stroke as a critical life event in the filipino family ... · stroke as a critical life event in...

stroke as a critical life event in the

Filipino family

Rene D. Somera , Ph.D.

De La Salle University

Manila, Philippines

stroke as a critical life event in the

Filipino family

Rene D. Somera , Ph.D.

De La Salle University

Manila, Philippines

g i v e r sg i v e r s

O ld e rO ld e rp e r s o n sp e r s o n s

a n d t h e i ra n d t h e i r

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MENDATION

S U M M A R Y O F RESULTS

RESULTS

LIMITATIONS

M E T H O D O L O G Y

OBJECTIVES

The Philippines

METROMANILA

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OBJECTIVES

To describe the social and culturaldimensions of stroke as a critical lifeevent among a selected group ofolder persons and their familycaregivers

To gain insights into the patterns of caregiving for older person stroke survivors within Filipino families

OBJECTIVES

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To provide an assessment of the family and community resources available to older person stroke survivors and their caregivers, as well as the nature and extent of the utilization of these resources

OBJECTIVES

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Study’s Framework

Community /Family Context

Older Person

Stroke Survivor

Rehabilitation/Recovery

COPING

Family Member

Caregiver

Response to Stroke

CARING

Resources

FamIly

CommunIty

STROKE

Older Person

Stroke Survivor

Rehabilitation/Recovery

COPING

Family Member

Caregiver

Response to Stroke

CARING

STROKE

Resources

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OBJECTIVES

The study is descriptive and exploratory by design.

It utilized both quantitativeand qualitative approaches.

The quantitative component consisted of a survey while the qualitative component consisted of case studies.

METHODOLOGY

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METHODOLOGY

The sample populationconsisted of 100 strokesurvivor-caregiver dyads.

The stroke survivors were aged 50 years old and above and had at least one stroke incident in the past year.

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METHODOLOGY

The respondents names were obtained through:

discharge records of six DOH-

retained hospitals, each having atleast 100-bed capacity, arehabilitation unit and serving a

wide geographical area

referrals from hospital personnel

snowballing \ referrals from

the respondents

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RESULTS

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OBJECTIVES

METHODOLOGY

From the sample, 10 stroke survivor-caregiver dyads were chosen as key informants who underwent a series of in-depth interviews.

Two questionnaires were used in the research: a separate interview schedule for stroke survivors and caregivers.

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METHODOLOGY

The survey interview was done in two phases:

First visit - done four weeks afterdischarge from the hospital

Second visit - occurred three months after the initial visit

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METHODOLOGY

For each phase, each of thestroke survivors was made toanswer simultaneously with hisor her caregiver, having anaverage distance of 5-10 metersto minimize discrepancy in theirresponses. Color-codedflashcards and rest periodswere provided to strokesurvivors

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METHODOLOGY

The qualitative aspect of the studyconsisted of case study analyses

The key informants (KI’s ) werechosen based on the ff. criteria:

mental alertness

verbal ability

uniqueness of case

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OBJECTIVES

METHODOLOGY

Three interview guides were utilized for the in-depth interviews: one for the stroke survivor, one for the caregiver, and one home and environment guide.

The in-depth interviews were all recorded on tape, transcribed and finally written into case studies.

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METHODOLOGY

In-depth analysis of the strokeexperience was later onextracted to obtain theimportant lessons that can belearned from the strokeexperience, in terms of copingand caregiving attendant to theillness.

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METHODOLOGICAL LIMITATIONS

LIMITATIONS

Loss of cases due to:

jincomplete address obtainedfrom hospital dischargerecords

jdeath of respondent

joutright refusal of therespondent

jchange of address of therespondent

juncontrollable factors suchas inclement weather

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OBJECTIVES

LIMITATIONS

The data collection started withan initial sample of 223 casesculled from hospital dischargerecords of those who wereconfined due to stroke\cerebrovascular accident in sixDOH-retained hospitals. Fivestroke survivor-caregiver dyadswere utilized for pre-testing thequestionnaires.

