Subjectivity

From a poststructuralist perspective, subjectivity is composed of the conscious and unconscious thoughts of an individual, their sense of self, and the ways individuals understand their relation to the world.7 In New Zealand, Sullivan1 has found the relationship between body and self is central to paraplegic subjectivity.

Subjectivity and rehabilitation

After SCI, areas of the person with SCI's body not paralysed, must be strengthened through physiotherapy in order for the individual to perform activities of daily living (eg, to transfer from wheelchair to bed/car and to push the wheelchair around). This is a necessary and vital component of rehabilitation. However, an earlier study of paraplegic rehabilitation found that some participants complained that attention to the body and physical strength was overemphasised at the expense of their psychological and emotional rehabilitation.1 Furthermore, emphasis on the process of physical rehabilitation resulted in the production of a particular form of identity and subjectivity reflecting the mechanical intervention and attention to detail one must now pay to his/her body.1 8

Body and self

The relationship between body and self is vitally important for the SCI person in terms of morbidity and their subjective wellbeing.1 First, the self must learn new techniques of body management if it is to survive by avoiding urinary tract infection, pressure areas, managing incontinence and, in some cases, nerve pain and excessive sweating. In terms of mortality, the international literature shows that urinary tract infection and related problems are no longer causing the mortality rates they once did. Now respiratory complications, especially pneumonia, are the leading cause of death after SCI, followed by heart disease, septicaemia and diseases of pulmonary circulation.9 10 However, normal social functioning post-injury is dependent upon the maintenance of skin integrity, a healthy urinary system and the management of incontinence.1

Furthermore, aspects of physical health status have been found to relate to psychosocial and life satisfaction outcomes. Putzke et al11 showed that mobility and perceived health are the best predictors of life satisfaction 2 years after SCI. Having poorer perceived health, more medical complications, episodes of rehospitalisation and greater ‘handicap and impairment’ were all associated with lower life satisfaction at year 2 post SCI.11

Alcohol and substance abuse

Internationally, a substantial proportion of people exhibit patterns of over-consumption of alcohol after SCI.12 Those who drink post-SCI are unlikely to be ‘light’ or social drinkers.13 This is consistent with the findings of the one New Zealand study on paraplegic individuals that showed a majority exhibiting a pattern of an initial increase in alcohol consumption followed by a decline to lower than pre-injury consumption.1 Patterns of alcohol and substance abuse among people with SCI have been found to relate to demographic and injury-related characteristics, with those at risk likely to be younger, single, male, less educated and reporting more pain and less satisfaction with life.14 Alcohol abuse has also been linked to depression, anger, an increased risk of urinary tract infection, an increased rate of pressure ulcers and re-injury.15–17

Psychological wellbeing and life satisfaction

A review of the literature on depression and anxiety following SCI found that depression is not an inevitable reaction to injury, nor is a necessary facet of rehabilitation as proposed by stage theorists.18 Other evidence also suggests that, while anxiety and depression may be more prevalent in individuals who have sustained SCI compared with the general population, psychological morbidity is not an inevitable consequence of SCI.19–23

Internationally, researchers have investigated relationships between SCI and psychological outcomes including overall life satisfaction. In a longitudinal study of patients from acute stages of hospitalisation to 2 years post-discharge, Kennedy and Rogers18 found that the longer people remained in hospital, the more depressed and anxious they became. Post et al24 found that the level of injury was not a good predictor of subjective wellbeing or life satisfaction but that social and psychological functioning were. Other studies have found limitations to peoples' mobility,25 26 social support systems,27 28 access to the environment27 and occupational roles26 29 30 are associated with reduced life satisfaction. Other predictors of decreased life satisfaction include negative mood states, particularly depressive symptoms,24 28 perceived increased stressors31 and perceived poor control.26 32

