Assessment of the Burden of Care and Quality of Life of Caregivers in Schizophrenia

Abstract

As a disabling and severe psychiatric disorder with either episodic or continuous evolution, schizophrenia has a dramatic impact not only on patients suffering from it but also on their caregivers (Awad and Voruganti 2008; Caqueo-Urizar and Gutierrez-Maldonado 2006; Caqueo-Urizar et al. 2009; Testart et al. 2013; Zendjidjian and Boyer 2014), both on institutional and natural (family) caregivers (Van Humbeeck et al. 2002). Due to the move from traditional institutional care to community care of psychiatric patients, family caregivers now assume functions that were performed by psychiatric institutions in the past (Caqueo-Urizar and Gutierrez-Maldonado 2006; Caqueo-Urizar et al. 2009; Ochoa et al. 2008; Reine et al. 2003; Gutierrez-Maldonado et al. 2005). Caregivers are usually unpaid nonprofessionals who have significant input in the care and support of people affected by severe psychiatric illnesses. In the specific case of schizophrenia, the majority of caregivers are the parents of the patient, followed by brothers/sisters, and rarely friends who quickly lose interest in continuing the friendship (NAMI 2008). According to the preliminary results of the European Federation of Associations of Families of People with Mental Illness (EUFAMI) international survey, approximately three of four (72 %) caregivers living with individuals with schizophrenia are mainly or solely responsible for caring, placing a huge emotional and physical burden on them (EUFAMI 2014). Family caregivers perform their caregiver role for an average of 16 years, are likely to have to do so for the rest of their lives, and report an average of 23 h a week of caring. Having a family member with schizophrenia results in care burden, stress, fear, and embarrassment about the illness signs and symptoms, including violence, uncertainty about the course of the disease, lack of social support, and stigma. This amount of care also equates to a part-time job (EUFAMI 2014). Family caregivers of people with schizophrenia give up employment or take time off work to provide care and support. The UK-SCAP study estimated that 4.8 % of family caregivers had terminated employment, and 15.5 % took a mean of 12.5 days off work per year specifically as a result of being a caregiver. This amount translates to a mean annual economic loss of £517 (707 Euros or 814 USD) per individual with schizophrenia in the household (Andrews et al. 2012). As in other chronic diseases, it is now well documented that caregiving may have an impact on both the patient suffering from schizophrenia and their family caregivers. Caregiving leads to a higher risk of mortality of the caregiver (Harvey et al. 2002) and to the deterioration of his own health (Caqueo-Urizar et al. 2009; Lua and Bakar 2011; Moller-Leimkuhler and Wiesheu 2011; Zamzam et al. 2011), and several studies have reported that caring for a patient with schizophrenia resulted in a significant and substantial burden (Glozman 2004; Li et al. 2007), lower quality of life (QoL) (Boyer et al. 2012; Caqueo-Urizar et al. 2012), restricted roles and activities, and increased psychosomatic, anxious, or depressive symptoms (Awad and Voruganti 2008; Schulz and Beach 1999). The family caregivers often experience grief and have to cope with stigma and social isolation, which leave them with a feeling of shame, embarrassment, or guilt. Caregiving was most often thought to be a negative phenomenon; however, it is increasingly recognized that caregiving is not only associated with negative consequences, but the caregivers also experience subjective gains and satisfaction (Cohen et al. 2002; Szmukler et al. 1996). The caregiving experience can promote a sense of accomplishment, companionship, fulfillment, enjoyment, and improved self-esteem, and some families can be brought closer together when someone is in need of care. However, according to the preliminary results of the EUFAMI survey, approximately one-third of caregivers report positive experiences of providing care, but positive caregiving experiences are eclipsed by the degree of dissatisfaction with the lack of support from care professionals (EUFAMI 2014).

Appendix: The Schizophrenia Caregiver Quality of Life Questionnaire (S-CGQoL)

The information contained in this questionnaire is strictly confidential. We are asking you to answer these questions because it will help us in assessing the quality of your daily life as well as the general state of your health. We would like to better understand the impact of caregiving on your quality of life.

Please answer each question by ticking the box that describes as closely as possible how you have felt for the last 12 months. Some questions concern your private life. They are necessary to evaluate all aspects of your state of health. However, if you feel that a question does not concern you or if you do not wish to answer it, skip it and go on to the next question.

Thank you

For each question, tick the box that corresponds to how you have felt for the last 12 months.

Thank you for your participation.