Spinal Cord (2017) 55, 964–978

& 2017 International Spinal Cord Society All rights reserved 1362-4393/17
www.nature.com/sc

REVIEW
The impact of spinal cord injury on the quality of life
of primary family caregivers: a literature review
J Lynch1 and R Cahalan2

Study design: Literature review.

Objectives: To provide a detailed review of the literature regarding the impact of spinal cord injury (SCI) on the quality of life (QOL) of
family members who have become the primary caregiver and to highlight potential interventions available.
Methods: Appropriate databases were searched for relevant peer-reviewed studies. Twenty-five studies (four qualitative and
21 quantitative) were identified which investigated the role that family members play in caring for people with SCI and the impact
it has on their QOL.
Results: Depression, anxiety, physical symptoms and reduced satisfaction with life in primary family caregivers of patients with SCI
were commonly reported across the literature. Isolation, loss of identity and role changes were also regularly reported as negative
outcomes of caregiving for someone with an SCI. A range of interventions (including family training, problem-solving training and
support groups) have been shown to have benefits for family caregivers' QOL.
Conclusion: SCI impacts significantly on the QOL of family caregivers, with major implications for physical, mental and social aspects
of caregiver health. This review highlights that these important issues are problematic internationally and may persist over several
decades. The need for focused interventions to support family caregivers of spinal cord injured persons, with particular emphasis on
increasing patient/family education and access to support groups, is recommended.
Spinal Cord (2017) 55, 964–978; doi:10.1038/sc.2017.56; published online 27 June 2017

INTRODUCTION There is much published evidence to highlight the impact of

Spinal cord injury (SCI) is a life-altering condition that significantly caregiving on the QOL of family members caring for people with a
impacts upon the person affected, immediately altering their daily life, variety of conditions including cancer,7 stroke,8 traumatic brain
independence and role within their family and society.1 In certain injury,9 multiple sclerosis,10 Parkinson’s disease,11 dementia12 and
instances, SCI may render a person dependent on caregivers, with palliative conditions13 with common themes of increased anxiety,
family members often forced to take on the role for a variety of social depression, burden and lower satisfaction with life frequently reported.
and economic reasons.2,3 Costs associated with SCI are higher than The aim of this study is to review the published literature regarding
those of comparable conditions such as dementia, multiple sclerosis the impact of SCI on the QOL of family caregivers, to highlight
and cerebral palsy,1 with annual healthcare and living expenses common themes addressed, to discuss outcome measures used and
incurred approximating US$185 000 in some cases.4 This financial suggest possible interventions.
burden in addition to any income forgone by the patient can have a
MATERIALS AND METHODS
significant effect on the entire family unit.5
Search strategy
The World Health Organisation (WHO) describes quality of life
In November 2016, a detailed search of electronic databases Medline,
(QOL) ‘as an individual's perception of their position in life in the
Amed, Cinahl Plus, SportDiscus, PsycArticles, PsycInfo, Embase,
context of the culture and value systems in which they live and in
ScienceDirect, Pedro and Cochrane Library was conducted for
relation to their goals, expectations, standards and concerns. It is a
published, peer-reviewed journals from 1979 to the present. The
broad ranging concept affected in a complex way by the person's
search terms applied were ‘spinal cord inj*’ AND ‘care*’ AND ‘family’
physical health, psychological state, personal beliefs, social relation-
OR ‘spouse’. Results were screened for relevance and reference lists of
ships and their relationship to salient features of their environment’.6 accepted studies were also searched.
Within this broad definition are important areas including satisfaction
with life, self-esteem, pain and mood. As such, QOL can be perceived Inclusion and exclusion criteria
as poor in certain domains and acceptable or good in others. The Inclusion criteria
complexity of such a concept has resulted in a plethora of approaches  Family members who are primary caregivers of adult (18 years+)
to measuring QOL. In this study, QOL will focus on aspects including SCI survivors.
mental and physical health and life satisfaction.  Studies assessing QOL or life satisfaction of caregiver.

1
Physiotherapy Department, National Rehabilitation Hospital, Dublin, Ireland and 2Health Sciences Building, Faculty of Education and Health Sciences, University of Limerick,
Limerick, Ireland
Correspondence: J Lynch, Physiotherapy Department, National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Dublin A96P235, Ireland.
E-mail: john.lynch@nrh.ie
Received 5 December 2016; revised 14 April 2017; accepted 16 April 2017; published online 27 June 2017
 Impact of SCI on QOL of family caregivers—review
J Lynch and R Cahalan
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 Peer-reviewed, published journals from 1979 to present. 25 studies reviewed, four of which were qualitative in nature (Table 1)
 English language full text available. and 21 of which contained quantitative data (Table 2).

Exclusion criteria Quality of studies

 Unable to isolate SCI data from other conditions (for example, Under the Oxford Centre for Evidence–Based Medicine Levels of
traumatic brain injury). Evidence system, the majority of studies reviewed were considered
 Studies featuring non-family carers. level 3 studies consisting of cross-sectional studies (with inconsistently
 Non-peer-reviewed, published articles, case studies or conference applied reference standard and blinding), often with non-randomized
presentations. samples and small sample sizes. There were four level 2 studies
reviewed—all of which were randomised controlled trials,16–19 but
these studies had a number of inherent weaknesses including small
Assessment of methodological quality
study cohorts and inconsistent description of processes involved18 in
Methodological quality was assessed using the Oxford Centre for
addition to poor completion rate.17 All of the qualitative studies20–23
Evidence–Based Medicine levels of evidence guidelines14 for the
give explicit descriptors of the subjects involved, the recruitment
quantitative studies and using the recommendations described by process, and the methodology used to transcribe, synthesise and
Anderson15 for the qualitative studies. analyse data. All studies consistently use direct quotations from the
subjects throughout the results and discussion sections to support
RESULTS themes identified and emphasise the importance of the results
The database searches yielded 1147 studies, which after screening of identified in the work. Three of the studies20,22,23 also highlight
potential limitations to their research—specifically in recruitment of
abstracts and application of inclusion/exclusion criteria resulted in 22
subjects20,22 and small sample sizes.21–23 Despite the potential biases,
studies being included for this review (Figure 1). The most common
the qualitative studies ensure the results are relevant through detailed
reasons for exclusion were studies containing non-family carers,
description of the processes involved, use of experienced investigators
studies containing a combination of conditions (not exclusively SCI) and thorough recording and analysis of the interviews and provide
and non-published studies. Three additional studies were identified additional insight into the challenges the family caregiver faces that are
from the reference lists of the initial search results, giving a total of not captured in the quantitative research. Details of study design, data
collection methods, participants and main findings are presented in
Tables 1 and 2. Further evaluation of the qualitative studies is
presented in Table 3.