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Before the first visit:123 cases were

Z deceased………………….. 36

Z outr ight refusal…………… 13

Z change of Address………. 15

Z house was not located….. 43

Z fai led to contact SS/CG… 16

*Total number of cases during

the 1st visit: 100 stroke

survivor-caregiver dyads

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Before the second visit: 10

cases were lost

Z d e c e a s e d … … … … … … … … 4

Z outr ight refusal……………. 3

Z change of address\

le f t c i ty……………….. 3

*Total number of cases during the

2nd visit: 90 strokesurvivor-caregiver dyads

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RESULTS

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OBJECTIVES

Some selected informants

Aling Tinay, 81 and Mang Pedring, 63

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OBJECTIVES

Mang Baldo, 67 and Ester, 27

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OBJECTIVES

Mang Jose, 54 and Aling Desa, 57

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Mang Inggo, 84 and Aling Lily,42

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OBJECTIVES

Mara, 27 and Mang Tonio , 64

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Profi le of SS Respondents

F e m a l e

RESULTS

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OBJECTIVES

RESULTS

Civil Status of SS Respondents

FemaleSeparated

Widowed

Married

SingleRESULTS

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OBJECTIVES

RESULTS

Educational Attainment of SS

Female

RESULTS

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OBJECTIVES

RESULTS

Number of Stroke Incidents

exper ienced by SS

1 71 9

First Stroke

Second Stroke

Third Stroke

Fourth Stroke

Fifth Stroke

>5 stroke incidentsRESULTS

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Relationship of SS to Caregiver

41 2 1 1

1 1 2 2

50SpouseDaughterDaughter-in-lawSonBrotherSisterMotherFatherFather-in-lawOther relativeGrandparentFriendRESULTS

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RESULTS

Worse Better Remained the

SSs' Perceptions of Financial Situat ion

F i r s t V i s i t

S e c o n d V i s i t

RESULTS

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RESULTS

SSs' Sources of Financial Support

83 3 5

SpouseSon

Daughte

Siblin

er Rela

Friend

Insura

nce Agency

First Visit Second Visit

RESULTS

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OBJECTIVES

RESULTS

949798

1st Visit

n = 100

2nd Visit

n = 90

SS's Abi l i ty to Meet Basic Needs

Housing

Clothing

Medical Care

Recreation

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RESULTS

74%78%

83.30%

37.80%

SSs' Sources of Social Support

Family 74% 83.30%

Other People 78% 37.80%

First Visit Second Visit

RESULTS

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RESULTS

SSs' Perception of Own

Physical Health Status

Poor Fair Good Excellent

First Visit

Second Visit

RESULTS

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Profi le of Caregiver Respondents

Male Female

RESULTS

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OBJECTIVES

RESULTS

Civil Status of CG Respondents

10 107

Single Married Widowed Separated

Female

RESULTS

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RESULTS

Educational Attainment of CG

38Elementary

High School

College Level

College Graduate

Post-Graduate

VocationalRESULTS

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14 14 14

Bi r th Order o f CG Respondents

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13 3 2 2

Spouse

Daughter

Daughter - in- law

Brother

Sister

Mother

Grandchi ld

Fr iend

Relationship of CG to SS

RESULTS

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RESULTSSELECTED CAREGIVING SITUATIONS

CONSIDERED AS HASSLES BY C G s, 1st visit

Si tuat ion

1 . Extra expenses incurreddue to careg iv ing

2. SSs ’ hea l th dec l ined 4 4 %

3. Superv i s ing SS in do ingt h i n g s

4. He lp ing SS in persona l caren e e d s

5 . R e c e i v e d n o h e l p f r o mfami ly & f r i ends

2 7 %RESULTS

Note: computed by giving a score of one for every

situation with entry of very distressing (code 4);

includes caregivers with total score of at least 5 out

of perfect score of 8.

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RESULTS

SELECTED CAREGIVING SITUATIONSCONSIDERED AS HASSLES BY C G s, 2nd VISIT

S i t u a t i o n S e c o n d V i s i t

1 . S S s ’ h e a l t h d e c l i n e d 4 0 %

2 . S S s ’ u n r e s p o n s i v e n e s s 2 1 %

3 . S u p e r v i s i n g S S i nd o i n g t h i n g s

1 8 . 9 %

4 . R e c e i v e d n o h e l p f r o mf a m i l y o r f r i e n d s

E x t r a e x p e n s e s d u e t oc a r e g i v i n g

1 4 . 4 %

5 . S S s ’ c o n f u s i o n 6 . 7 %

RESULTS

Note: computed by giving a score of one for every

situation with entry of very distressing (code 4);

of perfect score of 8.

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RESULTS

CAREGIVING SITUATIONS CONSIDEREDAS BURDEN BY CAREGIVERS,

1st & 2nd VISITSSituation F irst Second Visit Visit

Taking care of SS

when not feeling well 17% 4.4%

It’s hard on me emotionally 5% 0%

It caused my health to get worse 6% 0%

Care costs more than I can afford 38% 11.1%

I have to give him constant attention 37% 3.3%

SS gets confused 25% 5.6%

SS embarrasses me or others 22% 0%

SS lapses into senility 10% 2.2%

SS becomes upset & yells at me 22% 5.6%

RESULTS

Note: computed by giving a score of one for everysituation with entry of great deal(code 4); includes

caregivers with total score of at least 5 out of a

perfect score of 9.

