NeuroRehabilitation 27 (2010) 83–93 83

DOI 10.3233/NRE-2010-0583
IOS Press

Family needs and psychosocial functioning of

caregivers of individuals with spinal cord
injury from Colombia, South America
Juan Carlos Arango-Lasprilla a,∗ , Silvia Leonor Olivera Plazab , Allison Drewa ,
Jose Libardo Perdomo Romero c, Jose Anselmo Arango Pizarro b , Kathryn Francisb and
Jeffrey Kreutzera
a
Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA, USA
b
Department of Psychology, Surcolombiana University, Neiva, Colombia
c
Universidad Cooperativa de Colombia, Neiva, Colombia

Abstract. Objective: 1) To determine the most frequent needs in a group of family caregivers of individuals with spinal cord injury
in Neiva Colombia; 2) to describe caregivers’ psychosocial functioning; and 3) to examine the relationship between caregiver
needs and caregiver psychosocial functioning.
Design: Cross-sectional.
Participants/Methods: 37 caregivers completed a caregiver needs questionnaire composed of 27 questions (1–5 scale) and 9 sub-
scales (emotional, information, economic, community, and household support, respite, physical health, sleep, and psychological
health). The Patient Health Questionnaire (PHQ-9) was used to measure caregiver depression, the Zarit Burden Interview (ZBI)
measured stress, the Interpersonal Support Evaluation List Short Version (ISEL-12) measured social support, and the Satisfaction
With Life Scale (SWLS) was used to assess satisfaction with life.
Results: Information, economic, emotional, community support, and respite needs were most frequently reported among this
group of Colombian caregivers. Forty-three percent of the family caregivers reported some level of depression, 68% reported
being overwhelmed by their caretaking responsibilities, and 43% reported dissatisfaction with their lives. Information, emotional,
economic, physical, sleep, and psychological needs were positively correlated with depression and burden. Those with more
household, physical, sleep, economic, and psychological needs had less satisfaction with life and social support. Caregivers with
more community and respite needs had less social support, while those with more emotional needs had less satisfaction with life.
Caregivers with more respite needs had more burden and those with more household needs had more depression.
Conclusion: Approximately half of the sample reports some level of burden, depression, or being dissatisfied with life. Psychoso-
cial functioning was related to various family needs. Further longitudinal research is needed to determine whether caregivers
with more needs report worse psychosocial functioning or if those with worse psychosocial functioning report more needs.

Keywords: Spinal cord injuries, caregivers, outcome assessment

1. Introduction

∗ Address for correspondence: Juan Carlos Arango-Lasprilla,
Ph.D., Assistant Professor, Department of Physical Medicine and
Rehabilitation, Virginia Commonwealth University, 730 East Broad
Street, PO Box 843038, 4th Floor, Room 4230a, Richmond, VA
23219, USA. Tel.: +1 804 828 8797; Fax: +1 804 827 0663; E-mail:
jcarangolasp@vcu.edu.
A Spinal Cord Injury (SCI) occurs when vertebrae
within the spinal column are either broken or dislo-
cated often resulting from a sudden, traumatic blow to
the spine [36], or less frequently from, cysts/tumors,
an infection of the spinal nerve cells, an interruption

ISSN 1053-8135/10/$27.50  2010 – IOS Press and the authors. All rights reserved
84 J.C. Arango-Lasprilla et al. / Family needs and psychosocial functioning of caregivers of individuals with SCI
of blood supply to the spinal cord, or congenital med-
ical conditions [50]. There are approximately 12,000
new cases of SCI annually in the United States, with
its prevalence ranging from 227,080 to 300,938 per-
sons [38]. As of 2006, an average of 485 people per
million around the world were living with a spinal cord
injury; 29.5 people per million develop a spinal cord
injury every year worldwide [57]. Some of the leading
causes of SCI include motor vehicle accidents, falls, vi-
olence, and sports mishaps [49], all of which can occur
in the general population. Depending on the location
and completeness of the injury, an SCI may cause mo-
tor and sensory impairments, including weakness, and
paralysis [37].
An SCI may create problems that are physical [54],
psychosocial [34], emotional [60], and economic [16]
in nature, all of which affect both the individual and
his/her families. Many physical complications arise
from an SCI, including: pain, pressure sores, spasticity,
urinary tract infections, and problems with sexual func-
tioning [13,15]. Psychosocial effects include decreased
life satisfaction [4,24], decreased quality of life [27,
28], and increased social isolation [17]. The emotion-
al impact of an SCI may create anxiety [22], depres-
sion [21], alcohol abuse [52], adaptation problems [32],
increased substance abuse [23,58], and changes in a pa-
tient’s perception of their physical and cognitive func-
tion [35]. Finally, economic consequences involve low-
er employment and return-to-work outcomes, as well
as high medical and hospitalization costs [41].
