Keywords
SCI - home care guidelines - caregiver
Introduction
A spinal cord injury (SCI) refers to any injury to the spinal cord that is caused
by trauma instead of disease. It is a serious condition resulting in severe disability
or death, with survivor facing myriad of health problems and multiple complications
affecting their day-to-day living. There is no definite treatment for SCI, but one
can prevent further damage to the cord with medical and surgical treatment. The rehabilitation
process following an SCI typically begins in the acute care settings to make the patient's
life easy and to prevent complications.[1] Patients with SCI usually require long-term care. With a huge population overcrowding
the hospitals, it becomes necessary to discharge these patients to accommodate the
other patients who need emergency care. Otherwise also, shorter stay of the patient
in the hospital is preferred. With this changing climate of health care delivery system,
a large number of clients return to their homes quicker, however, they may be too
sick to be looked after in the home settings. So, they are left to the care by their
family members. The family/caregiver may not have acquired an adequate knowledge of
how to give care at home. They are not just concerned with activities of daily living,
such as bathing, dressing, eating, but also in many other health care matters such
as prevention of contractures and pressure sore, bladder, and bowel management.[2]
A prospective cohort study conducted in Australia revealed that the incidence of contracture
in major joints 1 year after SCI ranges from 11 to 43%. The ankle, wrist, and shoulder
are most commonly affected joints. Although contracture development is preventable
still incidence of occurrence of contractures is quite high.[3] Another study conducted in 1990 by Kwiczala et al also revealed that families and
caregivers of bedridden patients have insufficient knowledge of pressure ulcer prevention.
Contribution of medical staff in education of families of patients at risk in pressure
ulcer prevention is minimal, indicating the need of preparation and implementation
of an educational program for bedridden patients' caregivers.[4] In 2010, a study was conducted which revealed that the urinary complications remain
the leading cause of morbidity and one of the cause for urinary complications is the
lack of guidelines for bladder management.[5] Another study found that caregivers who provide care to people with SCI are struggling
to provide quality care to improve their patients' lives in the absence of good evidence
to guide their treatment decisions.[6] A recent study performed at Postgraduate Institute of Medical Education & Research,
Chandigarh, India, in 2011 on 19 patients found that major complications faced by
patients with SCI after discharge from hospital were bedsores (52.6%) followed by
bowel and bladder dysfunction (47.4%) and urinary tract infection (42.1%). Study concluded
that there is a need for intensive public education regarding SCI, its complications,
their prevention, and care.[7] Experience suggested that to ensure the safest care for the patient at all times
and to provide quality care at home, teaching and instructions should be given to
caregivers regarding various care modalities and procedures. With this background,
a methodological study was conducted with the objective to develop the home care guidelines
for the caregivers of the patients being discharged with SCI. Home care guidelines
are the comprehensive list of the important and relevant actions or steps which are
to be performed in a specific manner. The home care guidelines are meant to assist
caregivers in providing adequate, safe, and efficient care to their patients in the
home setting, to improve patient's quality of life, and to prevent complications.
Patients and Methods
A methodological research approach was adopted to develop the home care guidelines
for caregivers of patients being discharged with SCI. The study was performed in Neurosurgical
and Orthopaedic units of Nehru Hospital, Chandigarh, India. Ethical approval for the
study was obtained from the Institute Ethical Committee of PGIMER, Chandigarh, India.
The study was conducted in five phases.
Phase I: Preparation preliminary draft of the home care guidelines: it was divided
into the following two steps: in the first step, an exhaustive literature review was
done to collect recent evidences related to home care of patient with SCI and the
role of family members in the care of the patient. Further, a rigorous review of literature
related to the prevention of complications in the patients with SCI was done. Sources
of literature included both electronic databases (PubMed, Medline, and CINHAL), as
well as printed material (books and journals). In the second step, various protocols
and tools were analyzed and items related to home care were pooled together. Selected
items were organized to generate first draft of home care guidelines. Items were categorized
under eight domains (personal hygiene, care of the bowel, care of the bladder, bedsore
prevention, pressure sore dressing, range of motion exercises, changing position of
patient, and incentive spirometry).