Interventions and outcome measures

Numerous interventions to support family caregivers are discussed in
the reviewed studies. These include face-to-face problem-solving
training,16 video problem-solving training,17 psycho-educational
interventions,18 computer/telephone technology19 and support
groups.24 Frequency of interventions varied from monthly
interventions16,17 to three times a week,24 with the duration of each
intervention lasting 60–90 min in most instances.18,19,24
These studies suggest that education and standardised information
are the most beneficial interventions in improving the health and
outcomes of the caregiver, particularly when sessions also include the
care recipient. These interventions are shown to improve caregiver
general health, mental health, physical functioning and bodily pain
outcomes. Group sessions are also reported to help with social
integration, feelings of isolation and regaining a sense of identity
through meeting other families in similar positions in addition to
interacting with and learning from trained healthcare professionals.
Support groups were also shown to positively impact upon caregiver
QOL (Table 4)24. A common theme in many of the studies was the
need to include family members in the rehabilitation process post-SCI
from the outset.2,5,16–19,24–26 Also, that there may be some potential
for tele-health16,17 and community based support2 to help assist
caregivers on an ongoing basis.
A variety of outcome measures were used in the studies reviewed,
with 28 different quantitative outcome measures employed to assess
the broad range of issues that impact upon QOL. This may be
reflective of both the breadth of defining a topic such as QOL and also
the diverse geographical locations and languages of the participants for
each of the studies. As discussed previously, QOL encompasses a
Figure 1 Flow chart of study selection procedure. A full color version of this broad range of domains including physical and mental health, and this
figure is available at the Spinal Cord journal online. is reflected in the diversity of outcome measures used by the studies in

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Table 1 Qualitative studies focussing on SCI family caregivers’ experiences

Reference and Sample size Family Recruitment location Data collection Qualitative analysis Findings
Country and caregiver member
sex

Charlifue 73 (11 Male, 39 Spouses/ Four SCI rehabilitation Semi-structured interview as a focus Groups recorded and transcribed verbatim, systema- Four main themes identified (positive/negative
et al.20 62 female) partners, Facilities in USA group at each of the facilities involved, tic qualitative analysis using N’Vivo Software. Con- aspects of caregiving, health issues, life changes and
USA 27 Parents, lasting 90–120 min. Total of 16 focus stant comparative analysis used for each transcript, sources of strength/coping strategies). Positive and
7 Other groups completed concepts identified using open and axial coding negative issues involved in caregiving but ‘positive
relatives aspects were disproportionately limited in compar-
ison to negative themes’. Emotional/physical strain,
loss of identity and fatigue/lack of sleep common
issues. Lack of spontaneity and limited socialisation
problematic. Feeling more and less appreciated by
family members highlighted, friends/co-workers
source of support, others find support from within

Chen and 15 (2 Male, 8 Parents, Rehabilitation hospital Semi-structured interview and group Line-by-line in vivo coding, categories and subcate- 3 Categories identified: (1) ‘catastrophic life event’
Boore21 13 female) 5 spouses, in Taiwan discussion gories identified (worry, uncertainty, family role changes); (2) ‘con-
J Lynch and R Cahalan
Impact of SCI on QOL of family caregivers—review

Taiwan 1 Child, fronting challenges’ (future planning, seeking edu-

1 Sibling cation); and (3)‘family resilience’ or ‘family
breakdown’ (positive or negative support systems,
communication)

Dickson 11 (1 Male, Spouses QENSIUS and SIS 1 in QENSIUS, 10 in caregivers Interpretative phenomenological analysis, master 3 Master themes: (1) ‘emotional impact of SCI’ (fear,
et al.22 10 female) homes, interview, open-ended, themes and sub-themes identified grief, loss, anxiety, uncertainty); (2) ‘post-SCI shift in
UK non-directive question relationship dynamics’ (role reversal, maternal-role
adoption); and (3) ‘impact of caregiving on identity’
(loss of identity)

Lucke et al.23 9 (1 Male, 5 Spouses, Three SCI Centres in Semi-strucutred interviews (11 in Recorded and transcribed bilingually (English and Resolving to Go Forward was the core category
USA 8 female) 4 Parents Southern Texas total), two face-to-face and seven via Spanish), Spanish answers translated to English by identified in themes of 'learning to care for' the SCI
telephone due to difficulty travelling to the team involved. Grounded theory data analysis survivor and 'getting through' the difficulties. Facing
SCI centre approach taken, constant comparative analysis used the future best for family in spite of physical/emo-
to identify the categories tional tolls taken on caregiver. Caregivers neglecting
their own health highlighted, negative perception of
external paid home-care workers.
Feeling isolated, alone, overwhelmed and sad. Sense
of loss and loss of role in family.

Abbreviations: QENSIUS, Queen Elizabth National Spinal Injuries Unit Scotland; SCI, Spinal Cord Injury; SIS, Spinal Injuries Scotland.
 Table 2 Quantitative studies focussing on SCI family caregivers' experiences

Reference and Sample size Family member Length of caregiving Study design recruitment Outcome measure (s) used Findings
country and caregiver role (years/hours per
sex week)

Arango-Lasprilla 37 (5 Male, 18 Parents 11.79 (±8.83) years Cross-sectional. recruited from local CNQ, ZBI, PHQ-9, SWLS 21 Caregivers report ‘no depression, 16 report being dissatisfied
et al.2 32 female) 11 Spouses 79.9 (±45.3) hours foundation for disabled rights (con- and ISEL-12 with life abe 25 report some level of burden and being
Colombia 6 Siblings per week venience sample) overwhelmed by role as caregiver. Younger caregivers scored better
2 Other family members for physical abilities but less so for coping skills, older caregivers
had better coping skills but more physical ailments.

