiver stress is one of the phenomena explored here along with experiences of individual family members and the resources available to make it easier for them. Resources could be in terms of finances, emotional support, personality strengths or the society they live in. Another unlikely term explored over here is that of Caregiver Gain which is recently being given attention due to it. This chapter explores the unique experiences of parents, siblings, grandparents as well as support staff as caregivers of individuals with Intellectual Disabilites. We also have a look at traits that help cope with the caregiving process.
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Caregivers

A caregiver is any person who takes on the responsibility of assisting someone with a mental, emotional or physical disability. Their services can be paid or unpaid. In case when it’s paid, it is usually a nurse or a social worker. Unpaid services are usually given by family members, close relatives’ or neighbours if they have grown up together (Feinberg et al, 2001).

Typical duty of a caregiver in this case would be managing medicines, taking over additional household responsibilities, talking to doctors, psychologists and other parties involved to ensure best treatment and adjustment. Depending on the severity of Intellectual Disability a caregiver may even have to help take care of basic necessities such as hygiene, dressing up, presentation, etc. Additional concerns would be getting the person with Intellectual Disability to become as independent as possible along with a means to occupy him/her with any vocational activity. While caregiving can be a humbling and enriching experience, it can often lead to fatigue, exhaustion and burn out. There has been increasing research on the experiences of caregivers and what can be done to ease their burden. It is also difficult to care while simultaneously feeling worry, anxiety about the care, wanting to help but missing out on leisure time, feeling guilty for wishing things to be different, etc.

Though the research is this field is limited, we are going to try and focus here on experiences of caregivers.

Key Terms in this Chapter

Caregiver: A caregiver is any person who takes on the responsibility of assisting someone with a mental, emotional or physical disability.

Stigma: Stigma is a negative label attached to a person who is different from others. Negative attitudes may also lead to discrimination and negative behaviour towards the individual who is stigmatised.

Caregiver Stress: Stress, fatigues, exhaustion and other negative experiences as a result of caring for someone with mental, emotional or a physical disability is called caregiver stress.

Expressed Emotion: Expressed emotion is hostile, critical and overinvolved emotional attitude of a family member while caring for another family member who has a disorder.

Caregiver Gain: High tolerance, compassion, sense of fulfilment and satisfaction and other positive experiences as a result of caring for someone with mental, emotional or a physical disability is called caregiver gain.

Problem Solving: Problem solving is the ability to be able to deal with problem in an effective manner.

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