SEAMEO-Jasper Fellowship Monograph

1999 Series 7

Older Persons and Their Caregivers:
Stroke as a Critical Life Event in the Filipino Family

 

Dr Rene D. SOMERA

Associate Dean of School of Technology and Student Services
Guam Community College
Mangilao, Guam
 

 

Table of Content

ABSTRACT
I. Background and Rationale of the Study
II. Methodology
III. Sample Population
IV. Instrumentation
V. Methodological Limitations
VI. Summary of Key Findings
  Table 1 Stroke Survivors' Ability to Meet Basic Needs
First and Second Visits
  Table 2 Various Caregiving Situations Considered as Hassles by Caregivers
First and Second Visits
  Table 3 Care-giving Situations Considered as Burdens by Caregivers
First and Second Visits
  Table 4 Coping Strategies Employed By Caregivers
  Table 5 Community Services Availed by the Stroke Survivors
First and Second Visits
VII. Two Voices: Plight of a Stroke Survivor and His Caregiver
VIII. Discussion of Results
IX. Conclusion
X. Recommendations
REFERENCES

ABSTRACT
 

This monograph presents the results of a study on the social and behavioral dimensions of coping and caring for older persons and their families.  Adopting the dyadic perspective of both stroke survivor and caregiver, it probes into the dynamics of the survivor-caregiver relationship and its impact on individual health status and outcomes. It also explores the patterns and issues of coping and care-giving within the fabric of the Filipino family.  Implications and recommendations are drawn from the research findings in order to address the needs of stroke survivors, their caregivers, as well as the concerns of program planners of intervention programs for the older person sector.
 
I. Background and Rationale of the Study
  Stroke or cerebrovascular accident is a major medical problem in developed and developing countries. It is now the leading cause of mortality in the world. According to the World Health Organization, heart disease and stroke killed 15.3 million people in 1995 (WHO 1996 Report). It is also the leading cause of chronic disability and dependence, especially among older persons (Harper, 1996). In the Philippines, cardiovascular diseases have been the major cause of mortality since 1987, followed by diseases of the vascular system (Philippine Health Statistics 1993). This is not surprising, since hypertension, a dominant risk factor for cardiovascular and cerebrovascular diseases, affects approximately 6.5 million Filipinos (Calleja et al., 1996). In 1993, 15.3 % of all deaths were due to diseases of the heart. In the same year, 19,112 people died of cerebrovascular disease, 15,542 of which were above 50 years old (Philippine Health Statistics 1993). This meant that for every 100,000 persons in the population during the year, 28.5 people succumbed to cerebrovascular disease. Furthermore, the longer an individual lives, the more likely that stroke will occur since incidence and mortality double every decade after the age of 50 years (Medical Library, 1996).
  Today, approximately 500,000 people suffer a new or recurrent brain attack each year. Those who survive the incident are often left with a variety of medical problems, including physical and cognitive deficits and speech dysfunction. In addition, stroke survivors are likely to experience a variety of psychological problems arising from concerns regarding their present plight. These include feelings of loss of control, fears about death and disfigurement, social isolation, helplessness and worry about the loss of social roles. Depression and emotional instability are common reactions. These concerns, however, are not felt only by the stroke survivors themselves, but also by their families who are faced with the prospect of long term care of a disabled person, financial and emotional strain, and a major change in family roles (Thompson, et al., 1989).
  Much has been written on the medical aspects of stroke, yet the social and behavioral dimensions of the illness are less explored. It is imperative that these aspects should also be studied since they may be the determining factors in the quality of care the elderly stroke survivors will receive, as well as what their caregivers could provide. The stroke survivors’ and their caregivers’ ability to cope with the illness should also be highlighted, especially in the Philippines, where the family plays an important role in the provision of care to any member who is afflicted with illness. Coping with the changes resulting from stroke can prove to be difficult and frustrating, yet it can also result in psychological and emotional growth for all concerned, particularly in the context of rehabilitation. Providing care requires time and energy, and may dictate some changes in daily arrangements and routines for all members in a given household where the experience of stroke becomes a critical life event in the family cycle.
  Through this study, program and policy planners of intervention programs for older persons can also validate the extent of stroke as a critical life event among Filipino families with stroke-stricken members. They should be guided accordingly in formulating new or strengthening already existing programs for older persons based on the following:
  a) the issues and concerns about care-giving and care receiving raised in this study;
  b) the patterns of coping and caring utilized by both care recipients and caregivers, respectively; and
  c) the necessity of community-based resources and services available to families.
 
II. Methodology
  Descriptive and exploratory by design, the study was conducted for a twelve-month period, from May 1997 to April 1998.  It examined stroke survivors’ and their caregivers’ perceptions on their own respective experiences of the stroke illness.  It delved on the various aspects of the stroke experience, especially the social and behavioral dimensions of coping and caring.  The data gathered from the field were analyzed to describe their status before and after the stroke and to identify the resources that can be useful to both caregivers and care recipients.
  The study utilized both quantitative and qualitative approaches.  The quantitative component consisted of a survey while the qualitative component consisted of case studies generated from a smaller subset of the larger sample.
 
