The Impact of Psychosocial Burdenof Spinal Cord Injury
Survivors on the Family Caregivers
Hamida Begum,1Sardar
Ali,2Dildar Muhammad,2Asghar Khan3
1: College of
NursingBannu, Pakistan.
2: Khyber
Medical University, Peshawar, Pakistan.
3: Pak-Swiss
Nursing College, Swat, Pakistan.
Correspondence
to; Dr. Asghar Khan
Email: asghar802@gmail.com
, ORCID: 0000-0003-1351-2833
https://doi.org/10.36570/jduhs.2020.1.900
ABSTRACT
Objective:
To evaluate the psychosocial burdenamong family caregivers of
spinal cord injury survivors, attending Paraplegic Center Hayatabad, Peshawar,
Pakistan
Methods:
An analytical cross-sectional study was conductedfrom May 2018
toAugust 2019 in Paraplegic Center Hayat Abad Peshawar, Pakistan. Data were collected
from family caregivers by using Zarit Burden Interview version-22. The psychosocial
burden has been categorized in questionnaire as 0-20 no burden , 21-40 mild ,
41-60 moderate and 61-80 severe burden .The burden was assessed in the form of
feeling strained and stressed, embarrassed, angry, privacy deprivation, insufficient
friends, financial constraints, loss of control over life and failure in
providing care.
Results:
Of 105 individuals, 39 (37.14%) individuals had mild, 58
(55.23%) had moderate and 8 (7.62%) had severe psychosocial burden. Moderate psychosocial
burden was found to be higher in females (23/33, 69.6%), individuals with
≤matric educational status (36/59, 61%), unemployed individuals (48/80,
60%), married (38/67, 56.7%), and having duration of care >2 months (22/35,
62.9%). In total, 66 (87.87%) individuals had moderate and severe psychosocial
burden. A significant association of psychosocial burden (moderate and severe)
was observed with gender (p-value 0.022) and employment (p-value 0.025).
Conclusion:
The findings concluded that caregivers of patients with
spinal cord injury were impacted by psychosocial burden as no participant was
found without psychosocial burden. Based
on these evidences,there is a need for the appropriate interventions and
policies to minimize the psychosocial burden on family members which will lead
to improvedhealth outcomes for patients.
Keywords:
Spinal cord injury, Spinal cord injury survivors, Psychosocial burden, Family
caregivers, Zaritburden interview
INTRODUCTION
Spinal Cord Injury is widelyconsideredtransformative,
complex and turning point both for patients and their families. Multiple
factors contribute to maintain healthy life of the patient which may
includepatients physical health, the level of psychological effects on the
patient and the contribution of family and friends.1 Consequently,
every chronic disorder impact the lifestyle of an individual as well as the
whole family. Additionally, the spinal cord injury is an event that impairs the
physical mobility of the patients. Moreover, the patients incline to depend on
others, especially theirimmediate family members.2 The dependency
may be merely limited to physical mobility or may lead to the influential
activity of daily living like household finances and shopping.3
Generally, when spinal cord injury
occurs, one member of the family takes up the responsibility of patients carewhich
ultimately lead to the harmfulrepercussions on the physical, emotional and
psychological well-being.4,5 Further studies suggest that the myriad
of problems arises from the inability to balance the responsibility of care
with other tasks such as activities of job and household.6 As a
result of this imbalance, they begin to ignore their health and ultimately lead
to miserable condition of the patients health.7 The problem
confronted with the caregivers is attracting a substantial attention among the researchers
in the present time.8 Presently, the patients with spinal cord
injury enjoy productive lives as compared to past in high income countries.9Comparatively,
the situation is still worse and patients and their families are still
suffering in middle andlow income countries.10 Accordingly, the
availability of quality helping maneuvers such as wheel chairs, medical and
restoration services are excessively inadequate in these countries.
Consequently, the activities of patients and their families especially the
caregivers are limited to participate in the public and private lives.11There
is a huge number of morbidities and mortalities on account of spinal cord injuries
and the survivors mostly had to live with lifetime dependency. Worldwide 90
million people are living with spinal cord injury and the incidence ranges
between 1 to 5 persons per 100,000 in the middle and low income countries.12Mortality
among high income countries ranges from 3.1% to 22.2%, while in middle and low
income countries it varies from 1.4% to 20.0%.13
In Pakistan, there is lack of proper
reporting of incidence mainly due to the scarce resources and limited research.
Therefore, the researchers had suggested a dire need for spinal cord registry
in Pakistan.14The findings of the study may provide credible
evidence for the policy makers, hospital management and healthcare workers to
plan appropriate interventions for the patients suffering from spinal cord
injuries and their families thereafter.
METHODS
An analytical cross-sectional study was
conducted at Paraplegic Center Hayatabad Peshawar Pakistan from May 2018 to
August 2019.
Research board (ASRB) of Khyber Medical
University had approved the study formally (DIR/KMU-AS&RB/PB/000926). Moreover,
signed informed consent was also obtained from all study participants prior to inclusion
in the study.
