BACKGROUND: Cognitive impairment associated with schizophrenia (CIAS) is highly burdensome and the severity of such symptoms can impact the burden of care. The chronic nature of schizophrenia incurs substantial burden to the caregiver - whether family or professional (social workers, case manager etc) - from the shift of burden of care from inpatient hospital services, with four main areas of burden being identified in the literature: daily “hassles”, and financial, emotional, and physical burden. Recent guidance/standards, including clinical, Health Technology Assessment (HTA e.g., NICE), are beginning to recognize the value of evidence demonstrating the alleviation of carer provision for patients with a medical condition (e.g., for decision making), particularly those with neurological and psychiatric conditions that arguably impose the greatest burden on caregivers. However, existing research focuses mostly on primary (i.e., family) caregivers as opposed to secondary caregivers (i.e., professionally trained). The present study therefore aimed to provide a preliminary overview of objective caregiver burden experiences (defined in the literature as the effects on the caregiver in respect of daily tasks) from CIAS symptoms among both primary (family, informal) and secondary (professional, formal) caregivers.
METHODS: In a COA content validation interview study, a question asking about the caregivers’ experiences of the cognitive functioning issues they had observed in the patient, elicited spontaneous data pertaining caregiver’s experience of burden. Subsequently, a secondary, qualitative, inductive thematic analysis was conducted on this burden-focused data.
RESULTS: Findings revealed two overarching themes: 1. Caregiver difficulty (Subthemes: Hard to continue care, Hard to improve their quality of life, Constant additional and extra work[load], Hard to teach/unable to learn, Difficult to communicate with patient, and Blame [in the firing line]), and 2. Caregiver necessity (Subthemes: ‘Without my care they wouldn’t get things done’, and Financial budgeting – reminders and remedials). Our analysis demonstrates both caregiving difficulty and necessity to be high across the dataset and irrespective of whether a primary or secondary caregiver was interviewed.
DISCUSSION: Consistent with the literature, the requirement for the assumption of extra work and role responsibilities was central to the high level of caregiving difficulty and necessity found among both primary and secondary caregivers of patients with schizophrenia. Financial impacts were described as a necessity. Experience of frustration was mentioned by one caregiver and no further evidence emerged regarding the emotional, or the physical aspects of caregiving. To be able to present adequate evidence in accordance with the contemporary HTA guidance, further work is warranted inclusive of subjective caregiver burden experiences (defined in the literature as the extent to which the caregivers perceive the burden of care) associated with CIAS. Moreover, due to the multidimensional nature of caregiver burden, additional facets need to be incorporated in future studies, including incidence of financial costs, depression, time of work, shame, embarrassment, guilt, self-blame, gender, ethnicity, and culture. A noted limitation is the secondary analysis nature of this study, conducted on data acquired from a study with a different objective. Nevertheless, this research highlights the importance of incorporating caregiver burden experiences in schizophrenia, and the need for further work to acquire richer caregiver burden data.
