Introduction

Spinal cord injury (SCI) is a life-altering condition that significantly impacts upon the person affected, immediately altering their daily life, independence and role within their family and society.1 In certain instances, SCI may render a person dependent on caregivers, with family members often forced to take on the role for a variety of social and economic reasons.2, 3 Costs associated with SCI are higher than those of comparable conditions such as dementia, multiple sclerosis and cerebral palsy,1 with annual healthcare and living expenses incurred approximating US$185 000 in some cases.4 This financial burden in addition to any income forgone by the patient can have a significant effect on the entire family unit.5

The World Health Organisation (WHO) describes quality of life (QOL) ‘as an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment’.6 Within this broad definition are important areas including satisfaction with life, self-esteem, pain and mood. As such, QOL can be perceived as poor in certain domains and acceptable or good in others. The complexity of such a concept has resulted in a plethora of approaches to measuring QOL. In this study, QOL will focus on aspects including mental and physical health and life satisfaction.

There is much published evidence to highlight the impact of caregiving on the QOL of family members caring for people with a variety of conditions including cancer,7 stroke,8 traumatic brain injury,9 multiple sclerosis,10 Parkinson’s disease,11 dementia12 and palliative conditions13 with common themes of increased anxiety, depression, burden and lower satisfaction with life frequently reported. The aim of this study is to review the published literature regarding the impact of SCI on the QOL of family caregivers, to highlight common themes addressed, to discuss outcome measures used and suggest possible interventions.

Materials and methods

Search strategy

In November 2016, a detailed search of electronic databases Medline, Amed, Cinahl Plus, SportDiscus, PsycArticles, PsycInfo, Embase, ScienceDirect, Pedro and Cochrane Library was conducted for published, peer-reviewed journals from 1979 to the present. The search terms applied were ‘spinal cord inj*’ AND ‘care*’ AND ‘family’ OR ‘spouse’. Results were screened for relevance and reference lists of accepted studies were also searched.

Inclusion and exclusion criteria

Inclusion criteria

  • Family members who are primary caregivers of adult (18 years+) SCI survivors.

  • Studies assessing QOL or life satisfaction of caregiver.

  • Peer-reviewed, published journals from 1979 to present.

  • English language full text available.

Exclusion criteria

  • Unable to isolate SCI data from other conditions (for example, traumatic brain injury).

  • Studies featuring non-family carers.

  • Non-peer-reviewed, published articles, case studies or conference presentations.

Assessment of methodological quality

Methodological quality was assessed using the Oxford Centre for Evidence–Based Medicine levels of evidence guidelines14 for the quantitative studies and using the recommendations described by Anderson15 for the qualitative studies.

Results

The database searches yielded 1147 studies, which after screening of abstracts and application of inclusion/exclusion criteria resulted in 22 studies being included for this review (Figure 1). The most common reasons for exclusion were studies containing non-family carers, studies containing a combination of conditions (not exclusively SCI) and non-published studies. Three additional studies were identified from the reference lists of the initial search results, giving a total of 25 studies reviewed, four of which were qualitative in nature (Table 1) and 21 of which contained quantitative data (Table 2).

Figure 1
figure 1

Flow chart of study selection procedure. A full color version of this figure is available at the Spinal Cord journal online.

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Table 1 Qualitative studies focussing on SCI family caregivers’ experiences
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Table 2 Quantitative studies focussing on SCI family caregivers' experiences
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Quality of studies

Under the Oxford Centre for Evidence–Based Medicine Levels of Evidence system, the majority of studies reviewed were considered level 3 studies consisting of cross-sectional studies (with inconsistently applied reference standard and blinding), often with non-randomized samples and small sample sizes. There were four level 2 studies reviewed—all of which were randomised controlled trials,16, 17, 18, 19 but these studies had a number of inherent weaknesses including small study cohorts and inconsistent description of processes involved18 in addition to poor completion rate.17 All of the qualitative studies20, 21, 22, 23 give explicit descriptors of the subjects involved, the recruitment process, and the methodology used to transcribe, synthesise and analyse data. All studies consistently use direct quotations from the subjects throughout the results and discussion sections to support themes identified and emphasise the importance of the results identified in the work. Three of the studies20, 22, 23 also highlight potential limitations to their research—specifically in recruitment of subjects20, 22 and small sample sizes.21, 22, 23 Despite the potential biases, the qualitative studies ensure the results are relevant through detailed description of the processes involved, use of experienced investigators and thorough recording and analysis of the interviews and provide additional insight into the challenges the family caregiver faces that are 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.

Table 3 Evaulating qualitative studies (Anderson15)
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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, 17, 18, 19, 24, 25, 26 Also, that there may be some potential for tele-health16, 17 and community based support2 to help assist caregivers on an ongoing basis.

