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Advanced multiple sclerosis (MS) and family relationship processes

Anna MacLehose, Research Psychologist
Dr Ceri Bowen, International Research Fellow
Royal Hospital for Neuro-disability, London

Way Ahead 2009;13(3):6-7

Actually I only come here for a lie down. I can't get any rest at home!

Introduction

Research has paid little attention to the impact of MS on families, despite support for families being a key recommendation from the Department of Health¹. The MS Trust therefore agreed to support a research project led by Dr Ceri Bowen, International Research Fellow at the Royal Hospital for Neuro-disability to investigate the psychosocial impact of advanced MS on families.

Method

The following inclusion criteria required that all study participants:

were over 16

Study participants had to be a close relative of a person with MS who:

had an EDSS score of 7.0 or above; and
was in residential or respite care.

The qualitative research methods employed involved in-depth interviews with 25 relatives from 21 families, living in different parts of England. The main focus of the interviews lay in capturing individual experiences of supporting a family member with MS. These personal stories were then transcribed, analysed with the help of computer software, and form the basis of the following report and recommendations.

Results

Four key themes emerged out of the interviews:

1. Information, communication, and understanding

The interviews revealed great variation in the levels of information family members had received about MS, even within the same family. It was often the children of parents with MS who had access to the least information, especially if there was a 'family culture' of not talking about MS. As a result, family members were often unprepared for the deterioration they saw in the family member. Conversely, some family members lived with the unrealistic expectation that their loved one might die at any moment and were constantly preparing themselves for the event. Information passed on by health professionals tended to be inconsistent and resulted in an incomplete understanding of MS.

These findings demonstrate that health professionals need to be more aware that information given to relatives does not automatically translate into understanding. There is a clear need for professionals to monitor the family's understanding at various stages of this changeable condition.

2. Family relationships, roles and responsibilities

Relationships within the family often have to adapt in response to a family member's experience of MS. People with MS sometimes display changes in their behaviour, outlook and beliefs and such changes can have a significant impact upon family relationships.

The interviews also revealed that family members sometimes abstain from sharing positive aspects of their own lives with the person with MS in order to avoid the stark disparity between their own capabilities. Such reasoning can induce an unjustified sense of guilt in relatives.

In some cases the person with MS may endeavour to 'live through' other family members, which can pose relationship challenges. In some situations, siblings and children of people with MS carry out a greater number of family responsibilities than their peers.

Relatives can be faced with difficult decisions to make on behalf of the relative with MS with little support, and while such situations can sometimes bring families closer together, marital relationships often face enormous strain. Often, relationships between other members of the family may have little time to be nurtured because of the energy and time required to care for the person with MS.

It also became apparent that family members of people with MS do not easily identify with the term 'carer' and consequently fail to access what little 'carer support' is available to them. Responsibility for the decision to move the person with MS into residential care can also prove difficult for family members. Individual family members often struggle to make the transition from being the main individual responsible for the care of the person with MS, to being a visitor in an alternative care setting.

3. Emotions, coping and support

MS has an impact upon every member of the family. The emotions they experience can include guilt, frustration, relief, sadness, loss, despair, and empathetic pain.

Family members reported that care support for their relative with MS was often reactive to issues and crises, rather than proactive, which greatly increases stress and the family challenge of managing and coping with the situation. The family has to deal with the added intrusions of homecare staff entering the family home, as well as visits from various health care professionals. The social life of the family and of each individual is also affected. Several family members expressed sadness and frustration when friends did not show understanding of their situation. Yet families may choose to keep the reality of their situation private, particularly when things are difficult. This makes it harder for health professionals to determine whether relatives are under too much pressure and carrying out inappropriate care tasks.

Family members caring for a person with MS do not always recognise their own needs, and struggle to prioritise them when necessary. In hindsight, family members often said that as a family, and as individuals, they were in real need of support at times, but reflected that they would have found it very difficult to accept. Several family members also commented that they were unsure what type of support would have helped.

MS specialist nurses were seen as being a phenomenal support, but relatives often wished they had found out about MS specialist nurses at a much earlier stage. There is a clear need for better sign-posting to support services for families of people with MS.

Furthermore, many family members who were caring for a person with MS failed to recognise the importance of taking time out from this responsibility. Carers were not always aware of the provision of respite services which would have allowed them to take a break from their responsibilities as carer and relieve them of some of the pressures that such responsibility can entail.

4. Life outlook and reflection

Many family members shared profound reflections on the family impact of caring for someone with MS. Family members made personal observations on how it has altered aspects of their own character and their approach to life. Several family members felt they had to rebuild areas of their lives, yet reflected that they had gained rich insights into life from these experiences.

Comment and service implications

While commendable, the recent push from the Department of Health to raise awareness of the role and needs of 'carers'; it is driving towards individualised help rather than approaching the individuals' health challenges alongside the needs of the family unit.

The insight gained from these interviews indicates that there needs to be greater awareness of the impact of MS and the ongoing challenges faced by families. Services need to be adapted to provide a more family-centred approach in the provision of care. It is all too easy for struggling families to fall through the net because they do no shout loud enough for support.

In view of these research findings, a funding proposal has recently been submitted to the National Institute of Health Research to develop the idea of a family/relative care pathway. It is hoped that such a tool would facilitate the provision of more family-oriented services.

Recommendations

There are ways in which clinical teams can incorporate the lessons from this study into clinical practice. Before teams set about doing so, there are two key questions that need to be addressed:

To what extent do you consider providing support for family members to be within your clinical remit?
Who is taking a lead within the team to check and discuss how all family members are managing?

The following are simple ways of securing a family-centred approach to practice:

Determine whether there have been opportunities for family members to talk in depth with professionals previously. Gauge their level of understanding of the condition and its prognosis, and answer their questions.
Encourage parents to speak directly with their children about the impact of MS, talking through particular concerns and questions young people may have, remembering that today's children may be tomorrow's carers.
Be aware of any changing circumstances within the family. Are there others within the family needing extra care? Be aware of any births, deaths, or other life events that may occur.
Make a plan for the next potential 'care' stage to help avoid crisis. If the relative is the main carer, form a plan for when the relative might be ill or absent for any reason. Ensure family members also know who to call when difficulties increase or they do hit a crisis. Do they have a good link with an MS nurse? Have they been signposted to other MS or carer support organisations? If there is a feeling that further psychological support is required for family members, can that be dealt with within the team?
Emphasise the importance of breaks as individuals and as a family. The consideration of a holiday or 'time out' sometimes stirs up feelings of guilt. Teams need to work with families to overcome these issues and make 'time out' regularly achievable for all family members. Respite care should be discussed with them and they should be encouraged to participate in activities they enjoy as a family.
Encourage questions and ask for any feedback, reflections, fears, or concerns they have. Try and ascertain what kind of social support network they have around them and direct them to people or organisations who can help.

Dissemination

These findings have been presented locally and nationally at a number of conferences. The presentations were well received and clinicians agreed with the overall message that awareness of the needs of families must be raised and services adapted accordingly. The study paper has been submitted to an academic journal.

There are plans to produce an eye catching postcard with some of the project's main messages on to send to residential homes, primary care trusts and GP surgeries. The postcards will be available from the MS Trust.