Sex and ethnicity

Internationally, studies have also identified relationships between sex, ethnicity and SCI outcomes. Putzke et al11 found that being male and non-white were associated with lower life satisfaction 2 years after SCI. Krause and Broderick33 found subjective wellbeing to be more closely (negatively) linked to ethnicity than sex in terms of employment and income but not in matters of health. Women have been found to be more comfortable with interpersonal relationships after SCI.33

Social networks

Social networks consist of formal and informal networks in which important persons, objects and activities meet.34 Social support has an impact on health and how people rate their health depends upon their perception of social support from the social network.35 Research shows that social networks change substantially following SCI in relation to employment, friends and family.1 35–38 While the loss of some relationships was disappointing, women in one study described this as natural,35 while participants in other studies preferred to lose some relationships as this showed them who their ‘true friends’ were.1 Notwithstanding, the avoidance of friends can be very hurtful and can cause some people with SCI to withdraw socially.39 Whiteneck et al40 posit that losing friends and family after disability can produce greater social isolation than lack of access to other environmental resources. In contradistinction, friendships that remained after SCI often improved mainly because they were meaningful and worthwhile to keep.35 In the one New Zealand study on paraplegic individuals,1 most participants reported the value of family and the peer support of other people with SCI; a number had established new and positive relations with the wider disability community.

Marriage, partnerships and parenting

SCI does not just affect the individual concerned but the people in the relationships and social networks in which s/he is embedded. Internationally, the divorce rate has been found to be 2.3 times higher for people with SCI, in the first 3 years after the injury, compared with the general population.41 42 However, in the first year after injury married individuals adjusted better than their single counterparts in terms of social integration, economic self-sufficiency and reported a significantly higher quality of life.24 43 Being married is a powerful predictor of adjustment and quality of life.44 45 However, being a partner and support to someone who has experienced a SCI is not unproblematical. It may involve dealing with new personal and social relationships and accommodating economic restraint.46 47 Partners of people with complete tetraplegia (who are dependent on assistance for personal care) are most at risk of burnout. Monitoring caregiver burden in these situations is a legitimate part of life-long surveillance for persons with SCI.45 Possibly linked to the burden of care falling on men who are not socialised into the caring role48 is the finding that women with SCI are more likely than men to become divorced after marriages that predate the injury, but less likely to become divorced after post-injury marriages.41 42 Studies also show higher levels of both marital satisfaction and adjustment and identified fewer problem areas among persons with post-injury marriages.49 50 Studies into the impact of SCI on parenting show no empirical basis for believing that SCI has a deleterious effect on the ability to parent, parenting satisfaction, parenting stress, family functioning, or children's adjustment.51–53

Sexuality

Both men and women have been found to report loss of self-esteem and sense of attractiveness as a sexual partner as a result of SCI.1 54 55 Male sexuality after SCI, particularly erectile dysfunction1 56 and infertility,1 57 58 has been studied more than female sexuality.54 55 Sullivan1 reported that male subjectivity suffered as a result of SCI with men feeling devalued as men as a result of erectile dysfunction and their inability to father children; all grieved the loss of sensation. Similarly, women with SCI report grief around the loss of sensation, orgasm and sexual ability.54 55 Women also report that they received insufficient or no information about post-injury sexuality during their rehabilitation.59 However, and notwithstanding a noticeable decrease in the frequency of intercourse, the majority of women reported having an active, satisfying sexual life.54 59

Socioeconomic factors

From the social model of disability, research shows that the most important factors for social functioning, not related to the degree of impairment, are adequate housing, home support, self-care equipment, transportation, paid employment and worthwhile leisure activities.24 Research clearly shows that the degree of control or access an individual perceives they have over resources, such as transportation and life opportunities, are the best predictors of positive outcomes in terms of health, wellbeing and social functioning.60 Having paid employment is an important factor in the health and wellbeing of SCI people, with those unemployed having twice the risk of mortality than the employed.60 61

