Background Approximately 70–80 New Zealanders have spinal cord impairment (SCI) due to injury (2/3) or disease (1/3) each year. They had been socialised as non-disabled people. Following paralysis, interrelationships between body, self and society change. Little is known of the impact of these changes on life histories, life chances and life choices of people with SCI. This has negative implications for the design of rehabilitation and disability support services in New Zealand. Furthermore, the trajectory of disability is affected by previous socioeconomic conditions. How specific supports following SCI (eg, rehabilitation and compensation funded by the Accident Compensation Corporation; ACC) can change this trajectory is unknown.
Objectives To explore the interrelationships of body, self and society for people with SCI and how these have shaped life chances, life choices and subjectivity. To investigate how entitlement to rehabilitation and compensation through ACC affects socioeconomic and health outcomes.
Setting New Zealand.
Design A prospective cohort study; mixed methods.
Participants 112 people with SCI admitted for the first time to one of New Zealand's two spinal units without serious cognitive injury.
Data Structured interviews with all participants (n=112); qualitative interviews with a selected subgroup (n=20); clinical data collected at the time of admission. Exposures include: demographics, comorbidity, previoius health and socioeconomic status, SCI resulting from illness or injury, income support, health and social services.
Outcome measures Socioeconomic status, health, participation and life satisfaction.
Analysis Descriptive statistics; differences tested by paired t tests or McNemar tests; multiple regression and mixed models. Qualitative analysis will be interpretive.
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Each year, 70–80 New Zealanders have a traumatic spinal cord injury/impairment (SCI) resulting in varying degrees of paralysis. For two-thirds of these people the SCI is caused by injury; for the others the SCI is caused by illness (eg, a tumour; Rick Acland, personal communication, 2006). People with SCI had previously been socialised as non-disabled people and lived and experienced unimpaired bodies. They had been perceived and accepted socially as ‘normal’, able-bodied individuals, and had had the life expectations of normal, able-bodied people. Following paralysis these interrelationships between body, self and society change radically.
With loss of sensation and function individuals are constantly forced to monitor their body for harm below the SCI and to institute regimes of care and manage incontinence. Sexual function and reproductive capability is impaired at best. SCI means a loss of movement for most people whereby they can no longer stand, walk or deploy their bodies as they formerly did. In the wider social context their bodies are seen as disabled and the individual is now perceived as a disabled person with all the negative and limiting connotations this implies.
Internationally, researchers have considered some aspects of outcomes for people following SCI. These factors, briefly outlined below (see section entitled What research is needed in New Zealand?) provide some insights into the factors this prospective New Zealand study ought to include. New Zealand's unique macrosocial context makes the direct application of international findings to New Zealand problematical. For example, New Zealand has a no-fault insurance scheme (the Accident Compensation Corporation; ACC), which provides rehabilitation and financial support to people whose SCI results from injury in New Zealand; there is no comparable insurance for people whose SCI results from illness or occurs overseas (although they receive access to publicly funded post-SCI healthcare services). Also, it is plausible that individual experiences and societal perceptions of disability in general, and SCI in particular, may vary from country to country—again making the application of international findings about post-SCI life chances, life choices, subjectivity and outcomes, to New Zealand problematical.
To date, apart from one cross-sectional New Zealand study involving paraplegic individuals,1 little is known of the impact of these factors on the life chances, life choices and subjectivity of people with SCI in New Zealand, and the impact on the quality of life and socioeconomic wellbeing of that population. The absence of this information has negative implications for the design of optimal rehabilitation programmes and disability support services for people with SCI in New Zealand. This proposed (first) prospective study of people with SCI in New Zealand aims to redress these knowledge deficits.
This project will adhere to a theoretical model of disability developed by disabled people, known as the ‘social model’. The social model defines disability as the disadvantage caused by the social, economic, political and environmental factors that restrict and/or exclude impaired people from participating in their communities.2–5 Thomas6 argues that while these restrictions are central to the material conditions of many disabled people's lives, there is a psycho-emotional dimension to social exclusion that may have behavioural and other practical consequences (eg, not applying for a job because potential employers only see the wheelchair). Therefore, disability is about barriers to ‘doing’ and barriers to ‘being’ with consequences for the life choices made. This study aims to gauge the impact of disability on the day-to-day ‘lived experiences’ of people with SCI in New Zealand; holistically and prospectively examining the psycho-emotional, social, economic, political and environmental factors impacting on life chances, life choices, subjectivity, and on health and socioeconomic outcomes.
The key factors and outcomes, included in the study are described below.
Factors influencing life chances, life choices and outcomes following SCI
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 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
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
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
What research is needed in New Zealand?
