Background
Methods
Quantitative study methods
Setting
Recruitment
Eligibility criteria
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▪ Stroke of more than 1 month.
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▪ Stable non fluctuating stroke with no acute ongoing neurologic developments.
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▪ With an identified primary care giver greater than 18 years of age.
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▪ No preexisting disability prior to stroke (defined by mRS =0).
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▪ Post procedural stroke like CABG, angiography and post-operative stroke.
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▪ Global aphasia and/or unable to communicate.
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▪ Dementia on Minimental State Examination (of <22), (Due to inability to directly communicate)
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▪ History of ongoing psychoactive substance abuse, presence of psychiatric morbidity before and after stroke which specifically includes manic disorders, schizophrenia
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▪ Associated terminal illnesses like renal failure or end stage cancer.
Assessment tools used in the QOL study
Tool validation and reliability
Sample size calculation
Statistical analysis plan
Qualitative study methods
Participant criteria
Qualitative study procedures
Interview guide
Qualitative analysis
Ethics and human subject protections
Results
Participant numbers and flow
Socio-demographics
Characteristics | N (%) |
---|---|
Age yrsb
| 59(17) |
Male Sex | 241 (68.8) |
Education | |
No School | 113 (32.2) |
Up till 10 grade | 121 (34.5) |
Above 10 grade | 116 (33.1) |
Socioeconomic Statusd
| |
Low income group | 183 (52.2) |
Middle income group | 51 (14.5) |
High income group | 116 (33.1) |
Family status | |
Joint family | 224 (64) |
Nuclear family | 126 (36) |
Marital status | |
Married | 281 (80.2) |
Widowed &Widower | 53 (15.1) |
Unmarried | 12 (3.4) |
Divorced & Separated | 4 (1.1) |
Social Support by Enriched Social Support Inventory | |
Low social support | 126 (36) |
Good social support | 224 (64) |
Health Care Access Factors | |
Received Medical Coverage From Any Organization | 41 (11.7) |
Presence Of Health Care Professional Attendant | 22 (6.2) |
Received Rehabilitation Service | 88 (25.1) |
Stroke Sub-Types | |
Atherosclerotic | 269 (76.8) |
Hemorrhagic | 71 (20.2) |
Unknown | 10 (2.8) |
Duration of Stroke in monthsb
| 13.83 (25.11) |
Hypertension | 278 (79.4) |
Diabetes | 120 (34.2) |
Dyslipidemia | 114 (32.5) |
CVD(Angina, MI) | 61 (17.4) |
Smoking | 91 (26) |
Tobacco Usage | 110 (31.4) |
Central Obesityc
| |
Male | 156 (44.5) |
Female | 83 (23.7) |
Modified Barthel Index for Functional Dependency | |
Minimal dependency | 122 (34.8) |
Mild dependency | 76 (21.7) |
Moderate dependency | 70 (20) |
Severe dependency | 66 (18.8) |
Total dependency | 16 (4.5) |
Functional Assessment Measure FAMa
| 65.7 ± 12.5 |
Modified Rankin Score for Disability | |
Normal | 3 (0.8) |
No significant disability | 74 (21.1) |
Slight disability | 81 (23.1) |
Moderate disability | 66 (18.8) |
Moderately severe disability | 105 (30) |
Severe disability | 21 (6) |
Severity of Stroke assessed by NIHSSa
| 3(5) |
Depression | |
Normal | 137 (39.1) |
Mild mood disturbances | 135 (38.5) |
Borderline depression | 58 (16.5) |
Moderate depression | 19 (5.4) |
Severe depression | 1 (0.2) |
Mild Dementia | 52 (14.8) |
Post-stroke complication | 251 (71.7) |
Pressure Ulcer | 8 (2.2) |
Hospital Admission | 75 (21.4) |
Neurologic pain | |
Mild to moderate pain | 101 (28.8) |
Severe pain | 14 (4) |
Hemiplegic Shoulder | 96 (27.4) |
Fall Events after Stroke | 136 (38.8) |
Urinary tract infection | 21 (6) |
Dysphagia | 48 (13.7) |
DVT | 4 (1.1) |
Mean Quality of life Score a
| 164.18 ± 32.30 |
Post -stroke complications and mean QOL scores
Complications