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RESULTS

COMMONLY USED COPING STRATEGIESEMPLOYED BY CAREGIVERS

First Visit

1. “not blaming others” 95%

2. “hoping that things will get better” 94%

3. “not taking tensions out on others” 93%

Second Visit

1. “not blaming others” 97.8%

“not taking tensions out on others” 97.8%

2. “not getting mad” 95.6%

3. “trust in the Lord” 93.3%

“withdraw from the situation” 93.3%

RESULTS

Note: computed by giving a score of one for everysituation where the caregiver can cope well;

of a perfect score of 34.

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OBJECTIVES

RESULTS

C A R E G I V I N G H A S S L E S , C A R E G I V I N G B U R D E N

& C O P I N G I N D E X A M O N G C A R E G I V E R S ,

1st&2nd VISITS

Caregiv ingAspects

F irs tVis i t

S e c o n dVisi t

Z -va lues

Hass l e 1 2 0 % 2 . 2 % 4 . 1 7 * *

B u r d e n 1 1 0 % 1 . 1 % 2 . 8 0 * *

C o p i n g 2 5 1 % 67.8% -2 .45**

**-p<0.01

RESULTS

Note: 1 - gives no. of caregivers who f inds

providing care very distressing

2 - includes caregivers who can cope well

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RESULTS

7064 64 62

Services Avai led by SS, F i rst V is i t

Help in personalcare

Learning arm or legexercises

Help in dealing withemotions

Hospital aftercare

Help withprescriptions

Help with financialplanning

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RESULTS

65.668.9

Services Avai led by SS, Second Vis i t

Help in personalcare

Finding/organizingservices SS needs

Hospital aftercare

Help withprescriptions

Help with financialplanning

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SUMMARY OF RESULTS

Majority of the SS have low educational

attainment which has profoundimplications on their awareness aboutstroke and factors which may

predispose them to the i l lness.

S U M M A R Y O FRESULTS

SS respondents have low

socio -economic status, are at risk forvarious il lnesses as well as for socialisolation as a consequence of i l lness.

There were more male SS respondents

which may be attributed to theirlifestyles.

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SUMMARY OF RESULTS

Majority of the stroke survivors are

dependent on their families forfinancial support.

Majority of the SS experienced

stroke for the first time.

Most of the SS were parents who have

to perform their parental roles even ifthey are stil l on the period of recovery.

Most of the SS perceived their

situation to be worse for both the first and the second visits.

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SUMMARY OF RESULTS

Support from the family significantly

increased during the second visit;support from other people considerablydeclined.

Medical care was not well provided

to the stroke survivors, as perceived by the SSs, themselves.

Support is more apparent during the

first visit after the stroke occurred.

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RESULTS

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OBJECTIVES

SUMMARY OF RESULTS

The caregivers in the study were mostly

females; mostly immediate familymembers and were mostly the eldestchildren.

Increase in the number of stroke survivors

who are able to perform instrumental activities of daily living was significant and implied an improvement in the

over-all health status of the SS.

The majority of the SS expected additional

support on both visits; the need for psychosocial and economic support is more apparent during the first visit.

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OBJECTIVES

SUMMARY OF RESULTS

The C G s were more highly educated

than the SSs; their level of awarenessabout stroke, however, did not differmuch from that of the SSs.

The decline in the SSs’ health was

what the C G s found as the mostdistressing by the second visit.

Financial constraints associated with

caregiving was what the C G s foundas the most distressing aspect ofcaregiving during the first visit.

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OBJECTIVES

SUMMARY OF RESULTS

The cost of health care which is more

than what the CGs could afford is themost commonly encountered burden forboth visits.

The nature of health services available in

the community is virtually unknown to almost all of the respondents.

There was an increase in the number of

C G s who are able to cope well by the second visit, as revealed by the coping index.

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SUMMARY OF RESULTS

Community health services are not

availed of by the majority of therespondents.

Information about the existence of

community services and the involvement of family CGs in community efforts is virtually non-existent.

Reasons cited for not avail ing community

health services are inadequacy ofservices particularly those that wouldaddress the SSs’ rehabilitation needs,

lack of equipment and trained personnel.

