EL VII DUQUE Y SU MECENAZGO LITERARIO
GASPARINI, CARLOS III Y SUS GABINETES EN EL PALACIO REAL DE MADRID
Moving on from a focus upon epilepsy as a condition, an exploration with regard to the effect upon People with Epilepsy (PWE) and carers, is needed in order to form a better understanding of this complex situation. Epilepsy and seizures not only have an impact on the life of the PWE but also upon their caregivers, family members, relatives, and their wider social circle (Mahrer-Imhof et al.,2013). Many aspects of this situation are discussed in the literature from different angles. As epilepsy is not the main theme of the thesis, only a selection of aspects surrounding the condition will be mentioned here, to indicate the many different perspectives of the situation and condition.
Schachter et al. (1993) have discussed how frequency of seizures affect an indi-vidual’s life with regard to their employment and the difficulty of affording necessary medical expenses arising from their condition. Their study revealed that PWE who were aware of the effects of their seizures were less satisfied with their medical care than those who were not. PWE who experience frequent seizures are at a higher risk than others of finding themselves in unemployment and underemployment. This risk is increased if seizures are poorly controlled (Jacoby et al., 1998).
Bautista et al. (2014) also highlighted the problem of societal integration of PWE. They focused on examining the factors that continue to impede their inte-gration with society, and how those impediments might be conquered by proposed solutions that might aid them. They discuss in detail, nine factors that influence integration of PWE into society. For example, suffering psychological co-morbidity as depression, anxiety and mood disorders. The ability to drive and the availabil-ity of transportation are important factors for PWE, by allowing them to travel to access medical care, to go to work and interact socially. The paper also examined factors that could affect family life, socioeconomic status, social stigma, and racial disparities.
Mortality rates of PWE are increased either from epilepsy itself (uncontrolled, poorly controlled seizures) or from an underlying cause. Mortality in PWE was
associated with recorded alcohol problems, having collected the last AED prescrip-tion, having an injury in the previous year, and having been treated for depression (Ridsdale et al., 2011; Cockerell, Hart, Sander, Goodridge, Shorvon and Johnson, 1994;Sperling et al.,1999). Holmes and McCagh(2014) also identified other issues regarding PWE who face difficulties managing their seizures, with regard to their social functioning. Cognitive shortfall, impact of stigma, co-morbid depression and anxiety, difficulties in employability and relationships, and social interaction are all factors that influence the psychosocial aspects of PWE.
On the other hand, Jacoby (1992) presented the psychosocial functioning of PWE who are seizure free, or have been for at least two years. This group of par-ticipants reported lower levels of distress over epilepsy, they also reported that they were well adjusted to their condition. The employment rate was in accordance with the general population rate. In contrast with those results is the rate of marriage among this group of participants, which revealed that they were slightly less likely to get married than the general population.
Suurmeijer et al.(2001) highlight the psychosocial variables affecting the quality of life of PWE, regardless of the physical status of their condition. The most signifi-cant variables were, stigma perception, loneliness, psychological distress, and finally adjustment and coping with epilepsy. Moran et al. (2004) emphasized that partic-ipants with severe epilepsy stated that the commonest reported impacts on PWE were: education and work, followed by driving, and then the impact of epilepsy on their psychological and social life (Martin et al., 2005; Hayden et al., 1992).
Sillanpää et al. (2004) have viewed the impact of epilepsy from another angle.
They investigated PWE who had the condition from childhood, and asked how it impacted their quality of life as adults. They concluded that the major impact of the condition was upon those still on medication, whether they were in remission or not, compared to the those who are in remission but off medication. The former group had rates of unemployment significantly higher than latter (p< 0.001) as well as lower socioeconomic status. All participants showed lower rates of marriage and of having offspring when compared to the control group, regardless of remission or
not.
It should also be noted that it is not only PWE who are affected by the con-dition, it extends to their caregivers. Although studies regarding the effects of the condition on family members are under-researched, some have discussed this issue, and highlighted the effects on them in addition to the emotional burden it imposes (Saada et al., 2015; Saburi et al., 2006). Furthermore, applying interventions re-garding PWE should be addressed with consideration of issues rere-garding the family members associated with their quality of life (Mahrer-Imhof et al.,2013).
A study conducted by Saburi et al. (2006) on the quality of life of adults with epilepsy, and their family’s reactions and behaviours that occur due to epilepsy, revealed that some families managed epilepsy negatively by concealment, fear, over-protection, and isolation of the PWE.Thompson et al. (2014) conducted an online survey to examine this issue. Their study revealed that safety and vulnerability concerns, in addition to the unpredictability of seizures, were likely to impose some challenges for the family’s day to day life, or even for planning a holiday. The in-ability to be in places as an entire family, the lack of time to spend with siblings and spouses, social isolation arising from not engaging in public events, frustration by finances, and unhelpful systems, were all examples of such challenges. All can lead to added stress, frustration, and exhaustion for family relationships and life dynamic (Cianchetti et al., 2015).
Saada et al. (2015) have examined the psychological effects of adult epilepsy on family members and caregivers. Negative experiences were not the only thing reported. In contrast, participants reported positive aspects such as the closeness and harmony gained within family members. It also created opportunities to support others and educate them. Family members gained more patience, empathy, and were more open minded about their situation as well as others. A family’s perspective about what is important in life may well change their priorities of what is really important.