When these problems combine, they can impair a
person’s ability to function independently [54]; as a re-
sult, caregivers play an active role in the recovery of a
person with SCI. Caregiving demands extensive com-
mitment to the additional duties and responsibilities as-
sociated with the role. In fact, Blanes, Carmagnani,
and Ferreira [2] reported that caregivers dedicate 11.3
hours per day on average to caring for an SCI patient,
which does not include normal household responsibil-
ities. Often, families and spouses are called on to as-
sume the role of primary caregiver [40]. Moreover,
families of SCI individuals are usually unprepared to
assume these new time consuming caregiver responsi-
bilities, which often include assisting with daily func-
tions [44]. Taking on this new stressful role of care-
giving, coupled with a lack of training or experience
in the field, can be overwhelming and often leads to
decreased quality of life in family caregivers (strained
relationships, less choice and control, increased stress,
financial difficulties) [3,7,29]. The caregiver’s new re-
sponsibilities may also create feelings of physical and
emotional burden, anxiety/depression, and psycholog-
ical morbidity and distress [3,7,42,48].
Family members and spouses who become care-
givers often experience physical, psychosocial, and
emotional stresses comparable to those of individuals
with SCI [5]. Cleveland [8] found that new tasks as-
sociated with caring for an SCI patient were unevenly
distributed amongst family members, thereby causing
increased stress in communication, family power struc-
ture, family unity, and family interpersonal relation-
ships. Another study assessed the well-being of 121
SCI family caregivers, finding that the risk for probable
depression increased as injury severity increased [11].
Finally, Elliott, Shewchuck, and Richards [14] relat-
ed several SCI family caregiver psychosocial issues to
problem solving abilities, discovering that those with a
negative problem solving orientation were more likely
to experience increased anxiety, depression, and gener-
al health complaints than those with a positive problem
solving orientation in the first year of the caregiving
role.
It is clear that the problems associated with SCI affect
not only the patient, but his/her family as well. The life
changes and burdens on family members who become
caregivers for persons with SCI are tremendous; it is no
surprise, then, that these family caregivers have certain
needs that must be met in order to ensure successful
rehabilitation of the SCI patient. Unfortunately, family
needs in SCI caregivers are relatively unknown, with
more research studies focusing on the needs of the
patient. Despite this, a few studies have successfully
found frequently reported needs of family caregivers.
For instance, an early study by Bamford,Grundy, and
Russell [1] noted family caregivers need help with fi-
nancial issues, adapting their homes for medical equip-
ment, and finding resources to help patients gain em-
ployment. Another early study by Stanton [51] fo-
cused on ten significant others who became primary
caregivers of individuals with SCI. Results emphasized
the importance of psychosocial needs for caregivers,
such as: wanting acceptance by rehabilitation person-
nel, knowing the staff caring for the patient, having
access to communication about the patient’s treatment,
care and progress, and knowing the available resources
within the hospital [51]. Similarly, Hart [18] conducted
a study on seven spouses who became caregivers for
individuals with SCI. Participants reported seven key
needs to aid in the caregiving process, including: feel-
ing adequately informed, feeling helpful to the patient,
feeling able to cope with home and family responsibili-
ties, receiving emotional support, being able to express
 J.C. Arango-Lasprilla et al. / Family needs and psychosocial functioning of caregivers of individuals with SCI 85

Table 1
feelings, feeling that the client is getting good care, and Demographic information of the primary caregivers
help in dealing with the major future effects of patients’ (N = 37)
injury. Age (years)
More recently, a study by Meade et al. [33] focused Mean 44.9 (± 16.4)
on family needs of caregivers during the acute reha- Education (years)
bilitation phase post-SCI. Family members of 17 inpa- Mean 8.4 (± 4.2)
tients were evaluated using the Family Needs Question- Gender
Male 5 (13.5%)
naire (FNQ), which produced information concerning Female 32 (86.5%)
frequently reported needs as well as the extent to which Marital Status
needs were being met. Needs rated with the highest im- Single 8 (18.9%)
Married 17 (45.9%)
portance included: having questions answered honest-
Separated 4 (10.8%)
ly, having complete information on the patient’s physi- Cohabiting 9 (24.3%)
cal problems, having complete information on the med- Relationship to the Patient
ical care of traumatic injuries, and having professionals Brother/Sister 6 (16.2%)
Spouse/Partner 11 (29.7%)
to turn to for advice. Many family caregiver needs were Mother/Father 18 (48.6%)
reported as being met; however, several were marked Other Relative 2 (5.4%)
as being unmet, such as being encouraged to ask others Employment
for help, having enough resources for the patient, being Employed 17 (45.9%)
Unemployed 20 (54.1%)
shown what to do when the patient acts strangely, and Socioeconomic Status
having help with housework. Level 1 8 (21.6%)
Even though there is literature examining family Level 2 24 (64.9%)
needs and psychosocial outcomes in caregivers of in- Level 3 3 (8.1%)
Level 4 2 (5.4%)
dividuals with SCI, most of the studies have focused Hours per Week Providing Care
on North American and Western-European caregivers. Mean 79.9 (± 45.3)
There is a lack of research in these areas in regards to
SCI caregivers from other cultures; given inter-cultural an individual with SCI and who were familiar with the
differences in values and approaches to caregiving, it is patient’s medical and social status. Thirty-seven family
reasonable to think that needs and outcomes may be dif- caregivers were recruited from the Foundation for the
ferent in caregivers from South America. For instance, Integral Development of People with Disabilities (Fun-
outpatient rehabilitation centers are limited in develop- dación para el desarrollo integral de las personas con
ing countries, as is day care for adults, support groups, discapacidad) in Neiva, Colombia. The inclusion and
and respite care. Many caregivers also have limited exclusion criteria were: 1) be the primary caregiver of a
access to information and little knowledge about the patient with SCI, 2) have been providing care to the pa-
resources that exist in their communities. Furthermore, tient for a minimum of six months, and 3) have no per-
even if these resources are available to potentially al- sonal history of neurological and psychiatric disorders
leviate some of the caregiving burden, families usually or learning disabilities.
