Challenges Affecting Family Caregivers
Caregiving in our society affects individuals of all races, lifestyles, and incomes. As our population ages, a growing number of American adults will serve as caregivers for loved ones who are disabled and/or living with a chronic condition.
Understanding what factors affect the family caregivers in their attempt to provide quality care in the home is extremely important. The responsibilities are very diverse and may range from simple tasks such as dishwashing and cooking to more complex tasks such as managing a disease process by providing medications and/or treatments to the care recipient.
Today in the United States there are a significant number of individuals who are providing care to their loved ones. Informal caregivers are providing care to individuals with complex healthcare needs; Informal caregivers must now learn how to become competent safe volunteer workers who can better protect their loved ones from harm all while managing their new role. Family caregivers may feel emotionally strained and fatigued since caregiving can take an emotional toll.
Little is known about what affects the informal family caregiver’s attitudes, perceptions, and behaviors when they provide care in the home. A qualitative study was done in order to examine the caregiving experience. Several categories emerged during the research process such as changing of roles, learned resourcefulness, perseverance, and constant vigilance. The core category that emerged from the study findings was caregiving being a moral responsibility.
Changing Roles
Caregiving is not a task-oriented role; it is a very dynamic role filled with complexities and stressors. Caregivers experience a dramatic change in their lives and must now acclimate themselves to their new role as a caregiver. The subcategory that emerged from the concept of changing roles was the caregiver assuming the role of a parent whether he or she cared for his or her spouse, parent, or continued their parenting role. The participants of the study spoke about how they experienced a changing of roles as a caregiver. Regardless of the relationship between the caregiver and the care recipient, the caregiver now assumed a parental role, a role in which there is a sense of power, direction, and guidance. The daughter who cares for her mother is now the parent caring for someone who can no longer take care of himself or herself. There is a regression in the care recipient, and throughout the interviews, a regression to a childlike state was observed by the caregivers.
Learned Resourcefulness
The cognitive behavioral skill of learned resourcefulness was used by caregivers. Learned resourcefulness is the belief that a person can cope in difficult situations and in order to do this problem-solving skills are used. Being resourceful can be seen as being able to cope with a difficult situation. When an individual becomes a caregiver, they are unaware of the challenges that may lie ahead yet they learn how to solve problems and find ways to cope with difficult situations.
Perseverance
All participants verbalized either emotional or physical challenges encountered as primary caregivers or a sense of responsibility when assuming the role of caregiver. The concept of perseverance captures how individuals are able to persist in the caregiving role despite ongoing stress or challenges. Taking it a day at a time involved surviving and persevering by the caregivers. Despite the burden experienced, the caregivers persevered because of a sense of duty whether it is associated to marital or societal expectations.
Constant Vigilance
Becoming increasingly watchful or vigilant with the care recipient was reported as a behavior that emerged once they became a caregiver. Constant vigilance can be extremely tiring as the caregiver tries to stay abreast of all things concerning the care recipient. Their constant vigilance was necessary when caring for their loved one. The concepts of changing roles, learned resourcefulness, perseverance, and constant vigilance led to the central theme of moral responsibility.
Moral Responsibility
Moral responsibility explained the behavior of the participant caregivers. The caregivers experienced a sense of moral responsibility and all of the participants verbalized a sense of moral obligation and viewed their role as a caregiver as one that must be fulfilled according to their own personal philosophy of life. Caregivers provide care because they feel that they ought to or feel that they are personally obligated to do so. It becomes more of a duty.
Caregivers act on moral beliefs and, in light of experience, are guided by love, or great reservoirs of compassion. Caregivers are guided by the moral intuitions and moral compass that help them do the best they can for those entrusted to their care, often in circumstances of great difficulty. Moral intuitions do not develop out of nowhere; they are shaped by the cultural undertones of the society in which we live, general culture, and individual role models that have emerged throughout our lives.
Moral responsibility became evident when the caregivers described their caregiving experience, how they became caregivers, and their view on caregiving. The participants’ comments revealed that caregiving for them was a part of life, a responsibility that was theirs, and that there was no other choice than to assume the role of caregiver. All participants in the study felt a sense of moral responsibility as the reason for them taking on the caregiver role.
A commonality amongst all the participants was that being a caregiver happened seamlessly and was very natural to them: “It just became so automatic,” “I don’t know, it just kind of happened. I just slid into the role,” “It’s just something that happens; it’s natural I just can’t see it any other way. I wouldn’t want anyone else taking care of her,” “It wasn’t even a decision. It was just a given,” “It was okay come to my house to live, so that was never like you know a question to him or a decision that we had to make.”
The conceptual model represents how moral responsibility is the core of what affects the attitudes, perceptions, and behaviors of the caregiver. Moral responsibility is what is felt by the caregivers and led them to experience changing of roles, learned resourcefulness, perseverance, and constant vigilance. The dotted lines around each of the categories and core category demonstrate the process is open. Back-and-forth arrows connect the four categories and show how the caregiver experiences movement among these categories. Through the interrelationships, the caregiver experiences the dominant categories. Once this occurs, the caregiver now experiences a change in his or her role.
Caregivers are unsung heroes and play a substantial, and often underappreciated, role. Caregivers will be even more vital as healthcare providers see a rise in chronic disease, and the increasing numbers of aging Americans. As family and friends are called to take action and care for their loved ones, it is important to know what they experience as they transition into the role of a caregiver. The research study aimed at shedding light into the factors that affect family caregivers in their attempt to provide quality care in the home.