Phase II: The face and content validity of the home care guidelines was done with
the Delphi technique. For the procedure of the Delphi technique, a panel of experts
consisting of 11 members from field of nursing (medical–surgical nursing and community
health nursing) and department of neurosurgery was formulated. The sample of panelists
was heterogeneous to ensure that entire spectrum of opinion could be determined. These
all panelists were experts in their field and interested to engage in the whole process
of this research study. The written consent was taken from all the selected experts
to participate in study. Then, first draft of home care guidelines was circulated
among the selected panel of experts and they were requested to give their valuable
suggestions pertaining to content for its relevance, clarity, language, organization,
level of understanding, accuracy of information, item order, that is, organization
and sequence of the items and wording of items. The process was continued until there
was a common consensus among the panel of experts. Four Delphi rounds were done to
obtain the consensus, as per expert's opinion modifications in home care guidelines
were made. The fourth draft of guidelines had seven domains regarding care of the
patient at home with exclusion of one domain, that is, wound dressing. An observational
checklist consisting of 125 items was prepared from the fourth draft of guidelines
to compute reliability of these guidelines. One score was given for each correct and
zero score for each incorrect or missing step.
Phase III: A pilot study was conducted on five caregivers in Neurosurgical and Orthopaedics
units of Nehru Hospital, Postgraduate Institute of Medical Education & Research, Chandigarh,
India, to assess the feasibility and practicability of home care guidelines and to
pretest the home care guidelines for language clarity, appropriateness, and sequence
of items. Caregivers of those patients who had paraplegia or quadriplegia after SCI
were included in study. Caregivers of the patients who had injury above C4 (vertebrae) level were excluded. Purpose of the study was explained to the caregivers
and a written consent was obtained. Caregivers were taught as per developed guidelines.
Individualized demonstrations on two domains were given to the caregivers in a day.
Return demonstrations of the same domains were taken from the caregivers on the next
day before demonstrating the next two domains/procedures. Researcher took 5 days to
demonstrate all the domains to the caregiver of one patient. Guidelines were found
to be feasible. Guidelines were easy to understand and implement. The language of
the guidelines was clear, appropriate and items were organized in a sequence. The
average time taken to teach the guidelines and to observe the developed skills of
the caregivers was 25 to 30 minutes per day for 4 days. So, it was feasible to train
the caregivers of patients as per developed home care guidelines. No further modifications
were required. The draft 4 of home care guidelines was considered as final draft.
Phase IV: The reliability of developed home care guidelines was tested in phase IV.
It included implementation of the home care guidelines and reliability of the guidelines
that was checked by using Cronbach α. For this, 30 caregivers were taught as per developed
guidelines and they were observed while caring for their patient by checklist. Purpose
of the study was explained to the caregivers, and written consent was obtained from
them. Home care guidelines consisted of seven domains of care, that is, personal hygiene,
bladder care, bowel care, bedsore prevention, changing position of patient, prevention
of contractures, and incentive spirometry. Individualized demonstrations on two domains
were given to the caregivers in a day. Return demonstrations of the same domains were
taken from caregivers on next day before demonstrating the next two domains/procedures.
Researcher took 5 days to demonstrate all the domains to the caregiver of one patient.
Phase V: Home care guidelines were developed in the form of booklet in two languages
English and Hindi.
Results
The data were analyzed by SPPS (version 16). The Cronbach α was used to find out internal
consistency reliability of present checklist prepared from final draft of home care
guidelines. The sample size for analysis was 30. There were total 125 items in the
checklist, and the overall Cronbach α coefficient of the developed checklist was 0.91,
which indicates the reliability and internal consistency of checklist (ideally Cronbach
α coefficient should be 0.7 or more than 0.70). Corrected item to total score correlation
was applied on all 125 items of the checklist, 120 items in the checklist had an item
score to total score correlation between 0.1 and 0.9 ([Tables 1]
[2]
[3]
[4]
[5]
[6]
[7]
[8]
[9]
[10]
[11]
[12]), whereas 5 items in the scale had an item to total score correlation less than
0.1 showing incompatibility with the overall checklist.