feel responsible for providing care and may not access Demographic information for the sample is provid-
or use them. The goals of the present study are: 1) to ed in Table 1. The sample of caregivers consisted of
determine the most frequent needs in a group of family 5 men (13.5%) and 32 women (86.5%), with a total
caregivers of individuals with spinal cord injury in Nei- average age of 44.9 years (SD = 16.4) and an average
va, Colombia; 2) to describe caregivers’ psychosocial educational level of 8.4 years (SD = 4.2). Seventeen
functioning; and 3) to examine the relationship between (45.9%) of the caregivers were married. Caregivers
caregiver needs and caregiver psychosocial outcomes. had been providing care to the patient for an average of
79.9 hours/week (SD = 45.3) at the time of entry into
the study. Eleven caregivers were spouses/partners of
2. Methods the patients (29.7%), and 20 (54.1%) caregivers were
unemployed at the time of the interview. Sixty-four
2.1. Participants percent of caregivers were classified as belonging to
socioeconomic status level 2.
For the present study, caregivers were defined as The majority of the patients were male (96.9%).
family members actively providing day-to-day care for Their mean age was 34.6 years (SD = 11.1), their av-
86 J.C. Arango-Lasprilla et al. / Family needs and psychosocial functioning of caregivers of individuals with SCI
erage education was 10.0 years (SD = 4.7), and most
of the patients were single (62.5%). Most of the in-
juries resulted from motor vehicle accidents (34.0%).
Fifty-six percent of the patients had paraplegia. The
mean number of months after the injury was 141.5
(SD = 106.0). Fifty percent of patients were unem-
ployed at the time of the study. Seventy-eight percent
had been re-hospitalized since the time of injury and
the mean number of re-hospitalizations was 4.3 (SD =
4.8). Thirty-one percent of the patients had attempted
suicide. Since the time of injury, 33% of the patients
had received occupational therapy, 78% had received
physical therapy, and 10% had received psychological
therapy.
2.2. Measures
The Caregiver Needs Questionnaire was used to as-
sess family needs in caregivers of individuals with SCI;
four other measures, the Zarit Burden Interview, the Pa-
tient Health Questionnaire, the Satisfaction With Life
Scale, and the Interpersonal Support Evaluation List,
were used to assess caregivers’ psychosocial outcomes.
2.2.1. Caregiver Needs Questionnaire (CNQ)
The CNQ was created for the present investigation
based on three questionnaires that have been used in
previous literature to evaluate the family needs of in-
dividuals with neurotrauma [19,25,45]. This question-
naire was composed of 27 items. Every participant was
asked whether they agreed or disagreed with each of
the questions. The scale for each item had a rank of 1
for “I strongly disagree” up to 5 for “I strongly agree”.
The questionnaire evaluated needs in 9 different cat-
egories: the need to receive emotional support (e.g.,
“I need to discuss my feelings about the patient with
someone who has gone through the same experience”),
the need to receive psychological support (e.g., “I need
to feel good about myself when I provide care”), the
need to receive economic support (e.g., “I need money
to meet my present needs”), the need for rest (e.g., “I
need respite from caregiving”), the need to receive in-
formation (e.g., “I need specialized information about
organizations, associations, and/or support groups that
help or support individuals with SCI and their fami-
lies”), the need to improve their own physical health
(e.g., “I need to be able to take care of myself”), the
need to receive support from the community (e.g., “I
need to receive help from community organizations”),
the need to sleep (e.g., “I need more time for sleep”),
and the need for help maintaining the household (e.g.,
“I need assistance with meal preparation”).
2.2.2. The Zarit Burden Interview (ZBI)
The Zarit Burden Interview (ZBI) is the most widely-
referenced scale used to assess caregiver burden [59].