III. Sample Population
  The sample population is composed of 100 near-elderly (50 to 59 years old) and elderly
(60 years and over) stroke survivors (henceforth to be called SS) who had at least one stroke incident in the past year. The respondents’ names were initially obtained through: 
(1) discharge records of six government-owned hospitals, each having at least 100-bed capacity, a rehabilitation unit and serving a wide geographical area; (2) referrals from hospital personnel; and (3) snowballing, or referrals from respondents themselves. Correspondingly, the caregiver (henceforth to be called CG) of each stroke survivor was also included in the sample population.  In other words, there were 100 survivor-caregiver dyads included in the sample population, for a total of 200 respondents in the whole study.
  From this sample, a sub-sample of twenty (20) respondents or ten (10) survivor-caregiver dyads were selected as key informants who underwent a series of in-depth interviews for the qualitative phase of the study.
 
IV. Instrumentation
  Two questionnaires were used in the research: an interview schedule for stroke survivors and an interview schedule for caregivers. The researcher designed the instruments to be as comprehensive as possible to ascertain the factors contributing to the stroke survivors’ present situation and to identify the services that could better assist this special dyadic group of stroke survivors and caregivers.
  The stroke survivor instrument was structured in topical blocks, including social and demographic information, housing and living arrangements, financial resources, social resources, physical and mental health of the stroke survivor and utilization of community services, if available.
  The caregiver instrument was also patterned after the stroke survivor instrument, with topical blocks, which included social and demographic information, caregiving patterns and use of community services.
  After pre-testing the instruments with five (5) survivor-caregiver dyads, the survey was done in two phases: a first visit and a second visit. These post-stroke visits had an interval of at least one month and at most three months, depending on the time availability and willingness of the respondents. Each of these phases corresponded to a stage in the experience of the stroke. The first phase coincided with the initial stage of the stroke experience, which was immediately after discharge from the hospital. The second phase coincided with the later stages of the stroke experience occurring after three months from the initial visit, when adaptation or adjustment to the situation is presumed to have occurred, resulting in more stability and predictability and leveling-off of perceived needs.  This assumption was necessary in order to learn if a relationship existed between coping with the stroke incident and time as a variable, as well as to determine the relationship between caring and coping at different stages of the stroke experience. Moreover, this was done to identify the most appropriate time for initiating effective intervention.
  For each phase, trained interviewers working in dyads administered the questionnaire verbally to each set of respondents. Each stroke survivor was made to answer the questionnaire simultaneously with his or her respective caregiver. Since not all of the stroke survivors were expected to answer the questions in the instrument verbally due to physical and/or psychological limitations, older person-friendly colour-coded flashcards (with answers written on them) were utilized.  Moreover, ample rest periods were also provided. The survivor-caregiver dyads were given the chance to answer their respective questions simultaneously, with the respondents and their respective interviewers having an average distance of about 5-10 meters to minimize discrepancy in their responses. This simultaneous administration of the instrument usually lasted for 30 to 45 minutes, depending on the verbal ability of the respondents, and other extrinsic factors (e.g., caregiver doing housework during interview, noise, etc.). 
  The qualitative aspect of the research consisted of case study analyses. A subset from the sample population composed of ten (10) stroke survivors and ten (10) caregivers were interviewed in-depth in order to explore the topics included in the stroke survivor and caregiver instruments more fully. The respondents for the case studies were chosen based on the following inclusion criteria: (a) verbal ability, (b) mental alertness, and (c) uniqueness of case. Three interview guides were utilized for this purpose: one for the stroke survivor, one for the caregiver, and one for home and environment context. The interview guides consisted of open-ended questions to obtain more meaningful answers. Probing was also extensively utilized.
  The case study interview guides for both the stroke survivor and caregiver had the same topics of inquiry but the questions were phrased according to respondent type. The topics of inquiry were the following: social and cultural dimensions of stroke, patterns of care receiving or care-giving, and assessment of family and community resources available. The home and environment interview guide, on the other hand, was used to obtain information about the household dwelling, family membership profile, income, health practices and illnesses, among others.
  The in-depth interviews were all recorded on tape, transcribed verbatim and eventually written into case studies. In-depth analysis of the stroke experience was later extracted to obtain the important lessons that can be learned from the stroke experience vis-à-vis coping and caregiving patterns attendant to the illness.
 
V. Methodological Limitations
  The data collection started with an initial sample of 223 cases culled from hospital discharge records of those who were confined due to stroke in six (6) government hospitals under the management control of the Department of Health in the Philippines. During the data collection process, many cases were lost for several reasons as indicated below:
  A. Before the first visit: 123 cases were lost
    Deceased……………………………………...36
Outright refusal……………....…………….....13
Change of address………..………….……….15
House was not located…………………….....43
Failed to contact SS/CG…………….…….....16

Total number of cases during the first visit: 100 survivor-caregiver dyads
 
  B. Before the second visit: 10 cases were lost
    Deceased………………………………...……...4
Outright refusal…………………………....….…3
Change of address/left city………………....….3

Total number of cases during the second visit: 90 survivor-caregiver dyads
 
  In addition, incomplete addresses of the respondents (as obtained from hospital records), as well as other factors such as inclement weather and inaccessibility of house location, also contributed to the loss of cases during the first visit.
  On the whole, a total of 100 survivor-caregiver dyads were included in the study. However, the sample decreased by 10% by the second visit. One of the stroke survivors refused to be interviewed because his wife, his primary caregiver, was hospitalized at the time. Their roles in fact reversed; the stroke survivor in the first visit became the caregiver during the second visit.  Three stroke survivors had decided to leave the city in order to recuperate in their respective provinces. On the other hand, four of the stroke survivors died within the three–month interval period between the two visits.
 
Last updated: 19 August 2002 Arrowback.gif (1004 bytes) arrow.gif (1001 bytes)

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