Descriptive Study of African American CareGivers for Dementia Family Members

Abstract

The purpose of this descriptive study is to take an in-depth look at married African American caregivers for their spouses with dementia. For the given research, two former dementia caregivers have been interviewed. Both participants come from Macomb, the County area. In-depth interviews were carried out. The answers of the interviewees were recorded and used as the primary source of data for this study.

The conversation between the interviewer and the participants of the research was guided by an in-depth protocol that was based on journal articles on caregiving for people with dementia. The research results have shown the reasons for African American people to provide home nursing services for their relatives, who suffer from dementia. Among the themes,

1. emotional and psychological issues,
2. unexpected medical intervention,
3. behaviors predisposed by dementia and
4. safety issues should be named.

However, the research has also shown that providing informal care for relatives and friends with dementia can be very challenging and complicated. There are many positive aspects associated with this form of caregiving, such as the caregiver feeling proud and worthy, as well as the patients having more opportunities to engage in social interactions and have the support of a loving spouse. The study results have shown that home caregiving is an extremely difficult experience; however, with due effort applied, one can create a comfortable environment for both a patient and a caregiver in the African American community.

Statement of Topic

This study includes coding an interview of an African American couple married for forty years. The husband, born in Macomb, MI, and aged 60, retired from the United States Air Force 30 years ago. The wife, born in Brigham, Alabama and aged 66, is a retired school principal. The couple has two adult children, the daughter (26), who is in a relationship, a son (30), who resides in California, and a grandchild (18), who lives with a partner. The couple has been caregiving most of their life. The intent of this descriptive study is to conduct a deep analysis of the methods by which African Americans can provide care for their family members, friends, and church members.

Interview Protocol

Institutions:

Interviewees: Mr. and Mrs. Stein (“Participants,” P)

Interviewer: W. G. (“I”)

Survey sections used:

• Interviewees’ background
• Premises for caregiving
• Range of patients
• Types of treatment used
• Motivation
• Possible issues faced by caregivers
• Number of unsuccessful cases of caregiving
• Coping mechanisms

Interview

I: Who were your next patients?

P: The grandfather said that he needed help with grandma – she was senile by then and could only perform the basic functions and commands. It was not until she developed severe dementia that doctors finally recognized the problem with her. We decided that she would not survive in a nursing home without us and grandpa, so we started taking care of her.

I: Was the nursing process complicated?

P: We loved our granny, but soon we started noticing that the nursing process demanded too much from us in terms of emotional involvement. We had to stay positive no matter what, and finally felt completely devastated.

I: How did you manage to overcome this crisis?

P: We used our sense of humor to handle conflict situations. We had to laugh; otherwise, we would have gone crazy. We prayed, and, together with our love and hopes, our prayers helped us deal with the problems that we faced.

I: Thank you for the interview. Best of luck to both of you!

P: And thank you, too. Goodbye.

Interview Coding

Seeing how the interview addresses the issue of caregiving among the representatives of African American community, it will be most reasonable to include the categories that relate to both general problems of caregiving and nursing, as well as particular issues that the representatives of the specified community have encountered when giving care to those in need (Merrit, McCallum & Fritsch, 2011).

As one can notice, the given method of coding allows comprising the elements of caregiving theory and the items concerning the personal reaction of the caregivers towards the process of giving their services to the community members. Although the given approach can be seen as lacking incoherency, it allows for incorporating the process and the individual reactions towards the stages of the given process, therefore, offering a unique analysis of caregiving in African American community.

The issue in question can be related to several domains, the key one being health. Indeed, seeing how the health services that the interviewed couple has been providing for years for the members of the African American community to the members of the latter is the focus of the research, it will be reasonable to claim that the health domain, which caregiving belongs to, is the key one for the given paper. In addition, it is worth noting that the research is restricted to studying the attitudes and strategies appropriate and acceptable within the African American community. Thus, the claim of the given paper also belonging to the ethnicity domain will be quite legitimate (Carter & Danner, 2004).

Finally, seeing how the interviewed couple put very strong stress on the emotional aspect of caregiving and the complexities associated with the role of a caregiver, in particular, one may assume that the social and personal responsibility domain is the third and the nonetheless important one in the given research. To be more particular, the aspect of emotional involvement is being touched upon in the interview.