The self-administered scale consists of 22 items asking
how one feels about their current situation from “nev-
er” to “nearly always”. The questions were devised
using qualitative information on how people tend to
feel when providing care to someone and to evaluate
specific topics that are usually affected in the caregiv-
er’s life (e.g., stress level, emotional health, financial
strain, relationships, embarrassment, and overall bur-
den). Each question is worth 0–4 points, with 88 total
points possible. A higher score correlates with a high-
er level of burden: 0–20 points indicates little or no
burden, 21–40 points reflects mild to moderate burden,
41–60 points indicates moderate to severe burden, and
60–88 points reflects severe levels of burden [20].
2.2.3. The Patient Health Questionnaire (PHQ-9)
The Patient Health Questionnaire (PHQ-9) is a self-
administered examination used to diagnose mental dis-
orders. The PHQ-9 is the module of the PHQ that
specifically evaluates depression. A study of the PHQ-
9 concluded that it is a “useful clinical and research
tool” and is a “reliable and valid measure of depression
severity” [26]. The evaluation consists of nine items
that reflect typical symptoms of depression, and directs
the respondent to indicate a response from 0–3 (“not
at all” to “nearly every day”), depending on how often
they have been bothered by each problem over the past
two weeks. The response scores are totaled, and the
total score ranges from 0 to 27 [56], with higher scores
reflecting higher levels of depression [includes ranges
0–4 “None”, 5–9 “Mild depression”, 10–14 “Moder-
ate depression”, 15–19 “Moderately severe depression”
and 20–27 “Severe depression”]. There is an additional
item at the end of the questionnaire that asks the re-
spondent to indicate the level to which the identified
problems have affected his/her ability to do work or
care for their home/others. The response ranges from
“not difficult at all” to “extremely difficult”, but is not
included in the total score. The PHQ-9 is often used in
epidemiological studies and clinical primary care set-
tings, and can be administered in English or Spanish.
2.2.4. Satisfaction With Life Scale (SWLS)
The SWLS is a global measure of life satisfac-
tion [10]. This instrument consists of self-reported
agreements on a scale from 1 (strongly disagree) to 7
(strongly agree) for the following 5 items: (1) In most
ways my life is close to my ideal; (2) The conditions
 J.C. Arango-Lasprilla et al. / Family needs and psychosocial functioning of caregivers of individuals with SCI
of my life are excellent; (3) I am satisfied with my life;
(4) So far I have gotten the important things I want
in life; and (5) If I could live my life over, I would
change almost nothing. The responses are summed and
the SWLS total score ranges from 5 to 35, with higher
scores indicating higher life satisfaction.
2.2.5. Interpersonal Support Evaluation List (ISEL)
The Interpersonal Support Evaluation List Short Ver-
sion (ISEL-12) consists of a list of 12 statements con-
cerning the perceived availability of potential social re-
sources [9]. The items are counterbalanced for desir-
ability. Half the items are positive statements about
social relationships and half are negative statements.
The ISEL-12 was shortened from the 40-item version
ISEL [9] and designed to assess the perceived availabil-
ity of three separate functions of social support, as well
as providing an overall support measure. The items
which comprise the ISEL-12 fall into three 4-item sub-
scales. The “tangible” subscale is intended to measure
perceived availability of material aid; the “appraisal”
subscale, the perceived availability of someone to talk
to about one’s problems; and the “belonging” subscale,
the perceived availability of people to interact with.
The ISEL has been used widely in health-related re-
search. For the 40-version scale, alpha and test-retest
reliability are approximately 0.90. For the sub-scales,
internal consistency and test-retest reliabilities range
from 0.70 to 0.80, with moderate inter-correlation [9].
2.3. Procedure
Using a database from the Foundation for the Inte-
gral Development of People with Disabilities, we gen-
erated a list of individuals with SCI in Neiva, Colom-
bia. Caregivers of these individuals were contacted and
informed about the purpose of the study, and asked to
participate. Those caregivers who consented to par-
ticipate and met the criteria for the study were asked
to fill out several questionnaires during a visit to their
home. All caregivers completed the Caregiver Needs
Questionnaire (CNQ) which assessed caregiver needs.
Caregivers’ depression levels were assessed via the Pa-
tient Health Questionnaire (PHQ-9), stress levels using
the Zarit Burden Interview (ZBI), social support via
the Interpersonal Support Evaluation List Short Version
(ISEL-12), and life satisfaction using the Satisfaction
With Life Scale (SWLS). The research protocol for all
individuals who consented to participate in the study
was approved by Surcolombiana University.
