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Exploring the relationship between people with MS and their confidants

J Springham, Post-Graduate Research Student, Peninsula Post-Graduate Research Institute, Plymouth
H Skirton, Faculty of Health and Social Work, University of Plymouth
JA Freeman, Institute of Neurology, Queen Square, London

Way Ahead 2007;11(1):4-7

Introduction

The purpose of this article is to describe ongoing research that intends to explore how confidant relationships affect the experience of living with multiple sclerosis (MS).

The term confidant applies to a relationship that includes emotional ties and psychosocial support. Research has shown that having a close confidant increases wellbeing in diseases such as cancer and heart disease[1, 2], but until now confidant relationships have not been studied in relation to MS.

This is relevant in view of two recent developments: The National Service Framework for People with Long-term Conditions[3] and the NICE Clinical Guidelines[4]. Whilst qualitative research was used to develop these policy documents, little of the research related to personal relationships and very few qualitative research papers were presented in the final documents. This qualitative research intends to add value to government policy by describing how health and social care professionals might recognise the value of confidant relationships for their client group.

Method

Using a phenomenological approach, the study is being guided by a steering committee comprising two neurologists, two MS nurses and a person with MS.

Participants were invited to take part in the study by their MS nurse or neurologist. A purposive sample with maximum variation in age, type of disease and disease progression resulted in 33 interviews. Data was collected through taped, semi-structured interviews.

The 13 people with MS who chose to take part identified their own confidants. These confidants covered a range of relationships, spouses, partners, mothers and friends. In addition, seven people with MS were identified who suggested they had no confidant and these individuals were interviewed to try to understand how they managed the emotional and social responses to their MS.

Interviews took place in the participants' own homes, in private. A topic guide was used to aid the interviewer but in general participants were encouraged to 'tell their story', to define their idea of the confidant relationship and to explain the impact the relationship had had on their experience of living with MS. The interviews were taped and the tapes were then coded to protect the confidentiality of participants.

Analysis and findings

All the interviews were transcribed and coded and themes have emerged which describe both the experience of having MS and the effect of the confidant relationship.

As in other studies the data highlights that love and duty form the basis of an emotional bond but key to the confidant relationship is the unspoken understanding which allows people with MS to feel 'normal' even when they are not well.

"You know the person [the confidant] is going to understand where you are coming from, it's humanity without the fuss." (P2)

The key themes are as follows:

What it is to have MS

In a previous issue of Way Ahead, Debbie Kralik talked about the importance of 'moving on' in the transition to living well with chronic illness[5]. Our research also suggests that people with MS do not want to be identified by their disease. After the initial diagnosis, and the associated vulnerability and uncertainty, every effort appears to be made by people to return to feelings of normality, to put MS 'in its place'. It does not seem that people are in denial, rather that they recognise the inevitability of their illness and develop ways of dealing with it on a daily basis. They describe themselves as 'normal'.

"I don't want people mollycoddling me I just want to be normal." (P2)

"I'm trying to live in blissful ignorance at the moment." (NC1)

"As far as I'm concerned there is nothing wrong with me. I have weird things, but then again to me it's like you have a cold." (P5)

This concept of 'feeling normal' is supported in the disability literature. Current discussions are concerned with finding a third way of understanding disability. They highlight that the medical model (disability as an illness) and the social model (it is society that disables a person) have not entirely met the needs of the disability movement. Watson[6] suggests that if we see all people as impaired, socially, economically or physically, then impairment itself becomes normal and it is from this viewpoint that support and care might be planned more appropriately. One of the problems with this third way is that the effort of being normal, in a society that still finds disability difficult to come to terms with, is exhausting in an already fatigued individual. If we decide that everyone is impaired it lessens our understanding of the effort people with MS have to make on a daily basis to 'put MS in its place' and 'deal with it'. An in depth exploration of the effect on the self of a diagnosis of MS and this daily struggle may help to increase our recognition of the effect of living with different degrees of impairment.

Effect on self

The data suggests that at the time of diagnosis there is a fundamental shift in how the participants see themselves. This shift can be described as dissonance - a feeling of deep discomfort. In order to remove this uncomfortable feeling the participants seem to make every effort to return to their previous feelings of normality. Yet whenever their condition deteriorates, or the outside world causes them to be reminded they have MS, then the dissonance returns.

Diagram representing causes of dissonance - other people's reactions, disability access, physical and medical deterioration, clinical staff

Figure 1 provides a schematic depiction of this. The web shows that as people with MS move through the world they can interact comfortably with the world around them provided dissonance does not occur. Once there is a reminder, as shown by the vertical arrows pressing down at the intersections of the network, they begin to feel uncomfortable and look for reassurance. Our data suggests that this reassurance often comes from their confidant relationship.

The confidant relationship

All the participants were clear in their definition of what they felt a confidant should be. They used words like trust, unspoken understanding and humanity.

