Dealing with stroke: Perspectives from stroke survivors and stroke caregivers from an underserved Hispanic community

Abstract

Globally, stroke is the leading cause of death and disease burden. While post-stroke studies have been conducted, they excluded survivors and caregivers from underserved communities. It can be argued that the impact of stroke on survivors and caregivers from underserved communities may be greater. Using qualitative exploratory research design, the purpose of this study was to examine the lived experiences of post-stroke recovery and readjustment among stroke survivors and stroke caregivers from an underserved community. Two separate focus groups were conducted, one each for stroke survivors and caregivers. Thematic analysis was used to analyze the data. Finding meaning in life is the general theme of stroke survivors' and stroke caregivers' journey of post-stroke recovery and readjustment. For stroke survivors, the transition to stroke recovery required time, life goal reconfiguration, willpower, humor, and network support. Post-stroke caregiving is a daily navigation and negotiation influenced by internal and external processes. Personal, economic, and socio-cultural nuances play a role in how post-stroke recovery is lived and experienced. Study findings highlight the importance of policies to support family-centered and system-level advocacy in post-stroke care.

Family functioning and stroke: Family members’ perspectives

“…In the light of family systems theory, some families have high responsiveness towards helping and empowering members during adversities. Despite the family’s ability to establish a stroke support system during adversities, this study along with that of Torregosa et al ( 2018 ) found that the long-term trajectory of stroke may significantly change functional patterns within the family and compromise its ability to care for other vulnerable members. This study and Gillespie and Campbell ( 2011 ) and Owolabi et al ( 2015 ) found amongst other factors that mostly impair family functioning include the cost of caring for the stroke survivors.…”

“…The inclusion criteria for participation required that participants had to (1) be a family member of a stroke survivor, (2) be residing in the peri-urban community under study and (3) have been providing care for at least 6 months, such as assisting them to assume ADL. Research found that the first 6 months of caring for a stroke survivor is considered the most crucial and challenging period, as the focus is on establishing the best possible care (Torregosa, Sada & Perez 2018 ) and adjusting family routines and processes to accommodate the stroke survivor. The sample size of this study consisted of eight family members (which included parents, children, siblings, and spouses) of a stroke survivor.…”

Family Experience as Caregivers in the Rehabilitation of Stroke Patients: A Literature Review

“…Another qualitative study took family as a stroke caregiver was also conducted in the USA by two researchers. The study was conducted with eight participants who produced three themes: a collection of emotions, readjustment, and prevention [11].…”

“…There are themes regarding obstacles that families must face. These obstacles are conflicting desires related to caring, being busy with work, lack of family assistance or support, lacking care's knowledge and skill, difficulties in meeting basic needs for stroke sufferers, social activities changes, and lack of economy [9,11].…”

Information, Involvement, Self-care and Support - The Needs of Caregivers of People with Stroke: A Grounded Theory Approach

“…With the recent advancements in the medical field, the stroke mortality rate has decreased [2], resulting in more than 80 million people currently living after experiencing a stroke [1]. Of these survivors, up to 50% of individuals are chronically disabled [3], with family members and/or friends assuming the role of caregiver to provide care [4].…”