87
Table 2
Means of reported family needs subscales
Family needs Mean (SD)
1) Information Needs 4.07 (1.08)
2) Economic Support Needs 3.67 (1.29)
3) Emotional Support Needs 3.52 (0.84)
4) Community Support Needs 3.32 (0.91)
5) Respite Needs 3.17 (0.82)
6) Physical Needs 2.96 (0.99)
7) Sleep Needs 2.88 (1.05)
8) Household Help Needs 2.68 (0.92)
9) Psychological Support Needs 2.56 (0.63)
2.4. Statistical analysis
Descriptive statistics (means, standard deviations,
and frequency distributions) were used to describe so-
ciodemographic characteristics of both caregivers and
their patients. The first analysis examined the most
frequent needs of caregivers. All questions in the CNQ
were grouped into subscales and means and standard
deviations were calculated for each. Frequency distri-
butions were also obtained and individual items were
rank ordered by mean score. The second analysis ex-
amined the psychosocial outcomes of the participants.
For each instrument, a total score was calculated based
on the participants’ responses. For the third analysis,
the relationship between caregiver needs and caregiv-
er psychosocial functioning was analyzed using Spear-
man correlations. All analyses were performed using
SPSS v. 17 [39].
3. Results
3.1. Family needs
The family needs questionnaire categories were
rank-ordered based on the mean evaluations of need
provided by family member caregivers. Information,
economic, emotional, community support, and respite
needs were most frequently reported among this group
of Colombian caregivers (see Table 2). Higher means
indicate more frequent needs. The mean evaluations
of specific needs were also assessed and are described
below in terms of most and least frequent needs.
3.1.1. Most frequent specific needs
The needs that were most frequently reported by fam-
ily caregivers were: 1) “I need help from community
organizations” (Mean = 4.29), 2) “I need specialized
information about organizations, associations, and/or
support groups that help or support individuals with
88 J.C. Arango-Lasprilla et al. / Family needs and psychosocial functioning of caregivers of individuals with SCI

Table 3
SCI and their families” (Mean = 4.18), 3) “I need to Correlations between family needs and psychosocial outcomes
receive complete information on the patient’s physi-
Family needs Psychosocial outcomes
cal, cognitive, and emotional problems, including their
PHQ-9 ZARIT SWLS ISEL-12
evolution, prognosis, and treatment” (Mean = 3.94), 4)
Information 0.35∗ 0.50∗∗ −0.10 −0.32
“I need to discuss my feelings about the patient with Emotional Support 0.42∗∗ 0.48∗∗ −0.45∗∗ −0.21
someone who has gone through the same experience” Economic Support 0.48∗∗ 0.49∗∗ −0.36∗ −0.39∗
(Mean = 3.94), 5) “I need money to meet my present Community Support 0.20 0.23 −0.29 −0.41∗
Respite 0.27 0.51∗∗ −0.13 −0.52∗∗
needs” (Mean = 3.72), 6) “I need help to provide for
Household 0.52∗∗ 0.29 −0.41∗ −0.58∗∗
the financial needs of my family” (Mean = 3.64), 7) “I Physical 0.57∗∗ 0.55∗∗ −0.41∗ −0.60∗∗
need respite from caregiving” (Mean = 3.62), and 8) Sleep 0.39∗ 0.56∗∗ −0.38∗ −0.39∗
“I need to discuss my feelings about the patient with Psychological 0.54∗∗ 0.42∗∗ −0.40∗ −0.47∗∗
other friends or family” (Mean = 3.62).
ic, emotional, information, sleep, psychological, and
3.1.2. Least frequent specific needs physical needs were positively correlated with depres-
The needs that were least frequently reported by fam- sion (rs ranged from 0.35 to 0.56, p < 0.01) and burden
ily caregivers were: 1) “I need other family members (rs ranged from 0.42 to 0.56, p < 0.01), while greater
that live at home to help with care and other household economic, household, physical, sleep and psychologi-
duties” (Mean = 2.3), 2) “I need to have friends that cal needs were negatively correlated with satisfaction
I can call on for help when needed” (Mean = 2.54), with life (rs ranged from −0.35 to −0.41, p < 0.01)
3) “I need assistance with meal preparation” (Mean = and social support (r s ranged from −0.39 to −0.59,
2.35), 4) “I need to be able to take care of my health, p < 0.01). Greater community support and respite
which has gotten worse since beginning to provide care needs were negatively correlated with social support
for the person with SCI” (Mean = 2.72), 5) “I need (rs ranged from −0.41 to −0.52, p < 0.01), and more
help caring for children, grandparents, or other depen- emotional needs were also negatively correlated with
dent household members” (Mean = 2.72), 6) “I need satisfaction with life (r = −0.45 p < 0.01). Higher
to spend more time with my friends” (Mean = 2.72), needs for respite were positively correlated with burden
and 7) “I need someone to care for the person with SCI (r = 0.51 p < 0.01), and more household needs were
at night so that I can sleep soundly” (Mean = 2.89). positively correlated with depression (r = 0.52 p <
0.01).
