Coping and psychological adjustment among people with multiple sclerosis

https://doi.org/10.1016/S0022-3999(03)00132-6Get rights and content

Abstract

Objective

This study was concerned with examining the coping and psychological adjustment of people with multiple sclerosis (MS) and determining how they were different in these dimensions from people from the general population. The role of severity and duration of illness as well as levels of social support on coping style and adjustment were also evaluated.

Method

The participants were 381 (144 men, 237 women) people with MS and 291 (101 men, 190 women) people from the general population.

Results

The results demonstrated that people with MS (particularly men) were less likely to adopt coping styles related to problem solving and seeking support and demonstrated poorer levels of adjustment on all dimensions. Adopting a wishful thinking coping style, as well as a lack of problem-focused coping or failure to seek social support, was also more likely to be associated with poorer psychological adjustment for both men and women with MS. Levels of health impairment were only minimally related to psychological adjustment, particularly for men.

Discussion

These findings highlight the importance of developing educational programs that include strategies to adopt more problem-focused coping strategies, so that people with MS can more readily adjust to their illness.

Introduction

Multiple sclerosis (MS) is a progressive neurological disorder that results in demyelinization of the nerve fibres of the central nervous system. It is more likely to affect women than men, and the age of onset is early–middle adulthood. The progress of the disease is unpredictable, the etiology is unclear, there is currently no cure and only symptomatic relief for people with the disorder is available [1]. Given the debilitating nature of the disorder, and its unpredictable development, there is a great deal of uncertainty about the future health and well-being of MS sufferers. Not surprisingly, the symptoms associated with the disorder may lead to negative emotional responding. The extent to which this occurs may be partly dependent on the way in which people with MS cope with the changing symptomology associated with the illness. The aim of the present study was to examine the relationship between illness-related variables, coping style and psychological adjustment among people with MS, and compare these levels of adjustment and coping styles to people from the general population.

People with MS need to cope with unpredictable deteriorating health, changing social and intimate relationships and increasing support needs. Their general well-being depends upon how they adapt to these changing circumstances. The fact that things seem to be occurring that are outside the individual's control may lead to negative reactions. A perception of a lack of control over the illness may lead respondents to feel helpless and become depressed. An assessment of all these factors and their interrelationships are needed to provide an evaluation of why different people with MS respond in different ways to the same objective situation, why they adopt different coping strategies and the effect of these different coping strategies on adjustment.

One possible explanation for different coping strategies and different levels of adjustment is that people who are more debilitated or have had the illness for a longer period may demonstrate a more impaired response. Consistent with this suggestion, Devins et al. [2] found that increasing levels of disability among people with MS were associated with poorer psychosocial functioning (decreased psychological well-being and increased levels of distress). In contrast, Ford et al. [3] found no association between mood and severity or duration of MS, but they found that levels of both mental and physical fatigue were positively correlated with anxiety and depression. The extent to which respondents coped with the symptoms of MS and the impact of these coping strategies on either fatigue or negative affect were not explored in either of these studies. Noy et al. [4] also found that levels of depression and anxiety were not associated with disease duration and severity, and the authors suggested that denial as well as other coping strategies may mediate the levels of negative affect experienced by respondents.

Coping strategies were not the major focus of the above studies. However, the reason for the mixed results in participants' affective reactions may be due to differences in the responses of the participants to the illness, most particularly, in the coping strategies that they employed. Pakenham et al. [5] found that avoidance and other types of emotion-focused coping were related to poorer adjustment (depression, distress, social adjustment) among people with MS, and that problem-focused coping was related to some aspects of better adjustment. In a further longitudinal study, Pakenham [6] found that the levels of depression, distress and social adjustment among MS patients at Time 2 (12 months after Time 1) were predicted by less disability at Time 1, together with greater reliance on problem-focused coping and less reliance on emotion-focused coping at Time 1.

Jean et al. [7] also found that greater levels of distress and depression were experienced by people with MS who used emotion-focused coping, but that problem-focused coping was not related to lower levels of distress. They found that emotion-focused coping was more likely to be used during periods of elevated psychological distress. Consistent with this finding, Aikens et al. [8] conducted a prospective study of people with MS and found that the only coping strategy to predict future mood symptoms among people with MS was the escape avoidance coping strategy, and not the use of positive coping strategies.

Most of the above studies failed to include a comparative group, and so it is difficult to ascertain if people with MS use different coping strategies from other populations. Of course, the nature of the comparative group is also an important consideration in terms of the conclusions that are drawn. For example, Hickey and Green [9] found that depression and hopelessness levels were higher among both men and women with MS than respondents from the general population and respondents who were physically ill. This study was one of the few studies that discussed gender differences in coping style. Women with MS were no different in either their depression or hopelessness scores from a psychiatrically depressed group of women, but the men with MS had lower levels of depression and hopelessness than the group of psychiatrically depressed men. Problem-focused strategies among both men and women with MS were higher than emotion-focused responses. However, the coping strategies of the other groups were not evaluated, and so the extent to which the findings in relation to negative affect can be attributed to different coping strategies is unclear. Further, the specific nature of the emotion-focused strategies was not clear. This information is important to better understand the experiences of people with MS. It is also important to better inform researchers and practitioners about the effectiveness of coping strategies, so that intervention programs for people with MS can be developed to assist them in handling stress in their lives.

Mohr and Goodkin [10] found that intervention programs among people with MS that focused on improving coping skills were more effective at reducing depression than interventions that focused on improving insight. Mohr et al. [11] also found that adaptive coping was related to higher levels of “benefit finding,” which included a deepening of relationships, enhanced appreciation of life and an increase in spiritual interests. Teaching coping skills to people with MS was also found by Schwartz [12] to be associated with a greater number of aspects of well-being than a program that involved telephone support from peers. Clearly, these relationships need to be explored further, and differences between people with MS and people from the general population need to be examined more closely.

