The association between discrepancy in illness representations on distress in stroke patients and carers

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Abstract

Background

To investigate the association between the illness representations of recently diagnosed stroke patients and their carers and distress in the months after stroke.

Method

Forty-two stroke survivors and their carers were assessed at 3 months and 32 couples returned data at 6 months after stroke. Patients and carers completed the Illness Perceptions Questionnaire-Revised, Barthel Index, Significant Others Scale and General Health Questionnaire. Analyses were conducted using the Actor–Partner Interdependence Model.

Results

Carers were more pessimistic than patients about the symptoms, timeline and consequences of the stroke. Patient distress was associated with both patient and carer illness representations at Time 1, and their own illness representations and discrepancy in the illness representations of patients and carers at Time 2. Carer distress was associated with their own illness representations at Time 1, but not the patient's illness representations. Discrepant illness representations were associated with higher carer distress at Time 1 but not Time 2.

Conclusion

Illness representations of stroke patients and carers have implications for adjustment for both partners. It is important to understand couples' views of stroke, as discrepancy was as strongly associated with patient and carer distress as was physical disability.

Introduction

Stroke can affect the emotional well-being of stroke survivors [1], [2], [3]. The management of chronic illness usually involves family members, and many informal carers experience distress [2], [4] and report strain on the family as a result of stroke [5]. It is therefore important to understand patients' and carers' beliefs about illness as these may be important for understanding its impact.

Previous research has used the Common-Sense Self-Regulation Model (CSM) [6], [7] to examine the association between illness representations and coping and adjustment to chronic disease. The CSM proposes that when faced with a health threat, individuals form a cognitive and emotional representation of the threat which provides a framework for understanding and managing the illness. A meta-analysis by Hagger and Orbell [8] concluded that the way patients conceptualise their illness affects their physical recovery, psychological well-being and behavioural adaptation [8]. Studies have identified an association between specific illness representations and distress in a range of chronic conditions, with lower perceptions of control, greater perceptions of consequences, longer timeline and lower illness coherence all associated with poorer outcomes [9], [10], [11], [12], [13]. However, there is a dearth of studies examining these associations in stroke patients and their carers [14], [15].

Researchers have also examined the association between carer's illness representations and patient outcomes [16], [17], [18], [19]. Some of these studies have examined carer illness representations as predictors of patient outcomes, whilst others have examined the role of discrepancy in patient's and carer's illness representations as predictors of outcomes. Studies have employed data analysis methods which are based on the assumption of independence of observations, but because close interpersonal relationships have significant potential for mutual influence [20] these approaches may not be appropriate. The present study overcomes the limitations of earlier studies by using the Actor–Partner Interdependence Model (APIM), a paired regression technique [21] which integrates the concepts of non-independence with appropriate techniques for measuring and testing it [22].

A range of approaches can be used to operationalise discrepancy (see [18]). Some studies have calculated a difference score by subtracting the carer score from the patient score (or vice versa), which retains information about the direction of difference, but this is not appropriate if discrepancy is to be modelled alongside the patient and carer scores (for example in regression analysis) because the scores are linearly related. One way of overcoming this association is by calculating a product term or using the absolute difference score to represent discrepancy. Both of these approaches can be used to model the interaction between actor and partner scores in the APIM [23]. The product term is more commonly used and has the advantage of not suffering from ceiling effects. However, in the present study we used absolute difference scores because the same units of measurement are retained, making the results easier to interpret. (For a discussion on the relative merits of absolute difference scores and product terms as a measure of difference see [23], [24]).

In summary, previous research indicates that illness representations are useful in explaining the variance in levels of patients' and carers' distress, and suggests that carers' views can impact on patient distress, and vice versa. However, the condition-specific nature of these associations [8] means it is important to examine the extent of these associations within a stroke population. In the present study we therefore examined the illness representations of stroke patients and carers and their association with distress for both partners. Our research questions were: 1) Is patient and carer distress positively associated with those dimensions of the illness representation previously reported to be important in the literature (lower personal control, greater consequences, longer timeline and lower illness coherence)? 2) Is patient and carer distress positively associated with their partners' illness representations of lower personal control, greater consequences, longer timeline and lower illness coherence? 3) Is patient or carer distress positively related to discrepancies in their understandings of the stroke, after controlling for each partner's illness representations?

Section snippets

Participants

Patients who had been admitted to hospital following a first-ever stroke were approached if they met the following inclusion criteria: a) a first ever diagnosed stroke occurring within the past 10 weeks; b) the patient was deemed well enough by their clinician to be interviewed; c) the patient had sufficient language skills (as determined by speech and language therapist assessment); d) the patient had MMSE (Mini-Mental State Exam score) of over 25 out of 30 [25]; e) the patient had a named

Procedure

Potential participants were consecutive patients admitted to the stroke ward of two hospitals. Carers were defined as the person the patient felt closest to. No other inclusion or exclusion criterion was defined for carers. Carers were approached once written consent had been obtained from the patient. Written informed consent was then obtained from carers. Ethical approval for the project was granted by the North Cumbria Local Research Ethics Committee, England (05/Q1303/1).

Patients and carers

Statistical analysis

All variables were summarised using descriptive statistics (means and standard deviations). Paired t-tests were used to examine differences in the illness representations of patients and carers. Pearson's correlation statistics were used to examine the relation between patients' and carers' illness representations. The Actor–Partner Interdependence Model (APIM: 21) was used to examine the impact of participants' illness representations on their own and their partner's distress levels. The actor

Patient and carer characteristics

In 24 of the 42 couples (57%) the patient was male. Patients were on average 65.12 years (S.D. = 10.2), while carers were on average 57.1 years (S.D. = 13.25). Mean length of stay in hospital was 35.52 days (S.D. = 10.2). Barthel Index scores ranged from 6 to 20 (Mean = 16.67 S.D. = 3.58). In 34 couples (81%) the carer was the patient's spouse. The remaining carers were adult children with significant caring responsibility for their parent. The majority of carers were female (n = 30; 71%). Forty-two couples

Discussion

Our longitudinal study explored the role of discrepant illness representations in patient and carer distress among couples where one partner had recently experienced a first stroke. We found moderate to strong correlations between patient and carer views about the illness identity, timeline, consequences and cause of the stroke. This finding is in keeping with research into other illnesses, including heart disease [38]. Carers were generally more pessimistic than patients, a finding that is in

Conflict of interest

There are no conflicts of interest.

Acknowledgements

This research was funded by an interdisciplinary Ph.D. studentship from the Economic and Social Research Council and Medical Research Council. We wish to thank the hospitals and all the families taking part in this research. Thanks also go to Dr. William Cook for his advice and guidance in the application of the APIM to discrepancy data and multi-level modelling.

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