Table 4 Types of intervention and outcomes achieved
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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 broad range of domains including physical and mental health, and this is reflected in the diversity of outcome measures used by the studies in the current review. Table 5 provides further detail on the construct or area measured by each outcome measure, as well as the associated 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.

Table 5 Outcome measures used ADDIN EN.REFLIST ADDIN
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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 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 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 Tables 1 and 2.

Quality of life of caregivers

The qualitative studies reviewed20, 21, 22, 23 highlighted several common issues for SCI caregivers. These included fear, uncertainty and familial role changes that occur following SCI, as well as the impact these changes have on the care recipients, caregivers and the wider family 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 issues that affect caregiver QOL with higher than normal levels of depression,19, 24, 27, 28, 30, 31, 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 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.

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 overall satisfaction with life. A number of interventions have been suggested as potentially useful in supporting primary caregivers, with 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 has been documented for a variety of conditions including stroke,34 cancer,35 multiple sclerosis10 and other chronic illnesses36 and consequently 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 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 of caregiving for people with SCI, with tasks such as assisting with cleaning, dressing and toileting the SCI survivor along with performing rehabilitation exercises daily highlighted as being particularly stressful and tiring.20 Performing intimate care (bladder and bowel management) for a loved one is also highlighted as being difficult for both parties.23

In SCI, the average age of caregivers is younger than that of caregivers with other conditions37 despite the wide age ranges reported in most studies regarding caregiving. Average age for SCI caregivers is 53 years old37 with average age of 60 years old for cancer caregivers,38 61.4 years for stroke,39 55.7 years for Parkinson’s disease40 and 57.1–63.5 years for dementia caregivers.12 Younger people display poorer strategies for dealing with mental health issues2 with higher depression reported in younger caregivers.30 Given that the average age of SCI caregivers is lower than that of other conditions, depression and poor coping strategies are particularly problematic for SCI caregivers. In addition, it has been reported that there is an increased risk of hypertension, obesity and cardiovascular disease in SCI caregivers compared to other neurological conditions.37, 41 One study5 stated that lower pain levels in SCI survivors resulted in increased burden, anxiety and depression for caregivers. The authors qualified this seemingly counter-intuitive outcome by stating that those survivors with SCI who had low levels of pain were more likely to be outgoing, active and therefore demanding of their caregivers. However, the majority of studies addressing severity of injury highlight this issue as a factor that may negatively impact upon caregiver QOL with greater depression noted in caregivers of more severely injured.28 Lower satisfaction with life was reported for caregivers with increased hours caregiving and assistance needed for activities of daily living (ADLs).42 Caregivers of tetraplegics are identified as particularly at risk, scoring lower on all domains of SF36 in one study.18 Conversely, better physical functioning and general health in SCI survivors related to better mental health33 and QOL in the caregiver.5 This highlights an additional level of complexity in the SCI survivor-caregiver relationship within the family.

Another feature of SCI caregiving that is shared with other conditions including stroke43 and chronic illness36 is that the vast majority of SCI caregivers are females and either spouses or parents. The duration of caregiving for SCI has been reported as being up to five decades44 which is uncommon with many other conditions and highlights the ongoing, long-term demands placed on caregivers. Longer duration of caregiving is associated with poorer QOL for MS caregivers,45 which is also reported to be an issue for SCI caregivers,31 again highlighting the similarities in issues faced by long-term caregivers as a whole, regardless of the condition of the care-receiver.

The qualitative studies reviewed provide important insights into several implications of assuming the caregiver role. All studies emphasise the significant amount of negative features associated with the role including the loss of identity felt by the caregiver20, 22, 23 coupled with profound role changes between the SCI survivor and caregiver.21, 22 The caregiver’s life outside of the caregiving relationship was also adversely affected with social isolation, loneliness and a lack of spontaneity all common themes.20, 21, 22, 23 An overwhelming sadness is also commonly reported in the included studies due to the irreversible change in their life circumstances.23 Although faith/religious beliefs were often mentioned as a source of strength, in one instance the subject believed that his family member’s disability was related to sins committed in a previous life, and this belief was the source of distress.21 An additional theme commonly mentioned was frustration with paid caregivers,20, 23 and the difficulty involved with performing intimate care tasks including bathing and toileting.20, 22