All the caregivers of eighteen years
and aboveand accompanying the patientsduring data collection time, were
included in the study by using the census method. The participants suffering
from chronic illnesses and with history of psychiatric disorders were excluded.
The total sample in the study consisted of 105 participants, with 100% response
rate.
An adapted self-administered
questionnaire was used for data collection.15 The questionnaire of
Zerit Burden Interview (ZBI-22) consisted of 22 questions regarding
psychosocial burden of caregivers. The questionnaire tool assesses the
psychosocial burden in the form of feeling strained and stressful, embarrassed,
angry, privacy deprivation, inadequate friends, financial constraints, loss of
control over life and being unsuccessful in providing care to the patient. Each
question had 5 options of likert scale. The internal consistency (Cronbach's
alpha) of the questionnaire has been reported to be 0.92.1 The
grading marks on ZBI ranges from 0 to 88. On the scale from 0 to 20 is
considered no impact, 21 to 40 mild, 41 to 60 moderate and 60 to 88 is severe
impact on the caregivers. Data were collected in the Paraplegic Center Peshawar
from the caregivers of patients by the principal investigator, using Urdu
version of the questionnaire.
SPSS 22 version was used for the
purpose of data analysis. Mean and standard deviation was calculated for age,whereas
frequencies and percentages were calculated for the categorical variables like gender,
employment, education and the responses of the participants. Chi-squared test
was applied to see association between the demographic characteristics and the
psychosocial burden. P-value <0.05 taken as significant.
RESULTS
The
sample consisted of 105 participants, majority 72 (68.57%) were males and 33
(31.43%) were females. Most of the individuals had less than or equal to matric
educational status 59 (56.19%), followed by intermediate or greater in 29
(76.19%) and illiterate were 17 (16.19%). There were 80 (76.19%) who were
unemployed, 67 (63.81%) married, whereas only 35 (33.33%) individuals were caring
patients for more than 2 months. (Table 1)
The
relationship of the caregivers with the patients showed that majority of the
caregivers had no first blood relationship 80 (76.19%), 9 (8.57%) were mothers,
8 (7.62%) were fathers, 7 (6.67%) were children, while only 1 (0.95%) was
spouse.
The
psychosocial burden showed that 39 (37.14%) individuals had mild, 58 (55.23%)
had moderate and 8 (7.62%) had severe psychosocial burden. The comparison of psychosocial
burden with respect to general characteristics showed that moderate psychosocial
burden was found to be higher in females (23/33, 69.6%), individuals with ≤matric
educational status (36/59, 61%), unemployed individuals (48/80, 60%), married
(38/67, 56.7%), and having duration of care >2 months (22/35, 62.9%). (Table
2)
To
see the association of psychosocial burden with general characteristics,
moderate and severe psychosocial burden were merged in order to minimize
differences in extreme responses because there were only 8 participants with
severe psychosocial burden. In total, 66 (62.85%) individuals had moderate and
severe psychosocial burden. A significant association of psychosocial burden
was observed with gender (p-value 0.022) and employment (p-value 0.025). (Table
3)
|
Table 3: Association of psychosocial burden
with demographic characteristics (n=105) |
|||
|
Variables |
Psychosocial Burden |
p-value |
|
|
Mild (n=39) |
Moderate/Severe (n=66) |
||
|
Gender |
|
|
0.022* |
|
Male |
32 (44.4) |
40 (55.6) |
|
|
Female |
7 (21.2) |
26 (78.8) |
|
|
Education |
|
|
0.336 |
|
Illiterate |
6 (35.3) |
11 (64.7) |
|
|
≤matric |
19 (32.2) |
40 (67.8) |
|
|
≥Intermediate
|
14 (48.2) |
15 (50) |
|
|
Employment |
|
|
0.025* |
|
Employed |
14 (56) |
11 (44) |
|
|
Unemployed |
25 (31.3) |
55 (68.8) |
|
|
Residence |
|
|
0.451 |
|
Urban |
7 (30.4) |
16 (69.6) |
|
|
Rural |
32 (39) |
50 (61) |
|
|
Marital Status |
|
|
0.710 |
|
Single |
15 (39.5) |
23 (60.5) |
|
|
Married
|
24 (35.8) |
43 (64.2) |
|
|
Care Duration |
|
|
0.199 |
|
2
months |
29 (41.4) |
41 (58.6) |
|
|
>2
months |
10 (28.6) |
25 (71.4) |
|
|
Chi-Square test applied, *p-value˂0.05 |
|||
DISCUSSION
The objective of the study was to
identify the levels of psychosocial burden on the caregivers of patients with
the spinal cord injuries. The finding of the current study revealed that
caregivers are considerably affected by psychosocial burden on account of care
of the spinal cord injury patients. The mean age of the participants was 31.39+-12.02
years which is not in line with the findings of previous literature of 53.02+-14.62
years.16The discrepancy might arise from difference in the
responsibilities of the young population in our country as compared to the rest
of the world. Unemployment may be attributed to play a role in the discrepancy
because they are easily available to care for the patients. Of the total sample
of 105, 68.6% (n=77) comprised of male whereas previous findings indicated that
71% consisted of female.17 Another study reported that 54% were male
and 64% were female.18 Cultural norms and traditions may be
responsible for the large number of male in the current study. The people of
the area do not allow female outside houses in male wards.
