Abstract:
The heart and lungs are vital organs that are essential for leading active and functional lifestyles. Heart and/or lung conditions affect people’s ability to function normally and greatly diminish quality of life. Heart and lung transplants are lifesaving procedures for patients with end-stage heart and lung disease, however ongoing adherence to immunosuppressant medication is critical for the maintenance of a healthy functioning graft. Research indicates surprisingly high rates of medication nonadherence in transplant patients, and while a large body of research has investigated various factors that contribute to this, the findings are inconclusive. Studies looking into illness perceptions and medication beliefs, based on the Common Sense Model and the Necessity-Concerns Framework, have found that patients’ illness perceptions and beliefs about medication impact patients’ adherence to their immunosuppressant medication. However, no studies to date have looked at caregivers’ illness perceptions in transplant populations. This study aimed to investigate illness perceptions and medication beliefs among heart and lung transplant recipients and their caregivers. More specifically, it aimed to explore the influence of caregivers’ illness perceptions and medication beliefs on patients’ adherence. Participants were recruited from the Cardiac/Heart & Lung Transplant Services at Green Lane Hospital and completed a postal questionnaire. This included the Brief Illness Perceptions Questionnaire (BIPQ), Beliefs about Medicines Questionnaire (BMQ), Immunosuppressant Therapy Adherence Scale (ITAS), Patient Health Questionnaire (PHQSADS), and Dyadic Adjustment Scale (DAS-7). Other questionnaires captured patients’ specific emotional responses as well as personal experiences. A total of 145 heart and 102 lung transplant patients and their caregivers participated. Only patient-caregiver dyads were included in the final sample which comprised of 102 heart and lung transplant patients and 102 heart and lung transplant caregivers. Most, however not all, caregivers were spouses of the patients. Correlational analyses demonstrated that heart and lung transplant patients’ and caregivers’ perceptions about the transplant and beliefs about medication were significantly correlated with patients’ adherence. Patient and caregiver factors associated with adherence included female patient gender, higher patient perceptions about personal control and lower negative emotional representations, lower medication beliefs about general harm, higher relationship satisfaction and better medication literacy, as well as higher caregiver perceptions about treatment control, higher caregiver beliefs in terms of medication necessity, lower general harm and lower general overuse beliefs. Hierarchical regression demonstrated that caregivers’ perceptions of treatment control impacted patient adherence over and above patients’ own illness perceptions and medication beliefs. This is the first study to demonstrate the importance of caregivers’ illness perceptions and medication beliefs on patient adherence. The clinical implications of this research are that transplant patients caregivers’ should be included in discussions about treatment and their concerns should be addressed. Future research could investigate caregivers’ beliefs in other transplant groups and possibly develop and test an illness perception intervention for patients and their caregivers to improve adherence.