Life patterns of family caregivers of patients with amyotrophic lateral sclerosis
Open Access
- Author:
- Shipley, Peggy Zoe
- Graduate Program:
- Nursing
- Degree:
- Doctor of Philosophy
- Document Type:
- Dissertation
- Date of Defense:
- April 27, 2012
- Committee Members:
- Janice Lee Penrod, Dissertation Advisor/Co-Advisor
Janice Lee Penrod, Committee Chair/Co-Chair
Susan Jayne Loeb, Committee Member
Sharon Louise Falkenstern, Committee Member
Fred Michael Schied, Committee Member - Keywords:
- family caregiver
health as expanding consciousness
ALS
amyotrophic lateral sclerosis
life pattern - Abstract:
- Background: Amyotrophic lateral sclerosis (ALS) is a progressive, degenerative motor neuron disease that is associated with the loss of upper and lower motor neurons. ALS is a terminal disease that represents an expected death trajectory that impacts greatly on patients as well as the family caregivers who provide the majority of their care. While providing this critically important care, family caregivers face significant threats to their own health, including psychological, physical, and financial distress. Despite the strain placed on these family caregivers, little research efforts have been directed at this caregiving phenomenon. Therefore, the purpose of this research study was to advance understanding of the experience of family caregivers who care for a patient with amyotrophic lateral sclerosis through a unitary transformative lens for the advancement of nursing science. To accomplish this purpose, two aims were established for this research study. Aim 1 was to document the life patterns of family caregivers of ALS patients exhibited through the nurse researcher/ALS family caregiver process of health as expanding consciousness (HEC). Aim 2 was to integrate the life patterns of individual family caregivers of ALS patients into a thematic pattern of the whole representing the ALS caregiving experience across all caregiving families. Methods: The theory of health as expanding consciousness (Newman, 1979, 1986, 1994) is the theoretical framework for the study and basis for the research protocol. The researcher engaged in a nurse researcher/ALS family caregiver process with a purposive sample of eight family caregivers who care for a loved one with ALS. The researcher and families together facilitated pattern recognition, insights, and transformations to discover and describe the everyday world of providing care to an ALS family member. Sixteen audio-taped and transcribed open-ended interviews were analyzed using hermeneutic dialectics. Data collection spanned three months and utilizing researcher as instrument life patterns of health as expanding consciousness emerged as the family caregivers lived day to day providing care to their family member with ALS. Results: Nine patterns of the whole across all ALS family caregivers emerged from the data. These patterns of the whole were: (a) suspicions emerge but ALS diagnosis is delayed, (b) support that helps the caregiver, (c) support can make caregiving more difficult, (d) looking toward the future, (e) adaptations from ALS, (f) obstacles to the caregiving role, (g) caregiver respite, (h) focus of others, and (i) strategies aiding the caregiving role. The nurse researcher/ALS family caregiver process that was revealed in this research study was: (a) establishing a time and place for the nurse researcher and ALS caregiver to form a relationship, (b) developing a bond with each ALS caregiver, (c) creating an atmosphere which allows the caregiver and nurse complete freedom to express themselves openly, (d) offering a sense of timelessness for insights about the ALS caregiving experience, and (e) transformation as the nurse researcher and ALS family caregiver came together to find meaning in the chaotic experience of family caregiving for an ALS patient. Conclusion: This research study examined the experience of family caregivers who care for an amyotrophic lateral sclerosis (ALS) patient within the theoretical framework of Newman’s health as expanding consciousness (HEC). The researcher formed a caring relationship with each family caregiver and made a concerted effort to be fully present in the moment during all interactions with each ALS family caregiver. The caring relationship initiated by the nurse researcher blossomed into a partnership in which both nurse and ALS family caregivers experienced pattern recognition, insight, and transformation. This research provided new insights into the life patterns of ALS family caregivers as well as demonstrated the importance of understanding the meaning of this unique caregiving experience. The insights revealed through this research study disclosed important implications for nursing research and practice while adding to the empirical support of health as expanding consciousness (HEC) and the potential for expansion of this nursing theory and method.