3.2. Caregiver psychosocial functioning

Thirty two percent of the caregivers reported little 4. Discussion

to no burden, 51.4% mild to moderate burden, 13.5%
moderate to severe burden and 2.7% severe burden. A
large portion (56.8%) of caregivers did not report any
symptoms of depression, 18.9% reported mild symp-
toms of depression, 18.9% had moderate symptoms of
depression, and 5.4% had moderate to severe symp-
toms of depression. Approximately 18.9% felt ex-
tremely dissatisfied with their lives, 13.5% were dissat-
isfied, 10.8% were slightly dissatisfied, 2.7% felt neu-
tral, 10.9% were slightly satisfied, while 29.7% felt sat-
isfied, and 13.5% reported feeling extremely satisfied
with their lives.
3.3. Relationship between family needs and
psychosocial functioning
The relationship between family needs and psy-
chosocial functioning of caregivers was analyzed using
Spearman correlations (see Table 3). Greater econom-
The first goal of the present study was to determine
the most frequent needs in a group of family care-
givers of individuals with spinal cord injury in Neiva,
Colombia. Results showed that information, economic,
emotional, community support, and respite needs were
among the most frequently reported needs for this group
of Colombian caregivers. These results coincide with
a previous study by Meade et al. [33] which found that
emotional support, community support, and informa-
tion needs were rated as most frequently unmet in care-
givers of individuals with SCI. Stanton [51] also noted
that spouses expressed a strong need for communica-
tion about physical care (i.e., information). Vargo [53]
indicated that family caregivers relied on emotional,
economic/financial, and community/religious support
in order to function in a positive way.
However, several studies have also found contrasting
results. For example, Meade et al. [33] observed that
 J.C. Arango-Lasprilla et al. / Family needs and psychosocial functioning of caregivers of individuals with SCI
professional and instrumental support were among the
most frequently unmet needs in caregivers of individ-
uals with SCI. Vargo [53] noted that family caregivers
tended to rely on physical and child care support as
part of their support system, and Stanton [51] found
that spouses of individuals with SCI perceived access
to staff as essential.
Some of these differences in results between the
present study and prior research may be explained by
several factors. First, the reported differences in care-
giver needs could be due to the participants’ country of
origin, which can cause a variety of responses. While
the current study used a sample of individuals from
Colombia, South America, Vargo [53], Stanton [51]
and Meade et al. [33] included participants only from
the United States. Cultural/ethnic differences may play
an important role in recognizing needs of caregivers,
since individuals from collectivist cultures like Colom-
bia place an emphasis on group needs over individual
needs. Additionally, socio-cultural background may
play an important role in perceptions of responsibility
and guilt in relation to the individual with SCI [31].
Cultural norms in South America dictate that disabled
individuals should be taken care of by family members.
These family caregivers may be reluctant to ask for as-
sistance from other outside sources. Caregiver needs
may not be as obvious when individuals feel that they
should follow traditional roles and are unable to find
other sources of assistance.
Second, these discrepancies may also be explained
by a difference in questionnaires, some of which may
be used for the same purpose, but may assess different
needs. The current study used the Caregiver Needs
Questionnaire which consists of 27 items in 9 subscales:
emotional, psychological, economic, respite, informa-
tion, health, community, sleep, and household. Previ-
ous studies have used the Family Needs Questionnaire
which consists of 40 items in 6 subscales: emotional,
health, community, instrumental, professional, and in-
volvement with care; the Needs Assessment Question-
naire which includes 24 items concerning psychoso-
cial needs in 4 subscales: communication, staff, vis-
iting hours, and resource people; and sometimes even
open-ended interviews.
Third, time since injury can also have a large impact
on the needs reported by caregivers, since adjustment
and better coping skills may evolve over time. While
the patients in the current study had been injured for
11 to 12 years, the patients in Meade et al.’s [33] study
had been injured for only 44 days and were still in
rehabilitation. Vargo [53] and Stanton [51] did not
89
report time since injury. Fourth, time spent caregiving
on a daily basis can have a large effect on reported
caregiver needs. In the present study, caregivers spent
an average of approximately 80 hours per week caring
for their patient. Time spent caregiving can range from
a couple hours up to a whole day. A caregiver who puts
in a small amount of time per day may have less needs,
while a caregiver who commits an entire day to their
patient, may be unable to balance their responsibilities
with other areas of life.
Fifth, a caregiver’s needs may change based on their
age. Younger caregivers may have trouble coping with
the burden and responsibility associated with caring
for an individual with a spinal cord injury, while old-
er caregivers with more experience, may have devel-
oped effective coping methods and learned to balance
their responsibilities with other areas of their lives. Al-
ternately, older caregivers may have developed health
problems and physical disabilities which make it more
difficult to care for their patients [30], while younger
caregivers may display more physical resilience. The
subjects in the current study had an average age of 44.9
years. Meade et al.’s [33] study participants had an av-
erage age of 43.94 years, Vargo’s [53] participants had
a range of 24–63 years, and Stanton’s [51] participants
had a range of 31–51 years. Sixth, a caregiver’s rela-
tionship to their patient may also have an effect on re-
ported needs. Spouses may find that caregiving is par-
ticularly emotionally difficult at the start, more so than
other family members. Caregivers in the current study
were family members, 29% of whom were spouses of
the individual with an SCI. In contrast, 35% of Meade
et al.’s [33] participants, 20% of Stanton’s [51] par-
ticipants, and 100% of Vargo’s [53] participants were
spouses.