All people who have a SCI in New Zealand have the advantage of specialised rehabilitation services in spinal units—whether their SCI was caused by an injury or illness. Nevertheless, the socioeconomic support available when they leave the units varies markedly. Those who are eligible for full accident compensation (from ACC—a no-fault accident insurance provided by the state to New Zealand citizens and visitors) potentially receive a lump sum payment, earnings-related compensation (ERC), housing and home alterations, transport (modified motor vehicle) aides and appliances, vocational support and personal assistance. If people were in regular paid employment before their SCI, ERC provides up to 80% of their pre-injury wages until they are fit to return to paid employment. Those not covered by ACC are left to the more restrictive, less generous and less timely support through the Ministry of Health. This latter group includes those who are not eligible for ACC because they had an injury overseas or because their impairment is due to a disease process.

We know of no formal comparisons of outcomes between those covered and not covered by ACC, although a qualitative study of amputees is underway (P. Howden-Chapman, personal communication in 2006). More generally, the progression of chronic disorders is influenced by socioeconomic factors as well as by the degree of impairment. Low socioeconomic status has been shown to predict worse functional outcomes for conditions such as asthma/chronic obstructive pulmonary disease, heart disease, diabetes and low back pain and also to predict shorter life expectancy from cancer.62 63 Ethnic disparities in survival from cancer may also reflect socioeconomic differences.64 An implication of these observations is that part of the social inequalities in chronic disorders may be due to differences in the course of these disorders. This combines with the already established pathways—from poor socioeconomic conditions to ill health and from poor health to impoverishment—to increase the concentration of people with severe chronic conditions in low socioeconomic groups. The latter pathways are clear enough, but the pathways by which social conditions affect the course of chronic conditions is much less clear—although risk behaviours such as smoking and alcohol may play a part.65

Group meeting with Burwood Hospital stakeholders

In developing this study we have been in close contact with the (then) clinical director and research nurse of the Burwood Spinal Unit (BSU), Ranga Hauroa (Māori Health Services Burwood Hospital), manager of the Burwood Academy of Independent Living (an independent research and learning facility devoted to the independent living and the new rehabilitation of SCI) and the chief executive of New Zealand Spinal Trust and BSU consumers group. An important aim of this study is to use it as a vehicle to build research capacity within the SCI population and our wish to carry out this research in partnership with these stakeholder groups, and former patients of BSU (Peina Tamou and Carolyn Beaver), is part of the research team. In addition to recruiting participants they will administer the 4-month baseline interviews, the 12 and 24-month telephone interviews and do the data entry.

Staff from Ranga Hauora expressed concern about so little being known about what happens to Māori following SCI, with anecdotal evidence suggesting that Māori are not receiving the services they should in a timely and appropriate manner. Peina Tamou will provide cultural advice to the team.

When discussing the timing of the qualitative interviews, the Burwood Academy of Independent Living manager suggested 6 months post-discharge was a good time for the first interview, as by this time participants would have completed the transition from spinal unit to home and would be focused on what they wanted to do with the rest of their lives. We have adopted this timing. The research nurse has since provided us with demographic data on admissions to the BSU over the past 3 years.

Group meeting with Auckland Spinal Rehabilitation Unit

The clinical director of Auckland Spinal Rehabilitation Unit (ASRU) has expressed support for this study from its inception. A meeting was subsequently held with the director, operations manager and counsellor at the ASRU to brief them on developments and to receive their input. We were advised that by 2 years post-injury participants will know how much neurological recovery they are going to achieve, and that this can be a significant time for them. We agreed that 18 months post-discharge would thus be a good time to have the second qualitative interview. The operations manager has since supplied demographic data to the team on acute admissions to ASRU over the past 3 years.

Meeting with the Association for Spinal Concerns

The Association for Spinal Concerns (TASC) is the consumer group at the ASRU that runs a buddy programme, holds weekly seminars on different aspects of SCI and provides advice and advocacy. Martin and Charlotte have met TASC and covered much of the same ground covered with the Burwood stakeholder groups. TASC supports the study and has since nominated Pam Fergusson as the contact person at ASRU. Apart from data entry, Pam will have the same role at ASRU as Peina does at BSU.