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LIMITATIONS

OBJECTIVES

RECOMMENDATIONS

MENDATION

More systematic and efficient record-keeping in government hospitals

Consistency in patient profile information

The institution of a computerized data base management system in the Records Division of government hospitals, as a long range goal

Research

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RECOMMENDATIONS

MENDATION

The need for a longitudinal studythat would further investigate the patterns of post-stroke management in the home

A study over a longer periodof time, preferably from one totwo years after the stroke,would yield richer insightsinto the dynamic processes ofstroke rehabilitation, bothfrom the perspective ofpatients and caregivers.

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RECOMMENDATIONS

MENDATION

The use of controlled comparison in a future study

This would clarify whetherthere is a significantdifference in perceivedburden between two groupsof users and non-users ofservices available in thecommunity

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RECOMMENDATIONS

MENDATION

This would generate comparisons in illness management within the Filipino home setting.

Replication of the study in the context of other illnesses that require long-term care

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RECOMMENDATIONS

MENDATION

Program

The existing programs in the Department of Health’s Non-Communicable Disease Control Service (NCDCS) - Cardiovascular, Health Care Program for Older Persons (HCPOP), and Community-Based Rehabilitation Program (CBRP) must be strengthened further, giving due consideration to these recommendations, as follows:

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RECOMMENDATIONS

MENDATION

Close coordination with hospital

personnel in the identification of stroke survivors and families who could be beneficiaries of CBRP services.

This process should begin

immediately during the patient’s hospital stay . Since this study util ized DOH-retained hospitals as

contact points, this is where the collaborative l inkage should begin.

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RECOMMENDATIONS

The link is important for CBRPimplementors , for purposes ofmonitoring and evaluation ofpatients’ progress. Moreover, it iscrucial for caregivers to have asense of support for thecaregiving role in the criticaltransition point between thehospital and the home.

MENDATION

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RECOMMENDATIONS

MENDATION

Partnerships with family members of disabled persons (such as stroke survivors)

The family caregiver, in particular, must be included in CBRP’s training of trainers on basic rehabilitation services, in addition to other identified volunteers from the community.

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RECOMMENDATIONS

MENDATION

Establishment of a pool of community volunteers who could serve as proxy caregivers

Periodic relief for caregivers from CBRP community volunteers could reduce caregiving strain considerably.

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RECOMMENDATIONS

MENDATION

Formation of social support networks within the community for stroke survivors

A caregiver support group can be a strain reliever for family caregivers.

Interaction of these two groupscould spell a betterunderstanding of theirrespective situations.

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RECOMMENDATIONS

MENDATION

IEC campaign within thecommunity regarding healthpromotion in general and disabilityprevention in particular

Mechanisms for a continuous andregular evaluation of the demandfor rehabilitation services shouldbe instituted

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RECOMMENDATIONS

MENDATION

The design of 30-second radio and television spot advertisements should be an effective strategy for better audience retention.

Media campaign activities on the prevention and causes of disability (particularly stroke) with a national audience

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RECOMMENDATIONS

MENDATION

W iden the geographical coverage area of CBRP services in order to reach the clientele it seeks to serve

Link with community health centers

Health services offered by thehealth center should beexpanded to include rehabilitationhealth services and manned bytrained personnel to deliver theservices needed by its targetclientele.

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RECOMMENDATIONS

MENDATION

Policy

A national subsidized home care program for Persons With Disabilities (PWDs)

This subsidy moreover wouldencourage families to take careof their disabled elderly memberby providing them resources fortheir basic needs - proper diet,medicines, some capital forincome-generating projects, andsome means to make themparticipate in community activities.

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RECOMMENDATIONS

MENDATION

Strengthen and broaden rehabilitationand health services for disabledpersons through:

Lobbying for the passage of legislation that would provide for the inclusion of temporary

and long-term support of families with disabled members, particularly the elderly.

Reimbursement for home care of P W D s, particularly lay caregivers

of disabled persons, may be the significant centerpiece of this

legislation.

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RESULTS

LIMITATIONS

OBJECTIVES

RECOMMENDATIONS

MENDATION

Development of awareness programs for local officials, community leaders and families to consolidate and reinforce their role in facilitating the improvement of health rehabilitation services within the community context.

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OBJECTIVES

Making the study resultsuseful and practical

what every family caregiver of

older persons should know

A Primer

English version

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RESULTS

LIMITATIONS

OBJECTIVES

Making the study resultsuseful and practical

mga dapat malaman ng tagapagkalinga

sa mga nakatatandangkapamilya

Isang Praymer

Tagalog version

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stroke as a critical life event in theFilipino family

stroke as a critical life event in the filipino family ... · stroke as a critical life event in...

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