"The fact that you don't have to think three times before saying anything." (P2)

"We talk about anything, literally anything, talk about it and joke about it." (P4)

"….from time to time she'll say you know ''Everything alright, how are your legs?'' And if we were out walking on the moors or the coast or something, and she'd say ''Are you going to be alright with this?'' You know, she'd think about that and I'd said '' No, no I'm alright.'' So it would be brief and she'd realise I didn't want to pursue that and wouldn't carry on with it." (P7)

This suggests that people may rely upon their confidant to maintain or re-kindle a feeling of normality and, to a certain extent, protect the person with MS from the dissonance that occurs when they are reminded about their condition. One person with MS described how if she tripped when they were out then the confidant would suggest going to have a cup of coffee rather than pointing out the reason for the accident.

Figure 2 illustrates the comforting and protective role of the confidant; allowing time and helping the person with MS to interpret information coming from outside, but always trying to protect their inner reality which identifies itself as a normal person.

Diagram representing the internal/external reality conflict for a person with MS - inner reality (normality) involves interpretation and choice, this doesn't apply to me, confidant protection, I feel and look normal; outside world involves disability access, clinical staff, physical and mental deterioration, other people's reactions

For the confidant the mutual caring, or as Nolan[7] describes it the 'reciprocity' is important:

"The fact that you can receive someone's love in a different way, I think it's marvellous." (C3)

Fundamental to the relationship, in a world which had been made uncertain by the introduction of the diagnosis of MS, is this reciprocity and depth of emotion in the relationship which has been described in the study as the 'strength of love':

"I'm looking after her because I love her. She's everything to me." (C5)

"I still love him, we've been married for 41 years and we went out from school. We're not like two turtle doves, far from it, we're just normal people who have a few words." (C13)

"He said "Well I'm going to fight for you" and I said, "Fine we'll fight together."" (P6)

People with no confidant

Seven people who described themselves as having no confidant were interviewed to try to understand how they dealt with the emotional responses to their MS. The first problem was discovering how people had made their choice of confidant. In several cases people with MS had automatically chosen their spouse, and yet as the interview proceeded it became clear that none of the qualities of the confidant relationship were shown in their relationship. Equally when the people who had no confidant were interviewed it seemed to be that in fact they did have a confidant, it was just that they found it hard to admit it.

For these people it appears that some circumstance in their lives may have given them the inability to trust people enough to allow them a confidant relationship. As they described the reasons for not choosing a confidant they seemed emotionally upset;

"'I don't see much of people, I don't mind, I just deal with it, I always say I got no choice." (NC6)

or, they rationalised the lack of a close relationship:

"I haven't got to think about somebody else's feelings." (NC5)

Others felt that if they chose a confidant for their MS they would have to admit to themselves they had MS. Rather than being in denial they described it as follows:

"I'm not a victim of anything unless I choose to be and I don't choose to be a victim of MS." (NC2)

Next steps

Focus groups are being held in Autumn 2006 to discuss the findings with some of the participants with MS. Two further focus groups will then be undertaken, with health and social care professionals, to consider what the findings may mean for the provision of care and rehabilitation to people with MS.

Implications for practice

The purpose of this kind of study is to create new knowledge. This may not be to radically change health and social care professionals' approach to their patients but to give them an opportunity to reflect on the questions they ask patients and the value of the time they have with them. A therapeutic relationship includes the professional delivery of treatment using a holistic approach. The participants in this study were also asking for humanity, trust and love. Whether or not professionals feel part of their role is to develop a confidant relationship with their patients may be up to individual professionals to decide, but understanding the value their patients put on these qualities may change the quality of the time they share.

Acknowledgements

I would like to thank the Faculty of Health and Social Work University of Plymouth for my student Bursary and the MS Society for a grant that enabled the transcription of the interviews.

References

  1. Dracup K, Evangelista LS, Doering L, et al.
    Emotional well-being in spouses of patients with advanced heart failure.
    Heart Lung 2004; 33(6): 354-61.
  2. Jones RB, Hampshire AJ, Tweddle S, et al.
    The clinician's role in meeting patient information needs: suggested learning outcomes.
    Med Educ 2001; 35(6): 565-71.
  3. Department of Health.
    The National Service Framework for Long-term Conditions.
    London: Department of Health; 2005.
  4. National Institute for Clinical Excellence.
    Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE Clinical Guideline 8.
    London: NICE; 2003.
  5. Kralik D.
    'Moving on': the transition to living well with chronic illness.
    Way Ahead 2006; 10(3): 4-8.
  6. Watson N.
    Well I know this is going to sound very strange to you, but I don't see myself as a disabled person: identity and disability.
    Disabil Soc 2002; 17(5): 509-29.
  7. Nolan M.
    Relationship centered care towards a new model of rehabilitation.
    Br J Ther Rehabil 2002; 9(12): 472-7.

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