Apart from one study involving paraplegic individuals little is known on the life histories, life chances and life choices of people with SCI in New Zealand;1 or their health-related quality of life and socioeconomic outcomes. The findings of international studies (above) suggest trends that may or may not be replicated in New Zealand's unique macrosocial environment. The proposed longitudinal study with a ‘census population’ of New Zealanders with SCI will gather quantitative data on what is actually happening at the personal, social and economic levels in the lives of these people, and qualitative data on the meanings they attribute to these events, and how these events and meanings shape life chances, life choices and their overall health and wellbeing. Results will identify: (1) what is working, what is not working and what might be done differently in the spinal units to facilitate psychological, social, cultural, emotional and corporeal integration/rehabilitation; (2) the technologies self-deployed to create a sense of wellbeing; (3) whether specific aspects of ACC provision affect health and socioeconomic outcomes for SCI people. Such results will be of interest to and have implications for health and disability policymakers, rehabilitation professionals, health and social service providers, people with SCI, their whanau (families) and communities, as well as advancing knowledge in the fields of sociology of the body, disability studies and rehabilitation studies.
Longitudinal SCI study aims
The aims of this research are: (1) to explore the interrelationship(s) of body, self and society for a cohort of people with SCI and how these interrelationships have shaped their life chances, life choices and subjectivity; and (2) to investigate how entitlement to rehabilitation and compensation through ACC affects socioeconomic and health outcomes.
To explore with participants the meanings they place on interrelationships between the process of rehabilitation, transition to home after discharge, body, health, substance use, sex, ethnicity and their outcomes.
To understand how these interrelationships and their meanings impact on participants' life chances, the life choices they make, their sense of wellbeing and subjectivity.
To determine whether ACC support affects health and socioeconomic outcomes of people with SCI.
To describe the pathways by which specific ACC supports affect the outcomes for SCI people.
To investigate whether previous socioeconomic conditions affect the course of SCI over 2 years.
Previous research relevant to this proposal
Charlotte Paul and Sarah Derrett were awarded a grant by the Dunedin School of Medicine and the District Health Board Research Advisory Group to undertake developmental work for this project.
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.
Research design and methods
A prospective mixed methods design will be used.66 Quantitative material will be collected in three structured interviews with all participants recruited over a 2-year period. The first (baseline) interview will be 4 months after SCI. This will be a face-to-face interview undertaken by the trained on-site interviewers (who themselves have a SCI) before participants' discharge from spinal units. The second and third structured follow-up interviews will be undertaken by telephone, 12 and 24 months after SCI. The timing of the interviews complies with international recommendations for follow-up times in injury outcome studies.67 The three structured interviews will collect factual evidence on the ‘what’ of the world SCI people inhabit: their life chances, attitudes, health status and life satisfaction, as this constitutes the framework in which they create their subjectivity. Two qualitative face-to-face interviews with a subsample of 20 participants will explore in greater depth the meanings participants now attach to these phenomena, and how these meanings shape their life choices, life chances and subjectivity. The qualitative interviews will be held 6 and 18 months after discharge from the spinal units. Inferences derived from facts and personal perspectives will be triangulated to enrich our understanding of what actually happens to SCI people in the first 2 years post-injury. The study is presented diagrammatically (figure 1).
Study population and recruitment
Participants will be recruited from both of New Zealand's spinal units, at Burwood and Auckland. There are 70–80 newly SCI-people in New Zealand each year, in whom damage to the spinal cord results in ongoing neurological impairment (some people fracture their vertebrae but this does not result in long-term damage) (Rick Acland, personal communication, 2006). We have actively consulted with each of the spinal units who are supportive of this study. With their support, and with our on-site interviewers based at each of the spinal units, who themselves have SCI, we anticipate a response rate of at least 80% per year (n=56) and a total of 112 participants being recruited over 2 years. The on-site interviewers will introduce the study to potential participants. We will be seeking additional contact details (eg, close friends or relatives) to help us to follow participants over 24 months. Support from both spinal units will also help facilitate a high follow-up rate. We estimate our baseline sample would include 112 people and with a 85% follow-up rate—96 people at the 24 month follow-up point.
All new SCI people with neurological damage to their spinal cord, but without serious cognitive injury, admitted to one of New Zealand's two spinal units will be eligible to participate if they are New Zealand citizens or permanent residents, aged between 18 and 65 years (ie, of working age or would qualify for adult rate invalid benefit). We are anxious to include Māori and Pacific participants in the study because we know ethnicity can affect access to services such as ACC and health services (Sarah Derrett, personal communication in 2006) and also because there have been identified ethnic differences in the concept of disability68 and because Māori have a higher rate of SCI (Marianne Cox, personal communication, 2006; Mere Hibbs, personal communication, 2006). We anticipate at least 20% of the 112 participants will be Māori (n=22), based on previous years' statistics provided to us by the ASRU. The recruitment and eligibility criteria apply to all study participants; the qualitative and quantitative methods and analytical approaches are outlined separately below.