Caregiver descriptors
Characteristics | N (%) |
---|---|
Age in yearsa
| 39.18 ± 13.4 |
Female Sex | 179 (51.1) |
Relationship of primary care givers to stroke patients | |
Children | 147 (42) |
Spouse | 126 (36) |
Sibling | 37 (10.5) |
Parents | 6 (1.7) |
Othersc
| 34 (9.7) |
Education | |
Illiterate | 51 (14.5) |
Matriculate | 117 (33.4) |
Above 10 years | 182 (52) |
Employment status | |
Employed | 135 (38.5) |
Housewife | 135 (38.5) |
Unemployed | 11 (3.1) |
Retired | 18 (5.1) |
Othersd
| 51 (14.5) |
Stress of primary care giver | |
Likely high stresses | 120 (34.2) |
Mean Stress level of primary care giversa
| 16.67 ± 7.44 |
Health related quality of life of primary care givers assessed by RAND-36 | |
Physical functioningb
| 80 (35) |
Role Limitation due to physical healthb
| 75 (25) |
Role Limitation due to emotional problemsb
| 66.6 (66.6) |
Energya
| 71.5 ± 19.5 |
Emotional well-beingb
| 72.2 (15.4) |
Social functioninga
| 66.3 ± 26.2 |
Paina
| 67.2 ± 21.2 |
General healtha
| 67.4 ± 24.1 |
Left job because of providing care | 20 (5.7) |
Change in working hours because of direct providing care | 180 (51.4) |
Factors affecting QOL
Adjusted β-Coefficient (95%CI) |
P-value | |
---|---|---|
Functional Disability | ||
No significant disability | -9.67 (-25.48 to 6.04) | 0.22 |
Slight disability | -17.74 (-33.61 to -1.83) | 0.02 |
Moderate disability | -21.27 (-37.53 to -5.07) | 0.01 |
Moderately-Severe | -30.27 (-47.30 to -13.27) | <0.01 |
Severe disability | -33.77 (-52.44 to -15.22) | <0.01 |
Functional independence level (FAM) | 0.98 (0.74 to 1.22) | <0.01 |
Severity of stroke(NIHSS) | -1.81 (-2.37 to -1.26) | <0.01 |
Depression | ||
Mild mood disturbances | -10.15 (-13.51 to - 6.81) | <0.01 |
Borderline depression | -16.75 (-21.25 to -12.23) | <0.01 |
Moderate depression | -23.74 (-30.61 to -16.82) | <0.01 |
Severe depression | -26.88 (-54.71 to 1.36) | 0.06 |
Hospital Admissions | -5.51 (-9.23 to - 1.92) | <0.01 |
Neurologic pain | ||
Mild to moderate pain | -0.60 (-3.83 to 2.66) | 0.72 |
Severe pain | -12.41 (-20.10 to - 4.77) | <0.01 |
Mild Dementia | -4.17 (-8.54 to 0.13) | 0.06 |
Qualitative results
Theme |
Category
| Sub-category |
---|---|---|
Impact of stroke on life of patient |
Impact on independent status of patient
| 1. Change in life because of functional dependence. |
Impact on psychosocial behavior of patient
| 1. Patient’s depression. | |
2. Patient’s alterations in behavior. | ||
3. Patient’s reaction regarding their life. | ||
Suffering of patient after stroke
| 1. Uncertainty about future, shock and dismay. | |
Effect on life of primary care givers |
Change in life of primary care giver
| 1. Change in personality of primary care giver guilt, anger and self-blame. |
2. Increased responsibility. | ||
Primary care giver distress
| 1. Primary care giver worries and frustration. | |
2. Effect on health of primary care giver. | ||
3. Reaction of family towards patient condition after stroke. | ||
Primary care giver desire
| 1. Wish support and burden sharing. | |
Quality of life |
Perception of quality of life
| 1. QOL may depend on physical independence, isolation and loneliness. |
2. QOL is affection/ encouragement and giving hope to patients. | ||
How to improve quality of life of stroke patients
| 1. Psychosocial, spiritual teachings and workshops with group activities to give confidence to patient. | |
2. Unfamiliarity with how to improve patient’s QOL. | ||
3. Encourage primary care givers to improve QOL. | ||
4. Proper education of the society to except and help disable people. | ||
5. Restoration of physical functioning is QOL. | ||
Future demands
| 1. Proper health management team to give holistic care to patient and family | |
2. Need of GP system to manage most of the conditions of the patients. | ||
Primary care giver QOL
| 1. Improvement of primary care giver QOL. | |
2. Encouragement and guidance for primary care giver. | ||
3.Establishing a tele-health service. |