Blanes et al.3 60 (11 Male, 16 Wives 5.2 (±4.9) years Cross-sectional, convenience sample Short form health survey Care recipients primarily male low scores on all domains of SF-36
Brazil 49 female) 14 Sisters 79.1 (±58.03) hours recruited via outpatients departments (SF-36), CBS and CBS, bodily pain and vitality scoring lowest. 23 Caregivers
11 Mothers per week at ‘Sao Paulo Hospital and two suffering from chronic illness; score significantly worse for pain,
19 Other family members rehabilitation centres’ physical function, general health and mental health

Chan25 40 (5 Male, 40 Spouses ⩾ 2 years Cross-sectional, purposive sample. PSR, WOC, BDI, SWLS, Spouses with external locus of control, poor coping strategies and
China 35 female) No information given Structured questionnaires and semi- CBI limited social support (n = 11) scored highly for depression and
on hours/week structured interviews, recruited from burden and low for satisfaction with life. Those in full-time
caregiving local hospital and health centres employment suffered most with stress

Coleman et al.5 34 (3 Male, No details provided ⩾ 6 Months Cross-sectional, convenience sample ZBI, SWLS, PHQ-9, RSES, Physical function, pain and general health significantly
Colombia 31 female) No information given recruited from local foundation for STAI associated with caregiver burden, anxiety and satisfaction with life.
on hours/week disabled rights Poor general health in SCI survivor linked to low caregiver
caregiving satisfaction with life. Lower pain levels in SCI survivors
associated with higher burden, anxiety, depression and lower
self-esteem in caregivers. No statistically significant link between
employment and satisfaction with life or depression
J Lynch and R Cahalan

Decker et al.42 67 (8 Male, 57 Spouses No information given Cross-sectional, recruited via family LSIA-A, CES-D, non- Better perceived health and social support associated with less
USA 59 female) 10 Other family members on total years member with SCI who had previously standardised ‘Likert-type’ depression and higher life satisfaction,
caregiving participated in research by the author scales assessing ‘health Lower life satisfaction and increased depression associated with
No information given status’, ‘social support’ increased hours caregiving, needing increased assistance with
on hours/week and ‘perceived control’ ADLs and increased perceived burden.
caregiving Caregivers not more at risk of depression than normal populace
Impact of SCI on QOL of family caregivers—review

Dreer et al.29 121 (18 Male, 46 Spouses oOne year Cross-sectional, recruited during IDD, SPSI-R More severe injury for SCI survivor more likely to lead to caregiver
USA 103 female) 45 Parents ⩾ 42 hours per week initial inpatient admission depression. 19 caregivers meet criteria for major depressive
10 Sisters disorder. Depressed caregivers more likely to report problems with
9 Children pain and ill-health and to display dysfunctional problem-solving
11 Other family members style.

Ebrahimzadeh 37 (0 Male, 37 Spouses Not stated clearly, but Cross-sectional, convenience sample SF-36 Significantly lower mental health scores in wives than in their SCI
et al.33 37 female) reported 420 years recruited through local University surviving husbands. Lower general health and higher bodily pain
Iran No information given scores in wives than husbands also noted. Better physical function
on hours/week scores in SCI husbands correlated with better mental health scores
caregiving in wives 29 caregivers unemployed
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Table 2 (Continued )

Reference and Sample size Family member Length of caregiving Study design recruitment Outcome measure (s) used Findings
country and caregiver role (years/hours per
sex week)

Ebrahimzadeh 72 (0 Male, 72 Spouses of SCI Not stated clearly, Cross-sectional, prospective study. HADS, WHOQOL-BREF All outcomes worse for spouses of SCI survivors than control, with
et al.30 72 female) patients but reported 420 Convenience sample recruited via significantly higher depression also noted. Higher depression
Iran Control cohort of years local military organisation associated with youth, lower education and lower QOL. Lower QOL
74 spouses of non-SCI No information given associated with higher probability of anxiety. 64 Caregivers
injured patients at local on hours/week unemployed
clinic caregiving

Ebrahimzadeh 72 (0 Male, 72 Spouses o22 years for 48 Cross-sectional, convenience sample, SF-36 All sub-scales of SF-36 significantly lower for spouses in this
et al.31 72 female) caregivers, ⩾ 22 years recruitment method not explained study than normative values for Iranian women. Older
Iran for 24 caregivers caregivers had reduced physical function and QOL. Better
educated caregivers had better physical function and QOL.
Being employed and longer duration of caregiving associated
with lower physical functioning and QOL. 64 Caregivers
unemployed

Elliott and Berry16 60 (11 Male, 22 Spouses oone year RCT. Controls: n = 30 Intervention: SF-36, IDD, SPSI-R Outcomes measured at baseline, 6 months and 12 months.
USA 49 female) 26 Parents No information given n = 30 Intervention: three Individually tailored problem-solving technique and ongoing
J Lynch and R Cahalan
Impact of SCI on QOL of family caregivers—review

7 Siblings on hours/week face-to-face problem-solving education lowered dysfunctional problem-solving (which is

4 Children caregiving technique sessions. Educational associated with increased depression and lower mental health).
1 Other family member materials and telephone contact as However no significant effect was noticed for the
requested intervention reducing depression in family caregivers. No figures
on employment status of groups

Elliott et al.17 61 (7 Male, 24 Spouses 2.67 (±5.7) years RCT. Controls: n = 29, Intervention: SF-36, IDD, SWLS Outcomes measured at baseline, 6 and 12 months. At 6 month
USA 54 female) 19 Parents No information given n = 32 Intervention: monthly assessment, problem-solving technique appears to reduce
4 Grandparents on hours/week problem-solving training sessions via depression but by 12 month assessment, no difference noted.
3 Siblings caregiving video-link. Recruited via inpatient 28 Caregivers discontinued study (n = 16 of control group, n = 12
5 Daughters rehabilitation facility and community of intervention) which authors state affected the outcome and thus
6 Other family members cannot make conclusion about the impact of problem-solving
technique via video-link. However, the suggested problem-solving
technique may help social functioning of
caregiver over time. No figures on employment status of
groups.

Lucke et al.26 10 (1 Male, 4 Mothers o6 Months Mixed-method longitudinaldesign. SF-36, VAS for QOL Outcomes measured at 1, 3 and 6months post-
USA 9 female) 4 Spouses No information given Convenience samplerecruited prior to inpatientrehabilitation. SCI survivorsgenerally scored lower
2 Sisters onhours/week dischargefrom inpatient facility, thancaregivers in all domainsexcept mental health andvitality.
caregiving face-tofacein-depth interviews Caregiver QOL lower at 3 months butreturns to initial level at
6months (suspected due tophysicalimprovements/independencein
paraplegic patients andprovision of paid carers fortetraplegics).
No figures onemployment status of groups
 Table 2 (Continued )

Reference and Sample size Family member Length of caregiving Study design recruitment Outcome measure (s) used Findings
country and caregiver role (years/hours per
sex week)

Molazem et al.18 62 (3 Male, 24 Spouses 9.00 (±6.5) years RCT, Controls: n = 36, Intervention: SF-36 Outcomes measured pre-intervention, 2 weeks and 6 weeks
Iran 59 female) 32 Parents No information given n = 26Intervention: post-intervention. 13 caregivers discontinued study (n = 6 of
4 Sisters on hours/week 4 × 90 min. educational sessions intervention and n = 7 of control) due to insufficient
2 Other family members caregiving Recruited via referral to local welfare participation/withdrawal. All participants showed low QOL, parti-
organisation cularly inmental health sub-set. After intervention, non-significant
improvements in caregivers' vitality, bodily pain, general health and
mental health reported. No figures on employment status of groups