Table 1
Reliability analysis of items of checklist of personal hygiene
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item total correlation
|
Cronbach α if item deleted
|
|
Gives bed bath daily
|
148.40
|
0.141
|
0.910
|
|
Gives eye care 2 times a day
|
148.40
|
0.186
|
0.910
|
|
Gives oral care daily
|
148.43
|
0.137
|
0.910
|
|
Maintains perineal hygiene
|
148.23
|
0.194
|
0.910
|
|
Gives hair care as per need
|
148.26
|
0.154
|
0.910
|
|
Gives hand and feet care as per need
|
148.33
|
0.119
|
0.910
|
Notes: overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
Table 2
Reliability analysis of items of checklist of the bladder care
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item total correlation
|
Cronbach α if item deleted
|
|
Collects equipments
|
148.33
|
0.166
|
0.910
|
|
Cleans the genital area
|
148.26
|
0.133
|
0.910
|
|
Takes catheter and wipes it up to 25 cm first with soap and wet swabs
|
148.26
|
0.270
|
0.910
|
|
Applies jelly to catheter tip up to 15–25 cm
|
148.50
|
0.228
|
0.910
|
|
Immerses other end of catheter in receptacle
|
148.26
|
0.118
|
0.910
|
|
Holds penis at right angle to body/separates vulva with one hand
|
148.40
|
0.147
|
0.910
|
|
Inserts lubricated catheter slowly in urethra
|
148.43
|
0.030[a]
|
0.910
|
|
Asks the patient to take deep breaths and advances the catheter
|
148.23
|
0.881
|
0.906
|
|
Stops when urine begins to drain
|
148.50
|
0.199
|
0.910
|
|
Allows urine to drain in the receptacle
|
148.43
|
0.186
|
0.910
|
|
Pinches the catheter and removes it slowly
|
148.46
|
0.003[a]
|
0.910
|
|
Washes it with soap and water, hangs to dry it
|
148.33
|
0.792
|
0.907
|
|
Discards urine after measuring and observing it
|
148.30
|
0.718
|
0.907
|
|
Washes hands
|
148.30
|
0.939
|
0.906
|
a Items in checklist which shows item to total correlation < 0.2.
Notes: overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
Table 3
Reliability analysis of items of checklist of the bowel care
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
Collect equipments
|
148.30
|
0.939
|
0.906
|
|
Washes hands
|
148.33
|
0.792
|
0.907
|
|
Provides privacy
|
148.33
|
0.792
|
0.907
|
|
Positions patient on side
|
148.30
|
0.939
|
0.906
|
|
Places plastic sheet under buttocks
|
148.33
|
0.792
|
0.907
|
|
Wears gloves
|
148.30
|
0.939
|
0.906
|
|
Lubricates index finger with jelly
|
148.33
|
0.792
|
0.907
|
|
Inserts finger into rectum slowly
|
148.30
|
0.939
|
0.906
|
|
Loosens the fecal mass by massaging around it
|
148.30
|
0.939
|
0.906
|
|
Brings fecal mass downward to the end of the rectum
|
148.30
|
0.939
|
0.906
|
|
Allows the patient to rest in between
|
148.33
|
0.792
|
0.907
|
|
Removes small sections of feces at a time and collect in bedpan
|
148.30
|
0.939
|
0.906
|
|
Washes the anal area and buttocks
|
148.30
|
0.939
|
0.906
|
Notes: overall scale mean is 148.38; overall reliability of the checklist is 0.91
(Cronbach α).
Table 4
Reliability analysis of items of checklist on prevention of the bedsore
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
Keeps bedsheet wrinkle free
|
148.33
|
0.881
|
0.906
|
|
Keeps bedsheet dry
|
148.43
|
0.590
|
0.908
|
|
Changes the position of the patient every 2 h
|
148.43
|
0.333
|
0.909
|
|
Uses comfort devices for the patient
|
148.46
|
0.477
|
0.909
|
|
Cleans back from sacrum toward shoulder in circular motions two times a day
|
148.36
|
0.591
|
0.908
|
Notes: overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
Table 5
Reliability analysis of items of checklist for moving the patient up in bed toward
head end
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
Makes the bed flat
|
148.33
|
0.264
|
0.910
|
|
Removes the pillow from under the head
|
148.36
|
0.480
|
0.909
|
|
2–3 caregivers stand on the right side of bed
|
148.33
|
0.379
|
0.909
|
|
First caregiver assumes the responsibility for supporting the head, shoulder, and
chest
|
148.40
|
0.179
|
0.910
|
|
Second caregiver supports the hips
|
148.46
|
0.152
|
0.910
|
|
Third caregiver holds the knees from underside
|
148.40
|
0.113
|
0.910
|
|
One caregiver gives the signal by counting 1, 2, 3
|
148.30
|
0.606
|
0.908
|
|
All the caregivers move the patient up and toward the center of bed at the count of
3