Plan of Analysis

When it comes to deciding what themes and topics that should be developed from the interview provided above, one must admit that the following issues are of most interest:

1. What are the basic principles of caregiving practices in the African American community?
2. What are the key functions of a person providing nursing services to patients with dementia?
3. Does a caregiver has the right to be emotionally involved with their patient, and is such emotional involvement in chord with the basic principles of nursing ethics?
4. If a caregiver has been providing their services for quite a long, how can a patient regain self-sufficiency, independence and belief in themselves?
5. Is there any basic difference between the common caregiving principles and the ones that are acceptable and applicable to the African American community?
6. If emotional involvement is the key feature of caregiving for African American patients with dementia, is the caregiving process more emotionally challenging in the given environment?
7. Granted that the nursing process is much tenser in the African American community because of the emphasis on the emotional connection between a patient and a nursing specialist, how can the nursing process be organized (scheduled) for caregivers to have enough strength to provide the nursing services of the best quality?

The plan of the interview analysis is going to be based on the information suggested by Hennink, Hutter and Bailey. According to the three authors of Qualitative research methods, it is most appropriate to apply the grounding theory to the analysis of an interview; in other words, the theory that the final stipulations and conclusions are going to be based on should be developed from the textual data obtained from the research participants. To be more exact, four stages are to be reached in order to develop a cohesive theory; in particular, 1) textual data is to be obtained, 2) codes are to be derived from textual data, 3) categories are to be linked (categorization), and 4) a cohesive theory must be developed (Hennink, Hutter & Bailey, 2011, p. 263).

Applying the aforementioned rules to the interview under consideration, one will be able to structure the existing data in the following way and make the following conclusions:

As the table above shows, the evaluation of the couple’s responses to the questions concerning their experience as caregivers in the African American community has led to developing a theory regarding nursing services provision for African Americans in terms of caregiving theory, practice and the role, responsibilities and rights of the people providing nursing services. The analysis has shown that, due to extremely high emotional tension that emerges in the process of caregiving because of the cultural specifics, i.e., the need to be fully involved with the patient, it is recommended that caregivers should be provided with an opportunity to have short yet very frequent vacations.

More to the point, due to the need to maintain an unceasing nursing process, it is desirable that a specific schedule should be provided for the caregivers. Finally, patients’ independence issue should also be touched upon; as the interview has shown, too much care leads to the caregiver’s exhaustion and overprotection, which results in the latter’s depression (Williams, 2004) and enhanced care, thus, the circle closing up: “depressed caregivers may be more likely to overestimate the physical limitations of the patient” (Newcomer, Fox, Wood, Sands, Dane & Yaffe, 2003, 1013). That being said, it is obvious that caregivers must form strong links to their patients so that the latter could be provided with an opportunity to integrate into society faster and recover from the disorder or disorders that they suffer from.

List of Codes

To decipher the codes used in the course of the interview analysis, the following descriptions should be used:

• Emotional attachment to the patient (empathic stance, sensitivity and responsiveness);
• Functions performed by the caregiver (support and assistance);
• Feelings that a patient develops towards the caregiver (sympathy, trust);
• Negative outcomes of a patient dependency on the caregiver (lack of independence);
• Negative outcomes of caregivers’ unceasing work (lack of focus, weariness, stress);
• Solutions for caregivers developing weariness, stress and lack of focus (vacation and a better schedule).

Despite the fact that the codes derived from the interview with the couple are relatively few, they provide a decent foil for further research of the problems faced by African American caregivers and developing possible solutions for these problems. The uniqueness of the situation is predetermined by the combination of the health issues and the cultural peculiarities of the African American community.

Reference List

Carter, A. & Danner, D. (2004). Facial behaviors of dementia patients observed by their African American caregivers. The Gerontologist, 44(1), 411.

Hennink, M., Hutter, I. & Bailey, A. (2011). Qualitative research methods. Thousand Oaks, CA: SAGE.

Merrit, M. M., McCallum, T. J. & Fritsch, T. (2011). How much striving is too much? John Henryism advice coping predicts worse daily control responses for African American but not white female dementia family caregivers. The American Journal of Geriatric Psychiatry, 19(5), 451–460.

Newcomer, R., Fox, P., Wood, J., Sands, L., Dane, K., Yaffe, K. (2003). Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of General Internal Medicine 18(12), 1006–1014. Web.

Williams, C. (2004). The physical health of African American dementia caregivers. The Gerontologist, 44(1), 237.