Nogueira et al.41 59 (6 Male, 22 Spouses No information Cross-sectional, observational study SF-36, CBS All aspects of SF-36 reduced, especially role physical and pain.
Brazil 53 female) 14 Mothers given on total years Recruited via Brazilian Unified This was worse for caregivers of tetraplegics. Reduced QOL
9 Sisters caregiving Health System, SaoPaulo reported for caregivers, especially if care recipient has complica-
14 Other family members No information given tions. Hypertension and depression also reported.
onhours/week
caregiving

Nogueira et al.73 59 (6 Male, 22 Wives No information Cross-sectional SF-36 (Portuguese version Lowest mean scores associated with role physical, bodily pain,
Brazil 53 female) 14 Mothers given on total years Survey in institutions accredited by ‘culturally adapted to vitality and role emotional. Age and hours spent on care daily
9 Sisters caregiving Unified Health System from 1998 to Brazil’) negatively correlated with all domains of SF-36, weak positive
14 Other family members Range of care hours 2008 to identify appropriate families correlation seen for increased length of time caregiving (in years).
‘from half an hour to Female caregivers scored lower for role physical and role emotional,
the entire day’, no male caregivers scored lower for physical functioning, bodily pain,
further detail given general health and social role

Paker et al.60 31 (11 Male, 14 Spouses No information Cross-sectional HADS, Brief WOC High anxiety and depression in early stages post-injury, both
J Lynch and R Cahalan

Turkey 20 female) 11 Siblings given on totalyears Recruited during initial inpatient correlated negatively with SCI duration (i.e. the longer post-injury,
2 Mothers caregiving admission the lower the anxiety and depression)
2 Children No information given
2 Other relatives onhours/week
caregiving

Raj et al.28 53 (27 Male, 18 Parents No information Cross-sectional LSS, Revised CIS-R 28 Caregivers score highly for psychiatric morbidity (most com-
Impact of SCI on QOL of family caregivers—review

India 26 female) 16 Spouses given on totalyears Recruitment method not clearly monly depression or mixed anxiety depression) with female spouses
9 Siblings caregiving explained at statistically significant higher risk. Similarly, female spouses
5 Children No information scored significantly lower on LSS. No figures on employment status
5 Other family members given onhours/week of groups
caregiving

Schulz et al.19 173 (42 Male, 120 Spouses 1–63 Years RCT (dual intervention) CES-D, ZBI Outcomes measured at baseline, 6 and 12 months post interven-
USA 131 female) 4 Parents (median = 8 years) Control group: n = 60 tion. 26 Caregivers discontinued study (n = 20 of intervention and
14 Children No information given Intervention 1 (caregiver only): n = 6 of control) with main reasons refusal to continue, unable to
34 Other family members on hours/week n = 56 contact, moving out of area, illness and death. Caregivers in dual-
caregiving Intervention 2 (dual-target caregiver/ participant group (caregiver and recipient both involved in
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Table 2 (Continued )

Reference and Sample size Family member Length of caregiving Study design recruitment Outcome measure (s) used Findings
country and caregiver role (years/hours per
sex week)

care recipient): n = 57 intervention) had significantly less health problems and signifi-
Control group: standardized packet of cantly lower depression than caregiver only intervention group and
written information on SCI and three control group. 24 unemployed, 45 retired, 17 home-makers and
‘check-in’telephone calls over 87 employed.
9 months intervention for both
groups: seven 60–90 min individual
sessions and five structured,
telephone-based support group
sessions over 6 months

Sheija and 36 (2 Male, 36 Spouses No information Quasi-experimental pretest/post-test HADS, WHOQOL-BREF, Reports of significant anxiety and depression in the group spre-
Manigandan24 34 female) given on total years design, thrice weekly. One hour GHQ-12 intervention. Significant improvement in QOL and reduction in
India caregiving group sessions for seven sessions anxiety and depression in experimental group after intervention.
No information given (experimental) versus nointervention Three subjects in paid employment, 33 housewives. 20 spouses
on hours/week (control) report ‘receiving help’ with caregiving
caregiving Limited information on recruitment
process
J Lynch and R Cahalan
Impact of SCI on QOL of family caregivers—review

Shewchuk et al.32 62 (8 Male, Not mentioned No information Longitudinal design, assessments CESD, STAI, PILL, PANAS Considerable distress, anxiety and depression recorded among
USA 54 female) given on total years carried out at1, 6 and 12 months family caregivers, with higher anxiety recorded among caregivers of
caregiving post discharge from in patient younger SCI survivors. Caregiver anxiety also linked to caregiver
No information given rehabilitation physical health. No figures on employment status of groups
on hours/week
caregiving

Weitzenkamp 124 (12 Male, 124 Spouses, only Not mentioned, but Population-based longitudinal study CESD, PSS, LSI-Z, QOL Caregiving partners had more depression, physical and emotional
et al.27 112 female) 80 reported as being SCI survivors reported and Individual Needs stress, fatigue, anger and burnout than non caregiving spouses,
UK primary caregiver to havehad SCI for Questionnaire with lower satisfaction with their lover and lower well-being.
‘at least 23 years’ Spouses more depressed than their SCI surviving partner. No
No information given figures on employment status of groups. No figure on hours per
on hours/week week caregiving.
caregiving

Abbreviations: ADLs, activities of daily living; BDI, Beck Depression Inventory; CBS, Carer Burden Scale; CBI, Caregiver Burden Inventory; CES-D, Centre for Epidemiologic Studies—Depression Scale; CNQ, Caregiver Needs Questionnaire; HADS, Hospital
Anxiety Depression Scale; IDD, Inventory to Diagnose Depression; ISEL, Inter-personal Support Evaluation List; LSIA-A, Life Satisfaction Index-A; PSR, Provision of Social Relationship; PHQ9, Patient Health Questionnaire; QOL, quality of life; RCT, randomised
controlled trial; RSES, Rosenberg Self-Esteem Scale; SCI, spinal cord injury; ZBI, Zarit Burden Interview; SWLS, satisfaction with life scale; SPSI-R, SF-36, Social Problem-Solving Inventory—Revised; STAI, State Trait Anxiety Inventory; WOC, ways of coping
checklist; WHOQOL-BREF, World Health Organisation Quality of Life-BREF.
 Table 3 Evaulating qualitative studies (Anderson15)

Reference Clear Terminology explained and Selection criteria clearly Method of recording and tran- Sufficient data Outlying negative Findings Discussion of Strengths, limitations
research ethical approval process explained, recruitment scribing data and process of presented to allow or deviant cases presented in existing literature and potential biases
question? described? method described and analysing and verifying reader to assess if highlighted? relation to and how present discussed?
study sample/location described? Themes identified? interpretation is other research research
described? accurate? in the area? contributes to it?