|
148.30
|
.606
|
0.908
|
|
Desired position is given to the patient
|
148.40
|
0.681
|
0.908
|
|
Places the pillows under the head of the patient or wherever desired
|
148.30
|
0.939
|
0.906
|
Notes: overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
Table 6
Reliability analysis of items of checklist for moving the patient up in bed with bedsheet
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
Places the sheet under the patient extending from shoulder to thigh
|
148.36
|
0.325
|
0.910
|
|
Two caregivers stand on each side of bed
|
148.43
|
0.269
|
0.910
|
|
Grasps the sheet firmly near the patient
|
148.43
|
0.272
|
0.910
|
|
Pulls the sheet along with the patient till desired position is reached
|
148.46
|
0.252
|
0.910
|
|
Makes the patient comfortable
|
148.33
|
0.264
|
0.910
|
Notes: overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
Table 7
Reliability analysis of items of checklist for moving the patient from back to side-lying
position
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
Brings patient toward the right side of bed
|
148.30
|
0.522
|
0.908
|
|
Keeps the arm of the patient away from caregiver along the side of head, face and
arm
|
148.36
|
0.714
|
0.907
|
|
Keeps the arm which is near to the caregiver, across the chest of the patient
|
148.46
|
0.263
|
0.910
|
|
Flexs near leg over the farthest leg of patient
|
148.46
|
0.271
|
0.910
|
|
Places his/her arms under the shoulder, hips
|
148.33
|
0.385
|
0.909
|
|
Rolls the patient gently away from self to put him/her in side-lying position
|
148.43
|
0.023[a]
|
0.910
|
|
Places one pillow in between knees, under the back, arm head
|
148.30
|
0.428
|
0.909
|
|
Makes the patient comfortable
|
148.50
|
0.181
|
0.910
|
a Items in checklist which shows item to total correlation < 0.2.
Notes: Overall scale mean is 148.38. Overall reliability of the checklist is 0.91
(Cronbach α).
Table 8
Reliability analysis of items of checklist for moving the patient from bed to trolley
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
2–3 caregivers stand on the same side of the bed to which they want to turn the patient
|
148.30
|
0.351
|
0.909
|
|
Places the client's arms across the chest
|
148.46
|
0.239
|
0.910
|
|
Leans onto his/her trunk and flexs his/her hips, knee, and ankles
|
148.33
|
0.863
|
0.906
|
|
All caregivers reach over the patient
|
148.30
|
0.939
|
0.906
|
|
First caregiver assumes the responsibility for supporting the shoulders
|
148.50
|
0.142
|
0.910
|
|
Second caregiver supports the hips
|
148.43
|
0.144
|
0.910
|
|
Third caregiver holds the knees of patient
|
148.40
|
0.189
|
0.910
|
|
All the caregivers roll the patient to lateral position at the count of 3
|
148.36
|
0.554
|
0.908
|
|
Supports the patient's head, back, and upper and lower extremities with pillows
|
148.33
|
0.173
|
0.910
|
|
Makes the patient comfortable
|
148.33
|
0.236
|
0.910
|
Notes: Overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
Table 9
Reliability analysis of items of checklist for exercises of the shoulder, elbow, and
forearm
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
Makes the patient comfortable in bed
|
148.433
|
0.290
|
0.910
|
|
Raises the right arm above the head up to maximum possible height and then brings
it back (sitting position)
|
148.36
|
0.268
|
0.910
|
|
Raises the right arm to the side of the body and then above the head with palm away
from the head and brings the arm back
|
148.33
|
0.333
|
0.909
|
|
Moves the right arm in full circle vertically
|
148.36
|
0.190
|
0.910
|
|
Brings the shoulder toward the body
|
148.43
|
0.234
|
0.910
|
|
Take the shoulder away from the body
|
148.46
|
0.198
|
0.910
|
|
Performs all exercises on left side of body
|
148.33
|
0.037
|
0.910
|
|
Bends the elbows and moves the lower arm toward its shoulder joint
|
148.36
|
0.365
|
0.909
|
|
Straightens the elbow by lowering the lower arm again
|
148.40
|
0.303
|
0.910
|
|
Performs all exercises on other side of body
|
148.33
|
0.179
|
0.910
|
|
Keeps elbow along the side of the body and lower arm at 90 degree to the elbow in
horizontal position
|
148.46
|
0.153
|
0.910
|
|
Rotates the forearm so that the palm now faces down units
|
148.30
|
0.127
|
0.910
|
|
