The focus of this study will be the lived experience of women suffering from Multiple Sclerosis and their ability to maintain a quality of life through various coping strategies. Therefore, literature surrounding the quality of life and coping mechanisms in MS sufferers will be critically appraised.
A literature review was performed to identify published material relating to the lived experience of women suffering with MS with the main focus being on how women cope with the challenges that MS brings everyday and how they try and maintain a quality of life. This was done to introduce the topic of interest. When conducting the research there was little research into this area but the search was limited to health and social care databases such as CINALH, Internurse, Science direct, Pubmed and the library catalogue. The key words that were initially used in the literature search were lived experience, multiple sclerosis, women and quality of life and coping mechanisms, however this revealed little research so key words such as fatigue, education and depression were included.
2.1 Emotional Responses in Multiple Sclerosis
Uncertainty is one of the first stresses that MS places on women. First there is uncertainty until the diagnosis has been confirmed. Having MS means living with uncertainty and adapting to changing situations with the course of MS. Being unpredictable posses an emotional challenge to build a sense of stability and security in the face of uncertainty (Halper & Holland, 1997). Millerââ‚¬â„¢s (1997) phenomenological study emphasized the primary role of uncertainty in the lived experiences of patients with relapsing MS. The participants in this study are described as living one day at a time, not knowing how they will feel tomorrow, leading to negative effects on employment, family life and coping abilities. It was also evident that fear and loss of control in daily life were also experienced due the unpredictability of relapsing MS. Olsson, Lexell & Soderberg (2007) conducted a qualitative in order to describe the meaning of womenââ‚¬â„¢s experience of living with MS. The study consisted of 10 women with secondary progressive MS and the fact that daily life was influenced by MS. Women spoke about their daily lifeââ‚¬â„¢s, their experience of symptoms and their thoughts about their illness. They described that they were no longer in charge over their body and this had a great impact on their quality of life, however, women were found to actively strive to maintain strength and power to carry on to protect their dignity. This study showed that people with the progressive form of the disease appeared to cope better and were determined to improve their quality of life despite the effects of the illness, this could be due to them accepting MS as part of their life.
Hope relates to those things that can be realistically achieved (Pinson, Ottens & Fisher, 2009). This implies that the individual has devised a plan that has the likelihood of being carried out to achieve resolution of a problem. Miller (1997) found that hope provided a means for dealing with the uncertainty of MS. In a quantitative study carried out by Goretti, Pataccio, Zipoli, Hakiki, Siracusa, Sori and Amato (2009) they found that women tend to have higher levels of hope and optimism when facing the disease at early stages. Their study looked at the psychological features of depression, fatigue and anxiety, coping strategies and their influence on quality of life in people suffering from remitting relapsing MS. , furthermore, a qualitative study by Pinson et al (2009) found that hope was present as a coping resource. Also, hope seems to interact with psychosocial resources such as self-esteem, hope has often been related to higher levels of self-esteem and evidence of better social support. However, Pinson et al (2009) study only focused on people with a progressive form of MS and who did not suffer with depression. Depression itself can have a significant affect on a individuals self-esteem, if a MS sufferer as lowered self esteem due to depression then their coping mechanisms will be compromised and this will contribute to a lower quality of life perception ( Murphy, 1998).
2.2 Information and education
Multiple Sclerosis considerably changes peoples every day life and the power and capacity to meet personal expectations (Yorkson, Klasner & Swanson, 2001). Toombs (1995) stated that living with MS implies insecurity on a daily basis as their body can not be taken for granted or trusted, instead, it demands constant attention. To manage every day life, people with MS find it urgent to prioritise their personal goals and the search for information and knowledge regarding the disease has been described as crucial in maintaining control. A qualitative study carried out by Fleming Courts, Buchanan and Werstlein (2004) investigated the lived experience of people with MS and examined their needs from their perspectives using two focus groups consisting of 4 men and 6 women, they found that education is power and having education about the disease helps whose in maintaining a quality of life, without knowledge, information and education from health care professionals about the disease, its symptoms and what support is available then coping with daily activities will be compromised and a good quality of life will not be achievable. Miller (1997) and Pinson (DATE) are supportive of this but conclude that people with MS need information to deal with the uncertainty and the unpredictability of the disease in order to remain in control of their lifeââ‚¬â„¢s.
Coping is an abstract concept that refers to how individuals make meaning and values and can be see as a way of problem solving. Psychological as proved to be crucially important for adjusting to the adaptive demands of the chronic illness and in the past few years as received a growing interest in MS. A study conducted by McCabe, Stokes and McDonald (2009) evaluated the relationship between quality of life and coping among people with MS over a 2 year period using a longitudinal approach. The sample consisted of 144 men and 238 women. The World Health Organisation quality of life scale was used to assess participants overall quality of life. They found that people with MS experienced lower levels of quality for independence, social, environmental and spiritual quality of life but experienced a higher psychological quality of life and focused on positive coping compared to the general population, these findings may suggest that although people with MS have lower levels of quality of life in many areas, they may be more accepting of the situation and knowing that their condition is going to change.
However, in a quantitative carried out by Goretti et al (2009) found that MS patients were less likely to use positive and problem focused strategies and often adopted avoiding strategies more frequently, it was also found that younger patients with relapsing remitting MS were less disabled so therefore the disease had a lower impact on their quality of life, also, positive attitude and planning activity strategies were less likely to be adopted by patients with lower disease duration. They tended to have higher levels of hope and optimism when facing the disease at its early stages. Those who adopted avoiding strategies were more likely to experience depression and anxiety that contributed to their overall quality of life.
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Pinson et al found that knowing family and friends would provide support either emotional or physical was very important to the participants. This support system appears to act as an anchor for these women if situations became difficult.
McCabe also found that when people were more accepting of the situation, there was an increased need for social and emotional support., they also found that women with MS compared to men were more likely to seek social support, but more likely to wish that things were different. This is also supported by Olsson and Goretti. However, Olsson (2008) also found that accepting needing support from family led to feelings of guilt and failure as they felt that the whole family was suffering too. They also described being dependant on others when performing daily tasks that they wished to have done themselves. To engage in daily life was crucial in maintaining a good quality of life. This study only focused on women with the progressive form of MS, so are more likely to have more disabilities. McCabe states that increased needs may lead them to seek and obtain more social support and rely more on friend, family and community assistance (Murphy, 1998). Although support is