Charlifue Yes—clearly Yes—terminology broadly Yes—including demo- Yes—recording and verbatim No—specific No Yes Yes Yes—convenience sam-
et al.20 identified in described, abbreviations graphic data, location transcribing of groups, Nvivo 8 quotations used to pling used, carers were
the abstract explained and approval from and method software used to assist sys- back up themes predominantly of tetraple-
for the study Institutional Review Boards of recruitment and tematic qualitative analysis, identified but limited gic patients, no mention
acknowledged inclusion/exclusion three researchers independently data given numbers of complete or incomplete
criteria examined each transcript using involved injuries
constant comparitive anaylsis
using open and axial coding to
indentify themes, consensus
used when differences on
appropriate coding occurred

Chen and Yes—aims Yes—terminology broadly Yes—informed Yes—Grounded theory approach No—specific No Yes Yes No—mention of triangu-
Boore21 explained in described, abbreviations consent obtained by all used. Semi-structured, tape quotations used to lation used to help
abstract and explained and approval from participants. Demo- recorded interviews. In vivo back up themes strengthen research but
introduction Institutional Review Boards graphic data, location coding identified categories and identified but limited otherwise limited
and University Ethics and inclusion criteria subcategories. Constant com- data. Small numbers
Committee obtained recorded paritive analysis used with tri- involved.
angulation to help develop
themes

Dickson Yes—aim Yes—ethical approval Yes—recruitment Yes—interviews recorded and No—specific Yes—specific Yes Yes Yes—possible selection
J Lynch and R Cahalan

et al.22 explained in obtained from relevant NHS location and process transcribed verbatim, roles of quotations used to examples of con- biases identified in
abstract board and institution involved, clearly explained, inclu- each reviewer explicitly stated back up themes trasting and out- recruitment process, three
limited explanation of termi- sion and exclusion cri- and process of developing identified but limited standing feed- authors involved in
nology (e.g., interpretative teria stated, limited themes reported (using inter- data. Small numbers back highlighted conducting interviews and
phenomenological analysis) information on subjects pretative phenomenological involved. analysing data, use of
recorded analysis) triangulation to help with
reducing bias, all involved
Impact of SCI on QOL of family caregivers—review

had marriages that

survived the SCI

Lucke Yes—detailed Yes—terminology broadly Yes—including Yes—semi-structured inter- No—specific No Yes Yes Yes—small sample size,
et al.23 description in described, abbreviations demographic data, loca- views, grounded theory quotations used to time and distance to
abstract explained and approval from tion and method of approach using constant com- back up themes travel highlighted as
Institutional Review Boards recruitment and paritive analysis, separately identified but limited issues, researchers
acknowledged inclusion/ coded and then consensus used data. Small numbers involved in translation of
exclusion criteria as needed involved. interviews from Spanish to
English in some instances

Abbreviations: NHS, National Health Service; QOL, quality of life; SCI, spinal cord injury.
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Table 4 Types of intervention and outcomes achieved

Reference and Type of intervention Frequency of assessment Outcome measure Outcomes

country (s) used

Elliott and Berry16 Problem-solving training Outcomes measured at SF-36, IDD, Post-intervention ouctomes show a decrease in dysfunctional
USA Intervention a combination of three face-to-face PST sessions (baseline, baseline, 6 months and SPSI-R problem-solving over time for caregivers who received PST and an
6 months and 12 months) with educational materials and telephone 12 months increase among caregivers in the control condition.
contact as requested vs control of 'usual care' consisting of usual access post-participation Both groups had declining physical functioning over time but the rate
to outpatient staff and information from rehabilitation centre regarding of decline was much steeper for caregivers assigned to the control
SCI management group. Social functioning increased over time in the intervention
PST was explained in the steps as per Elliott et al.17 group but neither of these changes were significant.

Elliott et al.17 Video PST Outcomes measured at SF-36, IDD, 28 Caregivers discontinued the study and their follow-up data were
USA Intervention a combination of initial face-to-face introduction/training of baseline, 6 months and SWLS, SPSI-R unavailable at the final assessment.
technology followed by 12, monthly video PST sessions and telephone 12 months Post-intervention results show older caregivers were more likely than
contact as requested vs control of standard education materials with post-participation younger caregivers to remain in the study. Intent-to-treat analyses
opportuity to discuss same at monthly video-conferencing interaction. projected a significant decrease in depression among caregivers
PST was explained in five basic steps: (a) problem definition; receiving PST; efficacy analyses indicated this effect was pronounced
(b) optimism and positive orientation toward problem-solving; at the 6th month assessment
(c) creativity and generating alternatives; (d) understanding and deci-
sion-making; and (e) solving the problem with implementation and
evaluation of a solution
J Lynch and R Cahalan
Impact of SCI on QOL of family caregivers—review

Molazem et al.18 Group educational sessions Outcomes Measured SF-36 All the study participants had a low QOL and the lowest score was
Iran Intervention of 90 min sessions once a week for 4 weeks vs control of pre-intervention, 2 weeks related to mental health in both groups.
education booklet only and 6 weeks Post-intervention results showed all dimensions of the intervention
Intevention a combination of lecture, questions and answers, and post-intervention group caregivers’ life quality had improved while no significant
discussion. Specifics of intervention broadly described as 'strategies of difference was observed in the control group.
coping with stress and depression, relaxation techniques, crisis con- A statistically significant difference was found between the two
frontation strategies, principles of correct relationship within the family, groups regarding all the dimensions of life quality
and strategies for providing the SCI patients with correct physical care,
preventing backache, and accurately transferring the patients from the
bed to the wheelchair and vice-versa'

Schulz et al.19 Individual education sessions and telephone support group Outcomes measured at CES-D, ZBI 26 Caregivers discontinued study (20 from intervention groups and 6
USA Dual intervention groups of caregiver only intervention and carergiver/ baseline, 6 months and from control group) with main reasons refusal to continue, unable to
care-receipient dyad vs control of three 'check-in' telephone calls and 12 months contact, moving out of area, illness and death.
standard written information on SCI, aging, community resources and post-participation Caregivers in dual-participant group (caregiver and recipient both
caregiving involved in intervention) had significantly less health problems and
Intervention delivered over 6 months consisting of seven 60–90 min significantly lower depression than caregiver only intervention group
individual sessions and five structured telephone support groups, and and control group, and improved QOL compared with the control
standard written information as per control group above. Intervention group
targetted five areas: lack of caregiving knowledge, social support/
integration, emotional well-being, communication and self-care/physical
health
 Impact of SCI on QOL of family caregivers—review
J Lynch and R Cahalan
973

group, with significant reduction in anxiety and depression also noted

with no significant difference in their levels of depression, anxiety and

domains of QOL in the experimental group as compared to the control

Pre-intervention, both groups had significant depression and anxiety
the current review. Table 5 provides further detail on the construct or

Abbreviations: CES-D, Centre for Epidemiologic Studies—Depression Scale; IDD, Inventory to Diagnose Depression; PST, problem-solving training; SCI, spinal cord injury; SF-36, Short Form 36; SPSI-IR, Social Problem-Solving Inventory; SWLS, Satisfaction
area measured by each outcome measure, as well as the associated

Post-intervention results showed significant improvement in all

psychometric properties of each. Due to the heterogeneity of outcome
measures used in this review, it was not possible to perform a meta-
analysis on the data.