Performs same exercises on the other arm
|
148.46
|
0.232
|
0.910
|
Notes: Overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
Table 10
Reliability analysis of items of checklist for exercises of the wrist, fingers, and
thumb
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
Straightens the wrist. Palm should be facing down units
|
148.26
|
0.107
|
0.910
|
|
Bends the wrist upward and backward
|
148.26
|
0.034
|
0.910
|
|
Bends the wrist forward and downward
|
148.33
|
0.162
|
0.910
|
|
Twists wrist to the right and then to left
|
148.26
|
0.186
|
0.910
|
|
Repeat same exercises on other hand
|
148.46
|
0.224
|
0.910
|
|
Makes a fist and tightens the fist
|
148.50
|
0.114
|
0.910
|
|
Relaxes and opens the fist
|
148.40
|
0.083[a]
|
0.910
|
|
Straightens and stretches the fist
|
148.400
|
0.096
|
0.910
|
|
Bends fingers back toward the arm as far as possible
|
148.36
|
0.007[a]
|
0.910
|
|
Spreads fingers apart and brings fingers together
|
148.36
|
0.094
|
0.910
|
|
Places squeezing ball in hand and presses it
|
148.33
|
0.259
|
0.910
|
|
Performs all exercises on other hand
|
148.33
|
0.190
|
0.910
|
|
Bends the thumb toward the center of the palm and then back to its original position
|
148.40
|
0.121
|
0.906
|
|
Touches thumb to each finger of same hand
|
148.33
|
0.173
|
0.910
|
|
Extends thumb laterally away from the index finger
|
148.43
|
0.193
|
0.910
|
|
Moves thumb back toward hand
|
148.40
|
0.276
|
0.906
|
|
Repeats exercises on the other hand
|
148.26
|
0.175
|
0.910
|
a Items in checklist which shows item to total correlation < 0.2.
Notes: Overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
Table 11
Reliability analysis of items of checklist for exercises of the leg, knee, ankle,
and toes
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
Moves the straighten leg up as far as possible and bring it down
|
148.43
|
0.112
|
0.909
|
|
Moves the straighten leg away from the body laterally as far as possible and then
back toward the midline
|
148.26
|
0.129
|
0.910
|
|
Turns the leg toward the other leg and then back
|
148.30
|
0.231
|
0.907
|
|
Repeats all the exercises on the other leg
|
148.36
|
0.115
|
0.910
|
|
Makes the patient to lie in bed comfortably
|
148.26
|
0.139
|
0.910
|
|
Bends the knee and then straighten it again
|
148.33
|
0.100
|
0.910
|
|
Repeats on the other knee
|
148.50
|
0.246
|
0.906
|
|
Moves foot so that toes are pointed upunits
|
148.50
|
0.176
|
0.910
|
|
Moves foot so that toes are pointed downward
|
148.36
|
0.164
|
0.910
|
|
Turns the ankles to the left and then right
|
148.46
|
0.136
|
0.910
|
|
Repeats all these exercises on other side
|
148.26
|
0.118
|
0.910
|
|
Spreads toes apart
|
148.50
|
0.190
|
0.909
|
|
Curls toes downward
|
148.33
|
0.179
|
0.906
|
|
Straightens toes and brings toes together again
|
148.30
|
0.192
|
0.910
|
|
Performs all exercises on other toe
|
148.50
|
0.209
|
0.910
|
Notes: Overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
Table 12
Reliability analysis of items of checklist for incentive spirometry
|
Item of checklist
|
Scale mean if item deleted
|
Corrected item-total correlation
|
Cronbach α if item deleted
|
|
Gives sitting position (paraplegic patient) or raise the head end of bed with help
of pillows (quadriplegia)
|
148.50
|
0.133
|
0.910
|
|
Asks the patient to hold spirometer in an upright position (paraplegic patients) or
holds spirometer in his/her hands (quadriplegic patients)
|
148.50
|
0.228
|
0.910
|
|
Asks the patient to place the mouthpiece in his/her mouth and seal his/her lips tightly
around it
|
148.33
|
0.150
|
0.910
|
|
Asks the patient to breath slowly and as deeply as possible
|
148.33
|
0.166
|
0.910
|
|
Asks the patient to raise the ball toward the top of the column
|
148.40
|
0.263
|
0.910
|
|
Asks the patient to hold his/her breath as long as possible
|
148.36
|
0.184
|
0.910
|
|
Asks the patient to allow the ball to fall to the bottom of the column
|
148.40
|
0.164
|
0.910
|
|
Asks the patient to rest for a few seconds
|
148.33
|
0.396
|
0.909
|
|
Asks the patient to repeat same for at least 10 times every hour when he/she is awake
|
148.43
|
0.193
|
0.911
|
Notes: Overall scale mean is 148.38; Overall reliability of the checklist is 0.91
(Cronbach α).
