Traumatic stress symptoms in family caregivers of patients with acute leukaemia: protocol for a multisite mixed methods, longitudinal, observational study

Abstract

IntroductionThe diagnosis, progression or recurrence of cancer is often highly traumatic for family caregivers (FCs), but systematic assessments of distress and approaches for its prevention and treatment are lacking. Acute leukaemia (AL) is a life-threatening cancer of the blood, which most often presents acutely, requires intensive treatment and is associated with severe physical symptoms. Consequently, traumatic stress may be common in the FCs of patients with AL. We aim to determine the prevalence, severity, longitudinal course and predictors of traumatic stress symptoms in FCs of patients with AL in the first year after diagnosis, and to understand their lived experience of traumatic stress and perceived support needs.Methods and analysisThis two-site longitudinal, observational, mixed methods study will recruit 223 adult FCs of paediatric or adult patients newly diagnosed with AL from two tertiary care centres. Quantitative data will be collected from self-report questionnaires at enrolment, and 1, 3, 6, 9 and 12 months after admission to hospital for initial treatment. Quantitative data will be analysed using descriptive and machine learning approaches and a multilevel modelling (MLM) approach will be used to confirm machine learning findings. Semi-structured qualitative interviews will be conducted at 3, 6 and 12 months and analysed using a grounded theory approach.Ethics and disseminationThis study is funded by the Canadian Institutes of Health Research (CIHR number PJT 173255) and has received ethical approval from the Ontario Cancer Research Ethics Board (CTO Project ID: 2104). The data generated have the potential to inform the development of targeted psychosocial interventions for traumatic stress, which is a public health priority for high-risk populations such as FCs of patients with haematological malignancies. An integrated and end-of-study knowledge translation strategy that involves FCs and other stakeholders will be used to interpret and disseminate study results.

Caregiver’s quality of life in advanced cancer: validation of the construct in a real-life setting of early palliative care

“…The caregiver burden can be present at any stage of the disease trajectory, but its entity and impact on the caregiver’s QoL may vary depending on the stage of the disease. In the early stages, the immediate reaction to the diagnosis often leads caregivers to experience traumatic stress-associated symptoms, identifiable as an acute stress disorder or a post-traumatic stress disorder, leading to an increased risk of cardiovascular, metabolic, and musculoskeletal issues as well as suicide ( 8 , 12 – 18 ). As the disease progresses, caregivers must provide more intensive care, manage multiple medications and treatments, and navigate difficult decisions about the end of life ( 13 – 15 ).…”

“…Similar levels of distress have been associated with poor physical health ( 10 , 20 , 21 ) and a higher risk of mortality ( 22 , 23 ). Moreover, as the terminal phase approaches, caregivers may also be coping with grief and anticipatory mourning ( 8 , 12 – 18 ). Furthermore, it should be noted that the caregivers’ emotional load does not end with the patient’s death.…”