Caregiver characteristics
The mean age for caregivers (where available) was between 40 and
45 years of age. Caregiver ages varied geographically with older mean
ages noted in the USA16,17 and the UK27 and younger mean ages in
quality of life before intervention

India28 and Brazil.3 Similarly, the period of time devoted to caregiving

(when reported) varied from between 42 and 79 hours a week.2,3,29
in the intervention group

Interestingly, the two studies with the highest number of hours spent
caregiving2,3 also reporting close to 50% of caregivers being in
employment outside of the home. Additional caregiver characteristics,
including gender and relationship to care recipient, are presented in
Outcomes

Tables 1 and 2.

Quality of life of caregivers

The qualitative studies reviewed20–23 highlighted several common
Outcome measure

HADS, WHOQOL-

issues for SCI caregivers. These included fear, uncertainty and familial
BREF, GHQ-12

role changes that occur following SCI, as well as the impact these
changes have on the care recipients, caregivers and the wider family
(s) used

dynamic. Loss of identity was also reported to occur in line with role
changes, specifically with the perceived change from partner and lover
to carer.
The quantitative studies reviewed reported on a broad range of
Frequency of assessment

end ofintervention period

issues that affect caregiver QOL with higher than normal levels of
preassessmentand at
Outcomes measured

depression,19,24,27,28,30–32 anxiety,24,28,30,32 stress,25,27 distress,28,32 and

lower overall satisfaction with life5,28 reported. Mental health of
caregivers was found to be worse than that of care recipients in several
(2 weeks)

studies,27,33 with feelings of being overwhelmed by their role reported

by 68% of caregivers in one study.2 Specific factors such as poor
general health of care recipient33 and dysfunctional problem-solving
skills16,29 were linked to negative outcomes for carers.
ing a 'core topic' which were: introduction, group interaction, stresses in
Intervention based on 'RISEUP' programme with each session discuss-

Layout of sessions consist of 'warm-up', 'discussion of previous sessions'

life, problems faced and strategies employed, coping strategies, return
Intervention of 1 hsessions thrice weekly,totalling seven sessions over

home task', 'discussion on specific core topic', 'assignment of home

DISCUSSION
This literature review is the first of its kind to investigate the significant
issues affecting the QOL of primary family caregivers of people with
SCI. The review has identified a range of physical and psychological
stressors and pathologies that are suffered by primary caregivers when
a loved one is affected by SCI. These include depression, anxiety, poor
general health, relationship and financial pressures, stress and a lower
to community and revision and summary

overall satisfaction with life. A number of interventions have been

2 weeks vs control of no intervention

suggested as potentially useful in supporting primary caregivers, with

With Life Scale; QOL, Quality of Life; ZBI, Zarit Burden Interview.

early intervention by support services being particularly important.

The negative impact of caregiving on the QOL of the family
members involved in caring for loved ones with long-term pathology
task' and 'wind down'

has been documented for a variety of conditions including stroke,34

Type of intervention

cancer,35 multiple sclerosis10 and other chronic illnesses36 and conse-

Support groups

quently it is unsurprising that similar issues are identified in SCI.

There is a notable reduction in mental health with depression,29,30
anxiety,24,28 sleep disturbances37 and isolation2 identified as common
Table 4 (Continued )

themes reported for family caregivers of people with SCI. In addition,

SCI caregivers also frequently report pain3,5 and poor physical
health.3,27,33 This is likely due to the regular, often physical nature
Reference and

Manigandan24

of caregiving for people with SCI, with tasks such as assisting with
Sheija and

cleaning, dressing and toileting the SCI survivor along with perform-
country

ing rehabilitation exercises daily highlighted as being particularly

India

stressful and tiring.20 Performing intimate care (bladder and bowel

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 Impact of SCI on QOL of family caregivers—review
J Lynch and R Cahalan
974

Table 5 Outcome measures used ADDIN EN.REFLIST ADDIN

Outcome measure Construct measured Psychometric properties Description

BDI25 Depression High reliability, very good concurrent, content, and 21-Question scale, scored 0-3, total score 0-63, higher scores
structural validity59 indicate increased severity of depression

Brief Ways of Coping Coping Nil reported 30 Items, assessing five factors (self-confidence, optimistic, submis-
Questionnaire60 sive, helplessness, seeking social support strategies). Higher scores in
each factor demonstrate increased use of those coping strategies

CBI25 Caregiver burden Internal consistency reliability of each factor 0.85, 24-Item questionnaire, 5 sub-scales (time dependence, develop-
0.85, 0.86, 0.73 and 0.77, respectively61 mental, behaviour, physical burden, social burden), scored 0–4, total
score 0–48. Higher scores in each factor demonstrate increased use
of those coping strategies

CBS3,41 Caregiver burden Internal consistency of 0.87, correlation with depres- 22 Items grouped in five dimensions (general strain, isolation,
sive symptoms CES-D of 0.3862 disappointment, emotional involvement and environment), scored
0–4. Higher scores indicate increased burden experienced

CNQ2 Caregiver needs Nil reported Created for this study, 27 items in 9 categories (need for emotional
support, psychological support, economic support, rest, information,
improving physical health, support from the community, sleep,
maintaining the household) answered on 1–5 scale. Higher scores
indicate higher caregiver needs

CES-D19,27,32,42 Depression Adequate to excellent test–retest and inter-rater/ 20-Item scale, four sub-scales (depressive affect, well-bring, somatic
intra-rater reliability63 affect, inter-personal affect), total score 0–60. Higher scores indicate
greater depressive symptoms

GHQ-1224 Distress and mental Cronbach alpha coefficient is a range of 0.82–0.8664 12-Item scale, scored 0-3. Higher scores indicate poorer general
health issues health