To check the individual contribution of items, each item was deleted one by one to
see the changes in the value of Cronbach α coefficient. But none of the items showed
any increase in value of Cronbach α. Rather, the value of Cronbach α coefficient remained
same or it decreased. This indicates all items contributed to tool. Even on deleting
certain items, having item to total correlation less than 0.1, the value of Cronbach
α did not increase. Hence, these five items also contributed to the reliability of
the checklist. The average scale mean was 148.38. When scale mean if item deleted
was applied on 125 items of checklist, the scale mean if item is deleted was in the
range of 148.23 to 148.50 and none of the item had shown an increase in the value
of average scale mean rather it remained same or it decreased. It means checklist
is internally consistent by taking all the 125 items.
Discussion
This methodological study was planned with the objective to develop the home care
guidelines for the caregivers of patients being discharged with SCI in selected units
of Nehru Hospital, Postgraduate Institute of Medical Education & Research, Chandigarh,
India. Home care guidelines are the comprehensive list of the important and relevant
actions or steps which are to be performed in a specific manner. The home care guidelines
are required to ensure that quality care is being provided to patients in the home
setting, and to prevent complications.
Developing countries such as India do not have good number of rehabilitation centers
which are necessary for patients with SCI. Moreover, available health facilities are
too expensive that everyone cannot afford them. Caregivers do not have adequate knowledge
to care for their patient at home. Hence, the researcher through this study attempted
to devise home care guidelines to ensure that caregivers have sufficient knowledge
and skills to care for their patient in home settings that required to improve quality
of patient care and to prevent complications.
Studies revealed that complications in patients were less in those to whom teaching
was given on clean intermittent catheterization, bowel program, position the patient
correctly and to eliminate pressure in the injured area, inspection of the skin, and
hygiene.[8]
[9] So, in this study, the researcher focused her research around the care of a bedridden
patient and developed the “home care guidelines for the caregivers of the patients
being discharged with spinal cord injury.”
In this study, “home care guidelines for the caregivers of the patients being discharged
with spinal cord injury” were developed in five phases. Phase I was preliminary preparation
of the “Homecare guidelines.” In phase II, the content and face validity was done
with the Delphi technique. Delphi technique has also been used by Kirkwood et al[10] to determine nursing research priorities in the North Glasgow University Hospitals.
They found that three Delphi rounds were sufficient to reach consensus. In this study,
modifications were made after three Delphi rounds, although fourth round was also
taken to reach the final consensus. As there was common consensus among panelists,
therefore no further modifications were required to finalize draft of “home care guidelines
for the caregivers of the patients being discharged with spinal cord injury.”
In phase III, feasibility was checked by conducting a pilot study. The pilot study
was conducted in the wards of orthopedic and neurosurgical departments. In phase IV,
the internal consistency (reliability) of the “home care guidelines” was checked by
Cronbach α by using SPSS version 16. The Cronbach α coefficient value of the checklist
prepared from developed home care guidelines was established at 0.91, providing the
reliability of home care guidelines. In a similar methodological study by Kausal et
al[11] on, “development of nursing checklist to receive patients in ICU,” the value of
Cronbach α was 0.97.
Katz et al[12] reported similar findings on the internal consistency of “The Dynamic Occupational
Therapy Cognitive Assessment for Children.” The reported Cronbach α was 0.77. Benson
and Koomar[13] also reported almost same findings. They assessed the internal consistency of “gravitational
insecurity” outcome measure. The α of the total test score was 0.71.
Similar findings were reported on the internal consistency of the “audit tool.” An
“audit tool” was developed for auditing the family records in a methodological study.
Internal consistency of the tool was checked with Cronbach α coefficient, and the
value was 0.73 which indicated as the reliability of the tool.[14]
Another study on the “development of birth preparedness tool”[15] reported the similar findings of the Cronbach α coefficient with value of 0.81,
which determined the reliability of the tool.
In the phase V of this study, home care guidelines were developed in the form of booklet
in two languages: English and Hindi.
In this study, valid and reliable home care guidelines were developed for the caregivers
of patients being discharged with SCI. These home care guidelines were developed and
prepared in the form of booklet in two languages: English and Hindi.
Conclusion
The complications that arise once the patient with SCI is discharged from hospital
because of insufficient knowledge of caregiver's presents unique challenges for the
health care professionals. The results indicate that “home care guidelines for the
caregiver of the patients being discharged with SCI” are valid and reliable and can
be applied in daily practice. These guidelines address interventions tailored to enable
caregivers to provide best possible care to their patient at home to prevent the development
of complications.