Qualitative methods and analysis
To address the study aims and specific objectives, the process of enquiry must involve a detailed, dialogical relationship with the participants, in which an understanding of their personal journey of re-integration of body, self and society following SCI and their interpretation of events emerges. This will involve two in-depth interviews using open-ended questions and a qualitative paradigm.
Selection of qualitative participants
To ensure a broad range of in-depth perspectives, the subsample of 20 participants will be purposely selected from the larger sample (n=112) on the basis of age, sex, ethnicity and relationship status at the time of injury.
The qualitative interviews will be held 6 and 18 months after discharge from the spinal units (see figure 1). This timing is significant: at 6 months post-discharge the busy-ness of the transition from spinal unit to home has ended and the individual is confronted with what s/he is going to do now (Julian Verkaaik, personal communication, 2006); at 18 months post-discharge it is approaching the 2-year period when the possibility for any neurological recovery, any return of feeling or movement has expired and the reality that ‘this is “it” for the rest of my life’ is sinking in (Susan Sliedrecht, personal communication, 2006). In order to establish rapport and a sense of continuity, participants will be jointly interviewed by the on-site interviewer who conducted their baseline in-person 4-month interview at the spinal unit and Martin Sullivan and/or Maureen Crawford (for North Island female participants) and Sarah Derrett (for South Island participants). Interviews will be recorded on audiotape, and field notes taken of keywords and actions or expressions, to add depth to the spoken words and to assist in analysis.
Themes and issues to be explored
These have been identified from the literature and our previous consultation and include: home-life and support networks; relationships and social networks; employment and leisure activities; income/economic situation; rehabilitation/the spinal unit; health, self-care and the body; sexuality; self and society; hopes, dreams and grieving; use of tobacco, alcohol and substances. Open-ended questions will be used to explore the changes that have occurred in these areas in participants' lives since the accident and the previous interview and the meanings s/he has subsequently attached to these changes. Each participant will then be asked if and in what ways his/her sense of self, relationship with his/her body, and his/her perception of society has changed as a result of the changes accompanying SCI and over time.
Qualitative data analysis
Interviews will be transcribed by an experienced typist who has signed a confidentiality form. Each participant will be sent a copy of his/her transcript for comment and editing to ensure that what they said was captured accurately. In addition, this opportunity to reflect on what they initially said may trigger further thoughts. Tapes, interview notes and transcripts containing no personal identifiers will be entered into an individual file that will be assigned a code number and stored in a locked cabinet until completion of the project. Participants will be offered a copy of the final transcript of each of their interviews and a summary of the research.
This research aims to understand some of the complexities of the interrelationships between body, self and society for a group of people with SCI and the meanings they place on these interrelationships; because it is these interrelationships and meanings that form the basis for their life chances, life choices, their health and wellbeing and subjectivity. The framework for analysis is interpretive, which is essential to explore these phenomenological69 70 understandings of the ‘lived experience’ of SCI. This prospective design will allow comparisons between responses at different points in time to monitor the progress or otherwise of the integration of body, self and society. In the final analysis, both qualitative and quantitative data will be drawn upon to provide rich sources for developing understandings of what actually happens in the lives of people with SCI during their first 2 years post-injury.
Quantitative methods and analysis
Primary research hypotheses
To address the study aims and objectives specific hypotheses will be tested in the quantitative component of the study. These are:
SCI people who receive full ACC support will have better health and life satisfaction outcomes than SCI people who do not receive this support.
People with poor socioeconomic conditions before SCI will have worse health outcomes than more advantaged people, independent of the severity of impairment. This difference will be less marked among those people who receive full ACC support.
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.
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.
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.
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.
Relevance to health
The international literature on people with SCI suggests that, without appropriate rehabilitation, adequate and ongoing disability support services and good support networks, those living with SCI constitute a population at risk of lower levels of health and wellbeing. Apart from one study on paraplegic individuals1 little is known of the health and wellbeing of this population in New Zealand; with how well individuals successfully manage their paralysis in the community and the degree to which they re-integrate into their communities. The proposed research will address these knowledge deficits and provide empirical research on which rehabilitation professionals can evaluate their programmes and health policy makers develop policy in this area, respectively.
The research also has wider significance for the health and wellbeing of the population of people with SCI in terms of explicating and feeding back the technologies of self individuals deploy in their successful (or otherwise) re-incorporation of body, self and society following SCI. It is thus not only relevant to the Health Research Council injury, impairment, rehabilitation and disability research portfolio but also the health and independence of population groups portfolio's focus on ‘the desire of all peoples to achieve their full potential … and participate meaningfully and independently in society.’
