Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea

Abstract

The purpose of this study was to describe the meaning of the suffering experience of Korean ALS family caregivers. This is a descriptive phenomenological study that included ten participants using convenience sampling with maximum variation in a tertiary hospital in Seoul, South Korea. Colaizzi’s data analysis method was used to inductively determine themes and formulate meanings. The three main themes derived from analysis were: “frustration with seeing a patient suffering”, “burnout at the cost of a life of dedication”, and “desperate need for help”. Caregivers experience high levels of suffering, which can come in various forms depending on the circumstances of the particular patient and family. Especially, distress from seeing a loved one suffering was another aspect of suffering in Korean ALS caregivers, reflecting strong family ties. At the same time, patients are in desperate need of help and support from their families. Thus, it is essential to provide care to lessen the causes of distress and meet the needs of not only patients, but also caregivers through family-centered care to improve overall quality of life for all involved.

Nivel de adopción del rol del cuidador familiar de personas con enfermedad rara

“…rol total y en el detallado por ítem, muestran un panorama adverso para estas madres cuidadoras, quienes al igual que cuidadores de otros contextos, en particular, de países de medianos y bajo ingresos, viven el cuidado en soledad, frustración, aislamiento, duelo y lucha, falta de preparación y apoyo 19,20,21,22 . A este respecto, es fundamental reconocer que los cuidadores de personas con enfermedades raras son especialmente vulnerables, debido a la poca disponibilidad de información, recursos de apoyo para el cuidado y a la soledad en que viven una experiencia que sin exagerar, difícilmente podrán reconocer en otros 23 . Dicho esto, es necesaria la visibilización no solo de la existencia de enfermedades raras, sino también de los cuidadores familiares, quienes tienen a estar ocultos y sus necesidades desatendidas; por ello, es necesario que, desde el nivel estatal, institucional y profesional, se amplíe la visión hacia este tipo de fenómenos que, no por ser poco prevalentes, son menos importantes 24 .…”

Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups

“…Living with an incurable disease such as ALS can induce negative thoughts and concerns about physical, psychosocial, and existential issues [5]. The emotional distress triggered by the illness is primarily attributed to the loss of independence and the gradual decline in functions and abilities associated with it [6,7].…”

“…The rising demand for caregiving often necessitates leaving employment or scaling back working hours, leading to reduced income and limited career prospects [20]. Consequently, caregivers may experience emotions such as anger, anxiety, stress, fear, frustration, and uncertainty linked to their caregiving role [5,15]. Moreover, as ALS progresses, patients encounter a growing loss of autonomy in their daily activities, rendering them increasingly reliant on their caregivers [21].…”