HADS24,30,60 Anxiety and Adequate to excellent test–retest reliability, internal 14-Item scale, 7 for depression, 7 for anxiety, scored 0–3, total
depression consistency and construct validity65 score 0–21 for both categories. Higher scores indicate increased
depression/anxiety

ISEL-122 Social support Internal consistency and test–retest reliabilities range 12 Statements concerning perceived availability of potential social
from 0.70 to 0.80, with moderate inter-correlation2 resources, scored 1–4. Higher scores indicate perception that social
support easily available

IDD16,17,29 Depression Acceptable test–retest reliabilities (0.98) and internal 22 Item measure of depressive symptoms, scored 0–4, total score
consistency (0.92) coefficients have been reported16 0–88. Higher scores indicate increased despression

LSS28 Satisfaction with Alpha reliability of 0.9366 6 Items (psychological, educational, social, relaxational,
life physiological, aesthetic), scored 0–4. Higher scores indicate higher
levels of leisure satisfaction

LSI-A42 Satisfaction with Reliability analysis resulted in a Cronbach's alpha of 20-Item scale measuring life satisfaction, scored 0–1, total score
life 0.8442 0–20. Higher scores indicate increased life satisfaction.

LSI-Z27 Satisfaction with Internal consistency ranges from 0.79 to 0.90. Good 13-Item scale of morale or life satisfaction, scored 0–2, total score
life test retest reliability67 0–26. Higher scores indicate increased life satisfaction

PHQ-92,5 Depression Reliable and valid in recognising major depression and 9 ITEMS that reflect typical symptoms of depression, scored
sub-threshold depressive disorders in the general 0–3, total score 0–27. Higher scores indicate increased depression
population68

PILL32 Physical Symptoms Cronbach alphas range from 0.88 to 0.91 and 54-Item scale of physical symptoms, scored 0–4. Higher scores
2-month retest reliability ranges from 0.79 to 0.8369 indicate increased perception of physical symptoms

PSS27 Stress PSS is an easy-to-use questionnaire with established 14-Item measure of perceived stressfulness of life situations, scored
acceptable psychometric properties70 0–4, total score 0–56. Higher scores indicate increased stress

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975

Table 5 (Continued )

Outcome measure Construct measured Psychometric properties Description

PANAS32 Positive and Reliability and validity moderately good; strong 20-Item scale (10 positive, 10 negative), scored 1–5. Higher scores
negative affect reported validity with depression and state anxiety71 on each subset indicate higher levels of positive or negative affect
accordingly

PSR25 Social support Nil reported 15-Item instrument, 2 dimensions (family support, friend support).
Higher scores indicate better social support

QOL and Individual QOL Nil reported 15 Categories, each scored on 5 point scale. Higher scores indicate
Needs increased QOL
Questionnaire27

CIS-R28 Mental health The CIS-R has been shown to have high inter-rater 14 Sub-sections (somatic symptoms, fatigue, concentration, sleep
issues reliability28 problems, irritability, worry about physical health, depression,
depressive ideas, worry, anxiety, phobia, panic, obsessions and
compulsions), scored 0-4. Higher scores indicate higher levels of
mental health issues

RSES5 Self-Esteem High ratings in reliability areas; internal consistency 10-Item scale (5 positive, 5 negative), scored 0–3. Higher scores
was 0.77, minimum Coefficient of Reproducibility was indicate higher levels of self-esteem
at least 0.9072

SWLS2,5,17,25 Satisfaction with Psychometric studies of the SWLS have evidenced 5 Items of life satisfaction, scored 1–7 for each item,
Life internal consistency (0.87) and reliability (2-month total score 5–35. Higher scores indicate higher levels of life
test–retest coefficient 0.82)17 satisfaction

SF-363,16–18,26,29, QOL Substantial evidence supports the basic psychometric 35 Items grouped into eight dimensions (physical function, role
31,33,41,73 properties; internal consistency reliabilities have ran- function, bodily pain, vitality, general health, social function,
ged from 0.62 to 0.96; test–retest coefficients have emotional role, mental health), scored 0–100 with lower score
ranged from 0.43 to 0.9016 equating to higher disability

SPSI-R16,17,29 Problem-Solving SPSI has high reliability ranging from 0.72 to 0.8528 52-Item scale to assess social problem-solving abilities, scored 0–4.
Higher scores indicate greater problem-solving skills

STAI5,32 Anxiety Test–retest reliability coefficients ranged from 0.31 to 40 Items, divided into two sub-scales (state anxiety and trait anxiety),
0.86, internal consistency alpha coefficients ranged scored 0–3. Higher scores indicate greater anxiety
from 0.86 to 0.9574

VAS for QOL26 QOL Reliability and validity has been established for Straight line with opposing scores at either end
measuring subjective sensations, feelings, attitudes
and opinions26

WOC25 Coping Nil reported 59-Item scale divided into two sub-scales (positive and dysfunctional
skills), scored 0-3. Higher scores in each subscale indicate greater
levels of positive/dysfunctional coping accordingly

WHOQOL-BREF24,30 QOL WHOQOL-BREF has good to excellent psychometric 26 Questions forming 4 sub-domains (physical health, psychological
properties of reliability and per- forms well in health, social relationship and environmental health), scored 1–5.
preliminary tests of validity75 Higher scores indicate higher QOL

ZBI2,5,19 Caregiver Burden Excellent internal consistency, adequate criterion 22 Items asking about current situation, scored 0–4, total
validity76 score 0–88. Higher scores indicate increased levels of
burden

Abbreviations: BDI, Beck Depression Inventory; CBS, Carer Burden Scale; CBI, Caregiver Burden Inventory; CIS-R, Revised Clinical Interview Schedule; CES-D, Centre for Epidemiologic
Studies—Depression Scale; CNQ, Caregiver Needs Questionnaire; GHQ, General Health Questionnaire; HADS, Hospital Anxiety Depression Scale; IDD, Inventory to Diagnose Depression; ISEL, Inter-
personal Support Evaluation List; LSI-A, Life Satisfaction Index; LSS, Leisure Satisfaction Scale; PILL, Pennebaker Inventory of Limbic Languidness; PANAS, Positive and Negative Affect Schedule;
PHQ-9, Patient Health Questionnaire; PSR, Provision of Social Relationhip Scale; PSS, Perceived Stress Scale; QOL, Quality of Life; RSES, Rosenberg Self-Esteem Scale; SF-36, Short Form 36;
SPSI-R, Social Problem-Solving Inventory; STAI, State Trait Anxiety Inventory; SWLS, Satisfaction With Life Scale; VAS, Visual Analogue Scale; WOC, Ways of Coping Checklist; WHOQOL-BREF,
World Health Organisation Quality of Life-BREF; ZBI, Zarit Caregiver Burden Interview.