The second aim of this study was to describe care-
givers’ psychosocial functioning. Forty-three percent
of the family caregivers reported some level of depres-
sion, 68% reported being overwhelmed by their care-
taking responsibilities, and 43% reported dissatisfac-
tion with their lives.
Depression negatively affects caregivers both men-
tally and physically. Physical effects can include non-
fatal coronary heart disease in women and mortality
and nonfatal coronary heart disease in men, and psy-
chological problems such as feelings of hopelessness
and anxiety have been associated with depression [43].
Caregiving itself has been shown to increase levels of
metabolic syndrome and depress immune system func-
tioning [43]. When the effects of caregiving and de-
pression are combined, the resulting problems can be-
come life-threatening.
90 J.C. Arango-Lasprilla et al. / Family needs and psychosocial functioning of caregivers of individuals with SCI
In the current study, 43.2% of caregivers reported
mild to severe depression, which is similar to previous
research [5,12,14,46]. Weitzenkamp, et al. [55] ob-
served that spouses of individuals with SCI exhibited
almost twice the affective depression symptoms (3.09,
SD = 4.15 vs. 1.72, SD = 2.66) and more somatic de-
pression symptoms (5.28, SD = 4.18 vs. 4.42, SD =
4.04) than their partners with SCI. Additionally, Raj,
Manigandan, and Jacob [42] found that 53% of their in-
formal caregiver sample experienced either depression
or a mix of depression and anxiety.
Conversely, Dreer et al. [11], found that only 15.7%
of 121 family caregivers met the criteria for probable
depression. Chan [6] also found that spouses in his
three groups on average reported minimal to mild de-
pression; those with an external locus of control, and
limited coping skills and social support reported mild
depression (Mean = 17.09, SD = 9.30); those with an
internal locus of control, and adequate coping skills and
social support reported minimal depression (Mean =
7.58, SD = 5.88); and the last group with equal levels
of locus of control, and mid-range coping skills and
adequate social support also reported minimal depres-
sion (Mean = 10.82, SD = 7.40). The use of different
questionnaires could explain this large discrepancy in
percentages. Dreer et al. [11] used the Inventory to Di-
agnose Depression (IDD), which consists of 22 items
with 5-point scales. Chan [6] used the Beck Depression
Inventory, which consists of 21 statements with 4-point
scales which assess affective and somatic aspects of
depression. The current study used the Patient Health
Questionnaire (PHQ-9) which consists of 9 items with
scales of 1–3.
Of all caregivers in this study, 67.6% experienced
mild to severe burden. This coincides with the findings
of Post et al. [40] in which 50.3% of a 260 caregiver
sample reported moderate to serious burden. Schulz
et al. [46] also noted that burden baseline values in
caregivers of individuals with SCI were higher than
burden values of caregivers of Alzheimer’s patients,
among others. Chan [6] found that spouses with an
external locus of control, and limited coping skills and
social support had higher levels of burden as well.
In contrast, Chan et al. [5] found lower mean scores
of burden in caregivers, which may be explained by sev-
eral differences in caregiver and cultural characteristics.
One factor that may explain the high rates of burden
in the current study could be a lack of resources avail-
able to individuals with SCI and their caregivers. For
instance, in Colombia, day-care facilities and nursing
homes for patients, and support groups for caregivers,
are not available. Rehabilitation is only an in-patient
service and access to medical information is limited.
Another factor that can affect reported burden among
caregivers is socioeconomic status. Previous research
has shown that individuals in a higher socioeconomic
level may employ maids to take care of the individual
with SCI [5]. This type of caregiving practice may have
an effect on levels of burden, which could decrease
with the addition of time to pursue interests and activi-
ties in other areas of life. In the present study, 85% of
the caregivers live in poverty; these caregivers have to
cope not only with the negative effects of caregiving,
but also have to contend with the problems associated
with living in a low socioeconomic bracket. Previous
research has also indicated that caregivers with low ed-
ucation and limited intellectual resources are less likely
to cope effectively with stress and more likely to devel-
op psychological distress [31]. In the present study, the
mean education of participants was 8.4 years (SD =
4.2), which indicates an education level of less than
high school completion.
Other factors that could explain different rates of
burden may include the percentage of spouses who
perform the role of caregiving. The 40 caregivers in
Chan et al.’s [5] sample were all spouses of an individual
with SCI as opposed to 29.7% of caregivers in the
present study. A difference in instruments may also
have an effect on responses. Chan et al. [5] used the
Caregiver Burden Inventory (CBI) which consists of 24
items that evaluate time-dependence, developmental,
physical, social, and emotional burden. The current
study used the Zarit Burden Interview (ZBI) which
consists of 22 items evaluating specific topics, such
as emotional health and financial strain, and overall
burden as well.
