Quality of life among parents of children with epilepsy: A preliminary research study

Highlights

• Flexibility was found to be an important coping resource for parents of children with epilepsy.

• Loneliness of parents of children with epilepsy was linked to lower quality of life.

• Economic state of parents of children with epilepsy was linked to lower quality of life.

• Enhancing coping resources is essential in promoting parents' quality of life.

Abstract

Purpose

The current preliminary study was based on the principles of positive psychology orientation when examining the multidimensional construct of quality of life (QOL): the physical functioning, psychological functioning, functional state, and social functioning among parents of children with epilepsy. We assessed the contribution of loneliness and personal resources, namely optimism and flexibility, to parents' QOL.

Method

The study was conducted at a multidisciplinary center for epilepsy in a central hospital in Israel. Forty-eight parents agreed to participate in a preliminary research study and completed a battery of self-report questionnaires.

Results

Significant negative correlations were found between flexibility and the scores on the four components of QOL (higher scores on the QOL scales indicated lower QOL). Optimism was not found to be associated with the scores on QOL. High levels of loneliness were found to be associated with higher scores on the four components of parents' QOL. Among sociodemographic variables, only the economic situation (due to illness) was linked negatively to the scores on QOL components. Flexibility and economic situation were the significant variables that accounted for the explained variance of total QOL.

Conclusion

The results of this study highlight the importance of flexibility in effectively managing the stressors that might be associated with childhood epilepsy. These results suggest that psychosocial intervention providing coping strategies for the family might improve QOL. Moreover, a parent's economic situation seems to be an essential part of the psychosocial assessment, and assurance of the optimal utilization of financial rights and facilities may improve their QOL.

Introduction

Children with epilepsy and their parents had been reported as having high levels of distress [1], [2]. The health status of the child depends partly on the psychosocial situation of the parents; parental functioning and parental well-being are, in turn, influenced by the child's health status [3], [4], [5], [6], [7].

Parents of a child with epilepsy must cope with the burden of daily care related to the illness and must constantly adjust their parenting to the condition's changing demands [1], [8]. Because of the important role that parents play in their children's psychosocial condition, especially during an illness, we chose to focus the current study on the parents' quality of life (QOL). Quality of life is the the degree to which an individual's life experiences satisfy his/her wants and needs satisfies his/her wants and needs (both physical and psychological) [9]. According to Montanaro et al. [10], QOL in regard to epilepsy is a multidimensional construct comprising four different domains: physical functioning, functional state (the ability to carry out a great range of daily activities), psychological functioning (affective and somatic states), and social functioning (an individual's ability to maintain social relations with peers, members of the same family, and other adults).

The current preliminary research study is based on the principles of positive psychology orientation when examining parents' QOL. As proponents of the positivist orientation, Seligman and his colleagues emphasized the need to attend to positive rather than to pathological aspects of life events [11], [12]. This accentuation of positive psychology coincides with the general human wish to lead more productive and fulfilling lives and to identify and nurture talents [13]. Increasing positivity and focusing on the traits, strengths, and diverse coping mechanisms not only bolster coping and happiness [14] but also reduce negativity and pathology [15].

In light of the above statement, the theoretical framework used to guide this research was adapted from the Conservation of Resources (COR) theory suggested by Hobfoll [16], [17]. This theory defines resources as “objects, personal characteristics, conditions or energies that are valued in their own right or that are valued because they act as conduits to the achievement or protection of valued resources” (p. 339) [16]. The primary tenet of this theory is that the more resources an individual loses because of stress, the less he or she will be able to adjust successfully [18].

The first psychosocial resource to be assessed among parents of children with epilepsy is dispositional optimism, which is defined as a person's tendency to approach life with a positive outlook and anticipate favorable outcomes from challenging events [17].

Considerable evidence suggests that optimism is beneficial for psychological well-being, especially during stressful situations or transitions [18], [19]. Thus, optimism can function as a protective factor that promotes resilient adaptation, as was found among individuals with cancer [20], coronary heart disease [21], and postpartum depression [22]. In light of the above statement, we sought to examine the association between higher optimism of parents and QOL.

Another psychosocial resource is flexibility, defined as an individual's ability to identify a situation's changing demands as they evolve and to employ the appropriate coping strategies to meet those demands successfully [23]. Flexibility has been positively linked to low levels of distress [24]. Another aspect of flexibility concerns the capacity to regulate negative emotions effectively. The regulation of negative emotions can involve a variety of skills such as controlling impulses, positively reappraising stimuli that might initiate a negative emotional experience, inhibiting various evoked emotional responses according to situational demands, and processing one's emotional experiences effectively [25], [26]. Thus, our second research question sought to examine the association between higher flexibility and QOL. Social functioning is also a central component of the evaluation of QOL. Regarding this aspect, we aimed to explore feelings of loneliness among parents of children with epilepsy. Loneliness is the subjective evaluation by an individual of his/her level of social contact and is sometimes characterized as being the counterpart of social support [27]. A cross-sectional and longitudinal analysis showed that loneliness is a specific risk factor for depressive symptoms, and higher levels of loneliness are associated with more depressive symptoms [28]. Loneliness was also found to cause stress and anxiety, which in turn engender increased loneliness [29]. Accordingly, we sought to examine the relation between higher levels of loneliness and QOL.

In summary, the objective of this study was to assess the associations and contributions of loneliness and personal resources, namely optimism and flexibility, to the QOL of parents of children with epilepsy.