Supplement continued from Filial Obligates Chapter 1 Lesson 2 The Reality: Caregiver Burden and Stress Perception
[ Great. (Not great).Â
This research has given a lot to chew on so far and may be giving a picture of what Filial Obligation could look like for you. But let’s wrap up our lesson with background information from another piece of research I dug up.
This time, we take an except from a paper on disabled child care, another form of chronic family caregiving.
I’m going to let you read through it and come to your own conclusions from the shocking finale as we ease towards asking the questions…
– What are our practical and psychological challenges?
– How can we mediate the unobservable burdens we’re feeling?
– What are the personal and cultural expectations that muddy the waters?Â
– Is it worth it?]
Caregiving process and caregiver burden: conceptual models to guide research and practice.
Raina P, O’Donnell M, Schwellnus H, Rosenbaum P, King G, Brehaut J, Russell D, Swinton M, King S, Wong M, Walter SD, Wood E.
BMC Pediatr. 2004 Jan 14;4:1.
For each individual there may exist a number of psychosocial mechanisms that regulate the impact of stress on health and well-being. The characteristics of the caregiver, the recipient of care, their shared history, and the social, economic and cultural contexts within which they find themselves combine to create an infinite variety of circumstances from which stress may both originate and be managed.
Nonetheless, there are implications arising from the role itself that help to explain some of the common patterns of stress and stress outcomes (e.g., deteriorating self concept, decline in emotional well being) in caregivers.
Individuals typically occupy multiple roles in life, such as family roles and occupational roles. Becoming a caregiver of a child with long-term disability introduces an additional role, and therefore will require some rearrangement of priorities, and redirection of energy[8]. Not only is this likely to produce strain at a personal level, but it is also likely to spur reactions (potentially negative) from various people who are interconnected to a person through his or her roles outside the realm of caregiving.
Thus stress can be understood to arise at the level of provision of care, as well as in other areas of life.
Much of the literature tends to focus on stress related to direct provision of care, however, as Aneshensel et al. (1995) suggest, it is important to recognize stress occurring in the broader social context in order to gain a complete understanding of its scope and effects[8].
Over the past two decades, family units have become smaller and the rate of marriage breakdown has increased[6]. In the same period, with the technological advance in medicine, the survival of children with disabilities has risen[7]. The shift of healthcare to ambulatory and community-based care settings may serve to increase demands on family members, necessitating that they be more active participants in the care of their child. This combination of factors leaves smaller family units shouldering the responsibility for increased caregiving demands, making the task of understanding and providing for the needs of the caregiver more important.
As reported in both the scientific and lay press, those experiencing what has been called the unexpected ‘career’ of ‘caregiver for a child with a disability’ may experience a multifaceted, complex and stressful life situation that can have important consequences if the health care and social service systems cannot recognize these issues and assist such families.
Like an occupational career, the notion of a ‘caregiver career’ connotes a dynamic process, where an individual proceeds through a sequence of stages, necessitating considerable transitions and restructuring of responsibility over time[8].
For a caregiver, these stages include preparation for and acquisition of the caregiver role, enactment of the associated tasks and responsibilities, and eventual disengagement from the role[8]. Many patterns of change also exist within these stages, such as the need for increased assistance with activities of daily living (ADLs).
Becoming an informal caregiver is not typically chosen or planned; people do not often envision being in a caregiver role when they project themselves into the future[8]. Thus, preparation for this role will most often occur once it has already been acquired[8]. In addition, an informal caregiver lacks the rights, privileges, and prerogatives that come along with a formal career status.
This is not usually a career recognized by society as a worthwhile pursuit. The role also differs from occupational careers in that progression along its pathway is driven not by ambition, but rather by the progression of the disorder and the functional dependencies it creates.
Finally, unlike an occupational career choice, the caregiving career cannot be entered into and left at one’s own will.
The relationship between caregiving and health is described generally in terms of stress. Aneshensel et al. defined stressors in the context of caregiving as “the problematic conditions and difficult circumstances experienced by caregivers (i.e. the demands and obstacles that exceed or push to the limit one’s capacity to adapt)”.
Emphasized in this conceptualization is that stress originates at an intersection between one’s external environment and internal state; it arises “when the demands imposed by a patient’s condition collide with a caregiver’s subjective ability to respond, or when these demands obstruct the pursuit of other objectives”[8].
This intersection between the individual and his or her environment serves to explain why some caregivers seem less affected by caregiving stress, while others experience more deleterious health outcomes.
The potential compromise of caregiver health brought on by the demands of the role is poignantly exemplified in a well-publicized Canadian story (known as the Latimer case) where a father had taken the extreme action of killing his child with a disability. The father’s explanation for committing this act emphasized the feelings of stress he experienced related to taking care of his child, the child’s degree of pain, and his sense of helplessness regarding the future life his child would have.
This case caused a considerable amount of controversy between two coalitions: those representing the rights of people with disabilities and those who believe that “mercy killing or assisted suicide” is sometimes justified. The case was finally resolved through the Supreme Court of Canada and resulted in a charge against the father of second degree murder with a 10 year sentence. The court upheld the principle that every individual’s life, with or without a disability, is to be treated equally in society and receive the full protection of the law.
It is interesting to note that this decision did not receive popular support as the majority of people polled felt the decision was wrong, that killing his daughter was excusable based on the consequences of her disability.
This is a strong reflection of the public’s perception that caring for an individual with a disability must be extremely stressful and not necessarily worth the effort.