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 Impact of SCI on QOL of family caregivers—review
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976

management) for a loved one is also highlighted as being difficult for assisting the caregiver in their task of taking care of the SCI survivor,
both parties.23 with some of the lowest depression scores possibly indicating better
In SCI, the average age of caregivers is younger than that of QOL in these communities. In spite of this family support and reports
caregivers with other conditions37 despite the wide age ranges reported of better QOL, one Colombian study reviewed reported that 68% of
in most studies regarding caregiving. Average age for SCI caregivers is caregivers felt overwhelmed by their caregiver role.2 This contrasts
53 years old37 with average age of 60 years old for cancer caregivers,38 with reports from China and Taiwan25,21 which state that traditional
61.4 years for stroke,39 55.7 years for Parkinson’s disease40 and roles in Chinese/Taiwanese culture can play a significant part in
57.1–63.5 years for dementia caregivers.12 Younger people display caregiver QOL, with additional pressures from caregiving not
poorer strategies for dealing with mental health issues2 with higher perceived to impact on their normal social role within the family,
depression reported in younger caregivers.30 Given that the average age with potential discrimination from family members at perceptions of
of SCI caregivers is lower than that of other conditions, depression and carers not fulfilling their duties. Studies in Asia show high levels of
poor coping strategies are particularly problematic for SCI caregivers. unemployment/retirement among family caregivers,18,25,30,31,33 while
In addition, it has been reported that there is an increased risk of studies in the USA26 report families employing paid care in addition to
hypertension, obesity and cardiovascular disease in SCI caregivers family caregiving, which may facilitate the higher rates of employment
compared to other neurological conditions.37,41 One study5 stated that noted in USA19 and less risk of physical health issues for the family
lower pain levels in SCI survivors resulted in increased burden, anxiety caregivers. However, concern has been raised in the literature,
and depression for caregivers. The authors qualified this seemingly regarding the perceived poor level of care offered by paid caregivers
counter-intuitive outcome by stating that those survivors with SCI compared with the attention and care provided by family members,23
who had low levels of pain were more likely to be outgoing, active and with formal caregivers considered less likely to go ‘above and beyond’
therefore demanding of their caregivers. However, the majority of the contracted duties of their employment.46
studies addressing severity of injury highlight this issue as a factor that Due to the high level of spousal caregiving with SCI, changes in role
may negatively impact upon caregiver QOL with greater depression identity are reported with loss of intimacy and sexual relations a
noted in caregivers of more severely injured.28 Lower satisfaction with commonly reported theme.21,22 A more maternal role develops for a
life was reported for caregivers with increased hours caregiving and female spouse caring for her male partner.22 Further role change is
assistance needed for activities of daily living (ADLs).42 Caregivers of reported with a high incidence of caregivers being unemployed/retired
tetraplegics are identified as particularly at risk, scoring lower on all
and those who remain in employment often appear to be working
domains of SF36 in one study.18 Conversely, better physical function-
reduced hours, likely due to the demands placed upon them as
ing and general health in SCI survivors related to better mental
caregivers. Often caregivers are forced to leave paid employment due
health33 and QOL in the caregiver.5 This highlights an additional level
to their new role as caregivers,21 frequently resulting in financial
of complexity in the SCI survivor-caregiver relationship within the
difficulties for the family involved. Financial difficulties are a common
family.
issue in the literature, with caregivers for people with dementia,47
Another feature of SCI caregiving that is shared with other
Alzheimer’s disease,48 cancer,49 motor neurone disease50 and
conditions including stroke43 and chronic illness36 is that the vast
Parkinson’s disease51 all reporting financial concerns as a cause of
majority of SCI caregivers are females and either spouses or parents.
distress, highlighting an additional factor that negatively impacts on
The duration of caregiving for SCI has been reported as being up to
caregiver mental health.
five decades44 which is uncommon with many other conditions and
Need for support is a common issue highlighted in caregiver
highlights the ongoing, long-term demands placed on caregivers.
Longer duration of caregiving is associated with poorer QOL for MS research and it comes as no surprise that this is also the case for SCI.
caregivers,45 which is also reported to be an issue for SCI caregivers,31 Support groups have been reported to be beneficial for caregiver
again highlighting the similarities in issues faced by long-term mental health in a variety of conditions including SCI,18,19 Parkinson’s
caregivers as a whole, regardless of the condition of the care-receiver. Disease52 and the frail elderly.53 Similarly, in the last decade the use of
The qualitative studies reviewed provide important insights into technology (for example, telephone support, online support, websites)
several implications of assuming the caregiver role. All studies has been explored across a significant range of conditions with varying
emphasise the significant amount of negative features associated with success reported. A systematic review of the impact of telehealth on
the role including the loss of identity felt by the caregiver20,22,23 supporting caregivers over an extremely broad range of impairments
coupled with profound role changes between the SCI survivor and reported positively on the impact telehealth can have on caregiver
caregiver.21,22 The caregiver’s life outside of the caregiving relationship education and support.54 However, contrasting reports on the benefits
was also adversely affected with social isolation, loneliness and a lack of telehealth exist; it has been shown to reduce anxiety and depression
of spontaneity all common themes.20–23 An overwhelming sadness is in caregivers of the frail elderly53 but the benefits on caregiver
also commonly reported in the included studies due to the irreversible depression and life satisfaction in stroke caregivers has been reported
change in their life circumstances.23 Although faith/religious beliefs as unclear.55 Inconclusive findings have also been reported with SCI
were often mentioned as a source of strength, in one instance the caregivers, although this was perhaps due to methodological weakness
subject believed that his family member’s disability was related to sins (loss of participants to follow-up) in the study.17 Another support
committed in a previous life, and this belief was the source of structure explored in the literature is problem-solving training, which
distress.21 An additional theme commonly mentioned was frustration has been assessed for caregiver support for SCI,16 stroke56,57 and
with paid caregivers,20,23 and the difficulty involved with performing chronic pain in youths58 and has mixed reports of benefit, with the
intimate care tasks including bathing and toileting.20,22 greatest success reported for parents of youths with chronic pain.
This review captures data from diverse geographical locations, and An additional concept explored for SCI is joint education sessions with
this is worthy of further discussion. Cultural differences significantly the SCI caregiver and recipient which show significant benefits to both
impact upon QOL outcomes for caregivers. Research from Latin parties19 and could be an option for further research across a variety of
America2,3,5 highlights the important role family support has with conditions.

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 Impact of SCI on QOL of family caregivers—review
J Lynch and R Cahalan
977

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