Focus groups with New Zealanders with SCI

In addition to the above in-person consultation (followed up with further telephone and email communications) to ensure the proposed project would provide results of importance to people with SCI, to Māori with SCI and to the two SCI rehabilitation units within New Zealand. We are undertaking consultation meetings with people with SCI. The purpose of these meetings is to ensure further that the proposed questionnaire (developed from the factors suggested by the literature and the factors identified at the consultation meetings at the two spinal units) includes the key factors of importance to people with SCI. These meetings will have occurred before the 1 July 2007 start date for the main study.

Baseline and outcome variables

Figure 2 indicates key relationships being explored in the quantitative component of the study. We are interested in the relationships between the income, health and social support and socioeconomic and health and other outcomes 2 years after SCI in New Zealand. The specific baseline and outcome measures to be used for pre-injury variables are: self efficacy,71 chronic illness or injury,72 demographics,72 alcohol and illicit drug use (modified short-form AUDIT+),73 paid employment, unpaid activities, income and education.72 The variables relating to injury are cause and severity,74 whereas post-injury variables are: mood (PANAS),75 alcohol and substance use,73 health status (EQ-5D, global health and health transition questions SF-36),76–80 WHO measure of disability,81 environment (CHIEF),82–84 pain (EQ-5D),76 77 functioning,85 86 paid employment, unpaid activities, income, ACC eligibility and education,72 satisfaction with health and social services including ACC.

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Figure 2

Predicted pathways from spinal cord damage to outcomes.

The SCI study provides an ideal opportunity to examine the relationships between these factors as participants will receive varying levels of income and other supports (eg, home help or transportation). Some participants will receive the full ACC package of support including ERC and lump-sum payments from ACC. However, other participants will receive more limited ACC support because they were students, or otherwise not in paid employment, at the time of their injury and therefore not eligible for ERC. A third group will have either had their SCI while living overseas or their spinal cause damage resulted from disease rather than injury, and therefore are not be eligible for ACC. As indicated, we will explore the relationships between baseline characteristics (pre-injury and immediate post-injury variables collected 4 months after SCI) and outcome (at 12 and 24 months) within and between these SCI groups.

Data analysis

The main purpose of this study is to describe this population and what happens to them. The primary analysis will thus involve the presentation of descriptive statistics at each of the follow-up points. Differences between adjacent follow-up periods will be tested by paired t tests or McNemar tests, depending on the level of measurement of the variable involved. More complicated models such as multiple regression will be used to look for relationships within the data collected at each follow-up time. Mixed models will be used to model data collected at more than one period to allow for the longitudinal nature of the data.

Sample size and power

The main purpose of the study is to describe this population. Ninety or more measurements at each follow-up period should be enough to give stable estimates of means and standard deviations (or medians and interquartile ranges if necessary). Estimates of proportions will be less precise with CI of, at worst, 18 percentage points wide. Multiple linear regression at each time point would be able to provide stable estimates of the relationships of up to nine variables simultaneously. The number of variables able to be accommodated for multiple logistic regressions will be less, depending on the frequency of the outcome. Using data from more than one time period will either provide more precise estimates or allow for more variables to be included.

Potential sources of bias and confounding

This longitudinal SCI study is an attempt at a census—not a sample. Therefore, the only problematical source of bias is non-response. We have made every attempt to ensure that non-response will be as small as possible. We will collect information on all domains known to be related to outcome in SCI patients, so should be able to assess confounding and adjust for it if necessary.

Generalisability

The information collected should be relevant to people with SCI in New Zealand who have had their injury in years other than those for which data will be collected, as we expect change would be incremental. While many of the circumstances (eg, ACC) will be unique to New Zealand we would expect that some of the relationships will be generalisable to people with SCI outside New Zealand.