The present study was designed to evaluate the differences between people with MS and the general population in their coping styles and their psychological adjustment. It is always difficult to determine the most appropriate comparative group to use in research of this type. The use of another illness group is sometimes proposed, but this group may have different types of factors that influence their adjustment beyond those that apply to people with MS. Therefore, it was decided to include a comparison group from the general population for this study. The study was designed to examine the impact of coping on levels of depression, anxiety, anger, fatigue and confusion. Due to the dearth of data on gender, differences between men and women were also examined. Predictions regarding the use of the various coping strategies and the impact of these strategies on the above measures of adjustment were formulated. It was expected that people with MS who used more emotion-focused (detachment, wishful thinking) and fewer problem-focused (problem-focused coping, seeking social support, focusing on the positive) strategies, who have experienced lower social support, more severe illness and had experienced the illness for a shorter length of time, would experience lower levels of adjustment than other people with MS. It was also predicted that people with MS would use more emotion-focused coping, less problem-focused coping and experience poorer adjustment than people from the general population.

Section snippets

Participants

The sample comprised 381 individuals (144 men, mean age=46.86 years, and 237 women, mean age=44.45 years) registered with the MS Society of Victoria, Australia, and 291 individuals (101 men, mean age=50.03 years, and 190 women, mean age=45.35 years) drawn from the general population, who did not have MS. Ages of respondents in each group ranged from 18 to 65 years. Respondents were primarily drawn from the middle socioeconomic classes and were largely Anglo-Saxon in their cultural background.

Results

A MANOVA was conducted to determine gender and group (MS vs. general population) differences in coping styles (problem-focused, detachment, wishful thinking, seeking social support, focusing on the positive) and adjustment (depression, confusion, tension, fatigue). The results demonstrated a gender [F(9,660)=7.13, P<.001], and group [F(9,660)=31.99, P<.001] but not a Gender×Group Interaction [F(9,660)=1.66, P>.05] effect. Women were more likely than men to seek social support and focus on the

Discussion

The results of this study demonstrate that women (both with MS and from the general population) were more likely to demonstrate the use of coping strategies that involved seeking social support and focusing on the positive than men. However, there were no gender differences in the extent to which men and women used the three other coping strategies: problem-focused, detachment and wishful thinking. Because women are generally found to be more socially oriented than men, these results are

References (21)

  • H Ford et al.

    The nature of fatigue in multiple sclerosis

    J Psychosom Res

    (1998)
  • S Noy et al.

    A new approach to affective symptoms in relapsing–remitting multiple sclerosis

    Compr Psychiatry

    (1995)
  • S Warren et al.

    Emotional stress and coping in multiple sclerosis (MS) exacerbations

    J Psychosom Res

    (1991)
  • SM Rao et al.

    Emotional changes with multiple sclerosis and Parkinson's disease

    J Consult Clin Psychol

    (1992)
  • GM Devins et al.

    Psychosocial impact of illness intrusiveness moderated by age in multiple sclerosis

    Psychol Health Med

    (1996)
  • KI Pakenham et al.

    The role of coping in adjustment to multiple sclerosis-related adaptive demands

    Psychol Health Med

    (1997)
  • KI Pakenham

    Adjustment to multiple sclerosis: application of a stress and coping model

    Health Psychol

    (1999)
  • V Jean et al.

    Psychological and neurological predictors of coping patterns by patients with multiple sclerosis

    J Clin Psychol

    (1999)
  • JE Aikens et al.

    A replicated prospective investigation of life stress, coping, and depressive symptoms in multiple sclerosis

    J Behav Med

    (1997)
  • A Hickey et al.

    Coping with multiple sclerosis

    Ir J Psychol Med

    (1989)
There are more references available in the full text version of this article.

Cited by (137)

  • Patients experiences when receiving diagnosis of multiple sclerosis: A qualitative systematic review

    2023, Multiple Sclerosis and Related Disorders
    Citation Excerpt :

    For most pwMS, the diagnosis is associated with the emotional trauma, which in turn leads to severe denial of the disease (Dennison et al., 2010; Fallahi-Khoshknab et al., 2014). The perceived lack of control may lead patients to feel helpless and depressed (McCabe et al., 2004). MS may affect future plans, self-confidence and self-esteem, families and career prospects (Edwards et al., 2008).

  • Relationship of coping strategies with mood symptoms, disease related characteristics and demographic variables in patients with multiple sclerosis: A systematic review study

    2022, Multiple Sclerosis and Related Disorders
    Citation Excerpt :

    Previous research is mixed and unclear about which clinical characteristics are associated with the use of adaptive and maladaptive coping strategies. Studies show higher emotion-focused or avoidant coping associated with unemployment (Grytten et al., 2017), disability (Lorefice et al., 2018) or demographics including increased age (Lorefice et al., 2018; McCabe et al., 2004). Studies report more emotion-focused strategies in females (Montel and Bungener, 2007; Milanlioglu et al., 2014).

  • Young adults’ adjustment to a recent diagnosis of multiple sclerosis: The role of identity satisfaction and self-efficacy

    2019, Disability and Health Journal
    Citation Excerpt :

    Some interesting results emerged about the role of gender: young men seem to experience greater psychological difficulties than young women, in terms of high depression and negative affect, as time passes since the diagnosis, as also found in our previous study on recently diagnosed patients aged from 18 to 6523. The result is in line with studies indicating that male MS patients are more sensitive to physical limitations and are less able to buffer the debilitating aspects of MS than female MS patients.36,37 In line with literature, we found that the adjustment to MS was related to both identity satisfaction19–22 and self-efficacy.23,25,26

View all citing articles on Scopus
View full text