In this study, 43.2% of caregivers were slightly to ex-
tremely dissatisfied with their lives while 54.1% were
slightly to extremely satisfied with their lives. Chan et
al. [5] found that life satisfaction, among individuals
with SCI and their caregivers, was rated as slightly dis-
satisfactory (Mean = 19.53, SD = 6.25). Chan [6] also
found that the three groups of spouses in his study rated
life satisfaction as “slightly dissatisfied” up to “slightly
satisfied”; two of the three groups rated life satisfaction
as “slightly dissatisfied” (Mean = 18.55, SD = 6.76;
Mean = 18.12, SD = 5.66). Spouses with adequate
coping skills and social support averaged a mean of
22.42 (SD = 6.11) indicating “slightly satisfied” [6].
In the current study, the mean score for life satisfaction
of caregivers was 20.98 (SD = 9.1) which indicates a
neutral rating. The life satisfaction scores in this study
 J.C. Arango-Lasprilla et al. / Family needs and psychosocial functioning of caregivers of individuals with SCI
and others may be an indication of acceptance and more
realistic expectations of a caregiver with an adjusted
perspective, due to long-term care of an individual with
SCI.
The third aim of the study was to examine the re-
lationship between caregiver needs and caregiver psy-
chosocial outcomes. The results from the correlation
analysis demonstrated that, in general, family needs
were associated with depression, burden, social sup-
port and life satisfaction. Different studies in the liter-
ature have found that variables related to patient char-
acteristics (psychological problems of the patient, time
since injury etc.), caregiver characteristics (age, educa-
tion, gender, marital status, etc.), and some factors re-
lated to the caregiving situation (amounts of assistance
provided for the person with SCI) could be associat-
ed to caregiver psychosocial functioning [11,31,40,47].
To our knowledge, there are no studies that have been
published in the literature looking at the relationship
between family needs and psychosocial functioning in
individuals with SCI.
We hypothesized that some caregivers’ needs will
predict, and at the same time, maintain psychosocial
problems in caregivers, even after adjusting for patient
characteristics, caregiver characteristics, and caregiv-
er situation. The new challenges caregivers have to
confront, such as economic problems, home modifica-
tions, lifestyle modifications, family role changes, and
increased social isolation may be related to increased
depression, and burden, and decreased social support
and satisfaction with life. However, this study is cross-
sectional, thus it is not clear if the relationship between
needs and psychosocial outcomes is causal or if care-
givers with poor psychosocial outcomes report more
needs. Although previous research has found that de-
mographic factors, injury-related characteristics, and
caregivers’ traits may relate to psychosocial outcomes,
the small sample size of the present study did not al-
low for control of these variables. Future prospective,
longitudinal research should include a diverse sample
of caregivers in order to determine if needs precede
psychosocial functioning of caregivers after statistical-
ly controlling for confounding factors. This will help
identify both at-risk caregivers who can be targeted
for intervention, and modifiable factors (such as cop-
ing strategies, and use of resources) that may result in
improved long-term psychosocial outcomes.
The results of the present study should be interpret-
ed under consideration of the following limitations: 1)
Caregivers in this study may have needs that are not
included in the CNQ (e.g., professional or instrumen-
91
tal needs); 2) The psychosocial functioning of care-
givers in our sample before taking on the responsibil-
ity of caregiving was not known; it is possible that
pre-existing conditions among these caregivers influ-
enced the rates of depression, burden, and satisfaction
found in this study; 3) These results do not generalize
to South American caregivers in rural areas or towns
with less access to services; 4) The selection of the
nine Caregiver Needs Questionnaire subscales used in
this study was determined through an analysis of the 27
survey items conducted by two clinically-experienced
psychologists. Due to the small sample size, we could
not conduct a factor analysis in order to verify the va-
lidity of this classification.
In conclusion, to our knowledge this is the first study
about family needs and psychosocial functioning in
Spanish speaking caregivers of individuals with SCI in
the literature. Information, economic, emotional, and
respite needs, as well as community support, were most
frequently reported among this group of Colombian
caregivers. Forty-three percent of the family caregivers
reported some level of depression, 68% reported be-
ing overwhelmed by their caretaking responsibilities,
and 43% reported dissatisfaction with their lives. In
general, family needs were associated with depression,
burden, social support and life satisfaction. Rehabil-
itation professionals should design and implement in-
tervention programs to reduce stress, burden, and de-
pression and improve family needs, social support and
life satisfaction of caregivers of individuals with SCI in
Colombia.
Acknowledgements
Supported in part by the National Institute on Dis-
ability and Rehabilitation Research, Office of Special
Education and Rehabilitative Services, US Department
of Education (grant no. H133A070036).
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