Over the past few years the National Spinal Cord Group consisting of representatives of ACC, the spinal units, the New Zealand Spinal Trust and the Ministry of Health, have discussed the possibility of creating a national spinal register of all SCI people in New Zealand. The resulting publications from this proposed research, especially those based on the qualitative material, have the potential to inform the development of this proposed register making it a richer source for future health research.
This proposed research is congruent with government policies, specifically the New Zealand disability strategy,87 which are directed to the creation of a non-disabling society, ie, a society ‘that highly values our lives and continually enhances our full participation’ (p. 1) and the New Zealand health strategy,88 especially the principles of: (1) acknowledging the specific relationship between Māori and the Crown under the Treaty of Waitangi; (2) the good health and wellbeing for all New Zealanders throughout their lives; (3) the timely and equitable access for all New Zealanders to a comprehensive range of health and disability services, regardless of ability to pay; and (4) the need for a high-performance system in which people have confidence (p. vii); and objectives 3, 5, 9, 10, 12, 14, 23, 24 (pp. 10–11).
Finally, the New Zealand National Health Committee ‘People with chronic conditions: discussion paper’89 stated ‘as these are significant inequalities in severity and onset of chronic illness, improving how people with chronic conditions are supported is an efficient way to reduce health inequalities’ (p. 9). If our results for SCI show that people receiving full ACC cover have better health outcomes this will be significant empirical evidence. More importantly, understanding the pathways by which ACC cover improves health outcomes will enable specific interventions to be trialled among people with SCI (and possibly other chronic conditions) who do not currently receive ACC. If the course of disability from SCI over 2 years differs according to previous socioeconomic conditions, but possibly mainly in the group not receiving ACC, this will indicate that ACC type support is an important way of reducing social inequalities in health and, if so, will suggest opportunities for trialling new specific interventions.
Relevance to Māori health outcomes
Over the financial years 2003–6, Māori with SCI were admitted to the ASRU at rates of 24.2%, 25.4% and 22% of total admissions (Marianne Cox, personal communication, 2006). These figures suggest that Māori incur SCI at a significantly higher rate than the rest of the population. Ranga Hauora, Māori Health Service, Burwood Hospital, informed us that little is known of what happens to Māori following SCI, but anecdotal evidence suggests their health/support needs are not being met (Mere Hibbs, personal communication, 2006). Ranga Hauora strongly supports this proposed research as it will provide empirical evidence on the health needs of Māori with SCI.
While the proposed research is not aimed specifically at Māori, it will include Māori participants and will be in accordance with the aims and objects of He Korowai Oranga,90 especially that which ‘…challenges us to create environments that are liberating and enable whanau to shape and direct their own lives, to achieve the quality of life Māori are entitled to…’ (Foreword, iii). Furthermore, it will provide empiric evidence of the extent to which the following are working for Māori with SCI:
Te Ara Tuatoru – Pathway Three: ‘ensure whanau receive timely, high quality, effective and culturally appropriate health and disability services’ (p. 9)
Objective 1.3: ‘To remove barriers to Māori with disabilities and their whanau participating in New Zealand society, including Te Ao Māori.’ (p. 13)
This project is also consistent with the aims of Nga Pou Rangahau Hauora Kia Whakapiki Ake Te Hauora Māori91 and Vision Matauranga,92 by providing information of direct relevance to Māori and their communities about barriers to access, examples of service and ACC provider strengths (and weaknesses), and the quality of life outcomes for Māori after injury.
Dissemination of results
Dissemination of quantitative findings in lay summary to all participants will occur after the 24-month interviews. Summaries of the qualitative findings will be sent to the 20 qualitative participants after the 18-month interviews. Ranga Hauora have advised that verbal feedback would also be desirable so feedback will be in both verbal and written forms. A number of other avenues of dissemination will be used to ensure that the findings of the research reach professionals working in the area and the broader population of people with SCI: These include:
Seminars for staff and interested patients at the Auckland and Burwood Spinal Units;
Massey University postgraduate diploma in disability studies and professional training of social and community workers;
Seminars in the Department of Preventive and Social Medicine of the University of Otago;
Regular reports in Spinal Network News, distributed by New Zealand Spinal Trust;
National conferences: New Zealand Rehabilitation Association; Sociological Association ANZ; Public Health Association; and relevant international conferences.
Funding This study was funded by the Health Research Council of New Zealand.
Competing interests None.
Patient consent Obtained.
Ethics approval This study was conducted with the approval of the New Zealand Multiregion Ethics Committee.
Provenance and peer review Not commissioned; externally peer reviewed.
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