A study in the United States indicated
that 72% of the population weregraduates.15The findings of another
study showed that 16% were illiterates, 49% were primary educated, secondary
school were 24% and university degree holders were 10%.19 The major
reason for the difference of education is the literacy rate of countries in
which the studies were carried out. Of the participants of the current study,
23.8% were employed while 76.2% were unemployed. No retired participants were
identified in the study. The current findings were different from the previous
study which identified that 58% of the participants were employed.15One
of the studies had identified similar results which showed that 70% of the
participants were unemployed.20 The discrepancy in the findings can
be solely linked to the developmental status of various countries.
The current study identified that two
months duration of care was reported in 66.7% of individuals, 2 to 6 months in
22.9% of participants, 7 months to 1 year in 3.8% of caregivers and one year
and more was revealed in 6.7% of caregivers. This is consistent with what has
been found in the previous literature as 64% of participants were involved in
patients care currently, while 36% of caregivers were providing care for the
last five years.15 The findings in the current study showed that
spouses were 1%, children were 6.7%, mothers were 8.6%, fathers were 7.6% and
significant others were 76.2% included siblings, cousins, uncles and
grandfathers. A study conducted in Turkey found different relationship among
caregivers and patients as 26% were mothers, 60% were fathers, 33% were
spouses, 28% were siblings and others (adult child, niece and aunt) were 7%.18
The findings of the study revealed that
all of the participants were broadly impacted by the psychosocial burden of
care. No one of the participants was found with little psychosocial burden. Of
the participants, 37% were suffering from mild burden, 55% were experiencing
moderateand 8% reported severe psychosocial burden. The previous literature
revealed that 40% of the participants had high burden.20The
dissimilarity can be attributed to the fact of selection of small sample size
of 67 participants and differences in cultures as nuclear family exists in Netherland
where one member takes up responsibility of patient care along with other
household tasks. Moreover, the sample was chosen from the participants who were
providing care for the last five years, therefore this fact can be attributed
to cause heavy burden in the caregivers.
A study was conducted in Pakistan on
caregivers of patients on dialysis, identified little or no burden in 20% of
caregivers, mild to moderate burden was identified in 65% of individuals,
moderate to severe burden was reported in 13% participants and severe level of
burden was revealed in 2% of the caregivers.22The study was conducted
in the same social contexts where the joint family system prevail and the care
of patient is considered religious responsibility, therefore the burden of care
is relatively low and the findings are in agreement with the current study.
Incongruent pattern of results were
obtained from the previous study which showed that 88% of caregivers had
moderate to severe psychosocial burden and 11% were suffering from mild burden.23
The discrepancy of the results can be due to the fact that majority of the patients
with spinal injury survivors were male who were breadwinners besides they had to
pay heavy taxes and other household expenses. In another study, there was 47.42+-11.91
mean score of burden. Additionally, no association was obtained with
demographic characteristics.15The findings are broadly in line with
the results of the current study. The literature has also identified that the
age of caregivers, education level, marital status, household responsibilities,
health problems and dependency level of the patients were noteworthy factors to
affect the level of burden.24 In Brazil, a study on the caregivers
of neurological patients indicated that 58.09% participants reported mild to
moderate burden, 22.70% had no burden and 19.12% had moderate to severe burden.25The
study also identified that demographic characteristics affected the level of
burden including female caregivers, educational level and advance age. The
current study also revealed that female gender and the status of unemployment
affect the level of psychosocial burden (p-value, 0.022, p-value 0.025
respectively). The female perform caring of children, employment and other
activities of household, therefore there is an extra burden on the female
caregivers.A study conducted in India revealed that 63.0% of the participants
had mild to moderate, 7% were moderate to severely and 2% were severely
overburdened.26 The caregivers in India share similar
responsibilities as in our country, therefore basic findings are alike in both
studies.
The study is limited in terms of
selection of small sample size which may affect the generalizability of the
findings. The study could have been extended in duration for data collection
which would involve large number of participants in the study.
CONCLUSION
The findings of the study contributed
reliable evidences that family caregivers of spinal cord injury patients are markedly
challenged by mild, moderate and severe level of psychosocial burden.Moreover
the female gender and unemployed caregivers were more prone to psychosocial
burden. This fact calls for proper interventions for the caregiver on the part
of policy makers, hospital management and health care workers.
ETHICAL APPROVAL: This study was approved by Khyber
Medical University Advance Study & Research Board prior to initiation of
the research work.
CONFLICT
OF INTEREST:None
FUNDING:None
AUTHORS
CONTRIBUTION: HB and SA substantially contributed to
the conception and design of the study. HB and AK worked in the acquisition and
analysis of the data. SA and DM interpreted the data. HB and AK drafted the
manuscript and revised it critically for intellectual contents. SA and DM gave
the final approval of the manuscript.
Received:
January 07, 2020
Accepted:
April 14, 2020
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