Caregivers' Lived Experiences in Providing Care for Vegetative Patients: A Phenomenological Inquiry
Roselyn Bulauan | Jennifer Anne Arada | Jean Aiza Espiritu | Helen Villaraza
Discipline: counselling, psychotherapy and occupational therapy
Abstract:
spiritual dimensions, represent a critical area of study for healthcare professionals aiming to
offer comprehensive support. This study, conducted at a Manila tertiary hospital over two weeks
in April 2023, utilized an in-depth interview guide to explore the experiences of four diverse
caregivers tending to individuals in a vegetative state. Findings revealed four prominent themes:
the willingness to assume the caregiver role, lifestyle and social alterations, fear of the unknown,
and personal struggles along with coping mechanisms and support systems. The intimate, personal
interviews provided a deep understanding of the caregivers’ multifaceted challenges. Caring
for a loved one in a vegetative state demands substantial emotional and physical tolls, leading
to daily anxiety and concern. Recognizing the complexities of their situation and providing the
necessary support can significantly alleviate the burdens they face. Moreover, for these caregivers,
it becomes a way to reciprocate the love and care previously bestowed upon their loved ones
enduring such a condition. This exploration underscores the demanding nature of caring for those
in a vegetative state within a familial setting, highlighting the imperative need for holistic support
systems and interventions. Understanding the intricacies of caregivers’ experiences is pivotal in
designing effective strategies to mitigate their challenges and offer the necessary assistance and
care.
References:
- Abebe, A., Arba, A., Paulos, K., Abera, W., Sidamo, T., Shiferaw, S., Abraham, Z., Baza, D., Nega, B., & Woldeyohannes, S. (2022). The lived experience of primary family caregivers of patients on hemodialysis treatment in Southern Ethiopia: A phenomenological study. International Journal of Nephrology and Renovascular Disease, 15, 41–52. https://doi.org/10.2147/IJNRD.S353191
- Appel, J. M. (2020). Some people in persistent vegetative states have working minds. Does keeping them in limbo amount to torture? STAT. https://www.statnews.com/2020/01/09/working-mind-body-vegetative-state/
- Burton, A. M., Kwak, J., & Haley, W. E. (2004). Elder caregiving. In Encyclopedia of Applied Psychology (pp. 703–711). Elsevier. https://doi.org/10.1016/B0-12-657410-3/00721-2
- Chinner, A., Pauli, R., & Cruse, D. (2022). The impact of prolonged disorders of consciousness on family caregivers’ quality of life: A scoping review. Neuropsychological Rehabilitation, 32(7), 1643–1666. https://doi.org/10.1080/09602011.2021.1922463
- Covelli, V., Cerniauskaite, M., Leonardi, M., Sattin, D., Raggi, A., & Giovannetti, A. M. (2014). A qualitative study on perceptions of changes reported by caregivers of patients in vegetative state and minimally conscious state: The “time gap experience.” The Scientific World Journal, 2014, 1–9. https://doi.org/10.1155/2014/657321
- Figueiredo, D. (2017). Caregiving and carer stress. In N. A. Pachana (Ed.), Encyclopedia of Geropsychology (pp. 445–455). Springer Singapore. https://doi.org/10.1007/978-981-287-082-7_351
- Giorgi, A. P., & Giorgi, B. M. (2003). The descriptive phenomenological psychological method. In P. M. Camic, J. E. Rhodes, & L. Yardley (Eds.), Qualitative research in psychology: Expanding perspectives in methodology and design (pp. 243–273). American Psychological Association. https://doi.org/10.1037/10595-013
- Maiese, K. (n.d.). Vegetative state and minimally conscious state - Neurologic disorders. In MSD Manual Professional Edition. Retrieved December 11, 2023, from https://www.msdmanuals.com/professional/neurologic-disorders/%20coma-and-impaired-consciousness/vegetative-state-and-minimally-conscious-state
- Matzek, A. E. (2011). The impact of family and non-family roles on caregiver health over time. http://conservancy.umn.edu/handle/11299/109832
- Smith, M., MA. (2023). Five stages of family grief: Saying goodbye to a loved one. HelpGuide. https://www.helpguide.org/harvard/saying-goodbye.htm
ISSN 2799-0583 (Online)
ISSN 2782-9413 (Print)