This review captures data from diverse geographical locations, and this is worthy of further discussion. Cultural differences significantly impact upon QOL outcomes for caregivers. Research from Latin America2, 3, 5 highlights the important role family support has with assisting the caregiver in their task of taking care of the SCI survivor, with some of the lowest depression scores possibly indicating better QOL in these communities. In spite of this family support and reports of better QOL, one Colombian study reviewed reported that 68% of caregivers felt overwhelmed by their caregiver role.2 This contrasts with reports from China and Taiwan25, 21 which state that traditional roles in Chinese/Taiwanese culture can play a significant part in caregiver QOL, with additional pressures from caregiving not perceived to impact on their normal social role within the family, with potential discrimination from family members at perceptions of carers not fulfilling their duties. Studies in Asia show high levels of unemployment/retirement among family caregivers,18, 25, 30, 31, 33 while studies in the USA26 report families employing paid care in addition to family caregiving, which may facilitate the higher rates of employment noted in USA19 and less risk of physical health issues for the family caregivers. However, concern has been raised in the literature, regarding the perceived poor level of care offered by paid caregivers compared with the attention and care provided by family members,23 with formal caregivers considered less likely to go ‘above and beyond’ the contracted duties of their employment.46

Due to the high level of spousal caregiving with SCI, changes in role identity are reported with loss of intimacy and sexual relations a commonly reported theme.21, 22 A more maternal role develops for a female spouse caring for her male partner.22 Further role change is reported with a high incidence of caregivers being unemployed/retired and those who remain in employment often appear to be working reduced hours, likely due to the demands placed upon them as caregivers. Often caregivers are forced to leave paid employment due to their new role as caregivers,21 frequently resulting in financial difficulties for the family involved. Financial difficulties are a common issue in the literature, with caregivers for people with dementia,47 Alzheimer’s disease,48 cancer,49 motor neurone disease50 and Parkinson’s disease51 all reporting financial concerns as a cause of distress, highlighting an additional factor that negatively impacts on caregiver mental health.

Need for support is a common issue highlighted in caregiver research and it comes as no surprise that this is also the case for SCI. Support groups have been reported to be beneficial for caregiver mental health in a variety of conditions including SCI,18, 19 Parkinson’s Disease52 and the frail elderly.53 Similarly, in the last decade the use of technology (for example, telephone support, online support, websites) has been explored across a significant range of conditions with varying success reported. A systematic review of the impact of telehealth on supporting caregivers over an extremely broad range of impairments reported positively on the impact telehealth can have on caregiver education and support.54 However, contrasting reports on the benefits of telehealth exist; it has been shown to reduce anxiety and depression in caregivers of the frail elderly53 but the benefits on caregiver depression and life satisfaction in stroke caregivers has been reported as unclear.55 Inconclusive findings have also been reported with SCI caregivers, although this was perhaps due to methodological weakness (loss of participants to follow-up) in the study.17 Another support structure explored in the literature is problem-solving training, which has been assessed for caregiver support for SCI,16 stroke56, 57 and chronic pain in youths58 and has mixed reports of benefit, with the greatest success reported for parents of youths with chronic pain. An additional concept explored for SCI is joint education sessions with the SCI caregiver and recipient which show significant benefits to both parties19 and could be an option for further research across a variety of conditions.

Limitations of this review

The main limitation of this study is the quality of the available studies, which were largely mainly level 3 cross-sectional trials. The randomised controlled trials included suffered from high levels of attritional bias due to loss of contact with subjects at follow-up date. In spite of these issues, the number of studies worldwide reporting the difficulties faced by SCI caregivers emphasise the significance of this area of research and the limitations mentioned serve to highlight the need for high-quality research to be carried out on this important, international topic. In addition, QOL is a broad term encompassing a large variety of physical, mental and societal issues. As such, it is difficult to quantify, and drawing clear comparisons between findings is challenging, especially given the wide variety of outcome measures used across the literature. Finally, studies not specifically addressing QOL or satisfaction with life (for example, studies focusing on caregiver burden, coping, resilience and marital relationships) were omitted but may prove an additionally useful source of information regarding the impact of SCI on family caregivers.

Conclusion

This literature review is the first to examine the impact of SCI on family members who become primary caregivers. The research highlights the considerable impact that SCI has on the family unit with many carers enduring a broad range of physical and mental health issues. Typically, carers assume their roles in early-middle age and may persist as primary carers for several decades. This review has found the caregiver role to precipitate significant negative consequences including physical pain, depression, anxiety and sorrow. In addition, psychosocial issues including increased social isolation, loss of identity and role changes may also occur when the caregiving role commences. The studies reviewed highlight that these findings are reproduced internationally, notwithstanding elements of cultural diversity. The need for greater family involvement and support in the management of SCI from the onset is crucial, with the evidence advocating for educational interventions and support groups as the most effective intervention strategies, particularly when emphasis is placed on education for both the SCI survivor and caregiver. However, there is a lack of clarity regarding the optimum mix of elements composing such educational programmes. This review recommends that further, high-quality research is needed to contribute to this clinical area in order to develop successful interventions and strategies to support both the SCI survivor and their family. Specific focus on the use of appropriate, psychometrically tested outcome measures would add to the available evidence. Given the global nature of this issue, multi-centred randomised controlled trials may provide meaningful information as to how to best address this issue.

Data archiving

There were no data to deposit.