This chapter focuses on understanding the caregiving experience and its interdependence with primary caregivers' mental health, physical health, and perceived self-efficacy over time while providing long-term care for children with neurodevelopmental disorders (NDDs). Thus, it is imperative to prepare the primary caregivers to provide effective care, as well as look after one's own physical and mental health. The primary objective of the study was to explore the factors influencing self-efficacy among caregivers through a mixed-method research design. To understand the level of self-efficacy among primary care providers of children with NDD, the caregiver self-efficacy scale (CSES-8) was administered, and to explore the factors influencing caregiving self-efficacy, one-on-one interviews were conducted. Comprehension of the factors influencing self-efficacy would enable healthcare and other allied healthcare providers to effectively address the supportive needs and improve positive resources for the caregivers in personal, behavioral, and environmental domains.
TopBackground
Social cognition is a multidimensional construct. Social cognition refers to “how people appraise, remember and utilize the information in social context to predict one’s own and other's behavior” (Bulgarelli & Molina,2016). Social Cognitive Theory (SCT) is described as “the reciprocal interaction between individual experiences, the actions of others, and environmental factors on subjective experiences and health behaviors” (Bandura,1977). SCT emphasizes an individual's previous behaviors, cognitions, social environment, and physical environment when predicting future behavior (Wong & Monaghan,2020). Social cognition is well-studied among the population diagnosed with psychosis ranging from early onset to long-term clinical presentation and also in individuals with other chronic mental disabilities (Dickerson,2015; Oliver et al.,2011; Sharp et al.,2008; Uekermann et al.,2010; Lavoie et al.,2014). However, there is a dearth of studies related to social cognitive aspects among family caregivers providing care for individuals with disabilities.
A central idea of SCT is self-efficacy. According to Bandura’s SCT, self-efficacy refers to “a person’s belief about their ability to organize and execute courses of action to manage given situations” (Bandura, 1997). Self-efficacy has immense effects on diverse psychosocial functioning, it determines the initiation of coping behaviors, sustaining efforts during obstacles, and vulnerability to emotional distress and depression (Bandura,1997). Self-efficacy influences human behavior through cognition, motivation, mental and emotional well-being, and goal-directed behavior and decision-making (Bandura & Ramachaudran,1994). Although the self-efficacy model has been widely used in research on chronic stress and coping, it was not so long ago that the construct has been adopted for study with family caregivers (Steffen et al.,2002).
Caregivers are known as the hidden patients (Roche,2009) with caregivers experiencing consequences from their caregiving roles such as lack of appetite, weight changes, depressive symptoms, anxiety, social isolation, and an increased mortality rate due to extended and rigorous caregiving (Adelman et al.,2014; Perkins et al.,2012). The responsibility of caring for a sick or disabled family member is often taken up by one or more family members at home. Family caregivers or informal caregivers are family or community members who have a personal relationship and voluntarily provide assistance or care to the dependent person without receiving any remuneration (Almehmadi & Alrashed,2023). In this context, the primary caregiver is defined as the family member providing primary care for the dependent. Family caregivers experience unique challenges related to the disease or disability that they are providing care for. Family carers engage in assisting care recipients in activities of daily living (ADL), adhering to difficult medication schedules, and navigating through complex treatment procedures (Currow et al.,2006). Carers provide physical, mental, emotional, spiritual, and financial support that may be intensive and complex, yet their role as caregivers and their health and personal needs are least acknowledged (Hebdon et al.,2021).