"Anatomy of an Illness": control from a caregiver's perspective

Abstract

Caregivers of loved ones with chronic illnesses experience an uncontrollable challenge with potentially negative behavioral and medical consequences. Extensive research has demonstrated immune and endocrine regulation can be significantly disrupted by negative behavioral factors based on both animal models and human studies. However, fewer studies have focused on how psychosocial interventions might reverse the negative consequences of stressors such as caregiving. The distress of caring for individuals with cancer has only recently begun to receive attention. These interventions addressing caregiver distress are rare overall and caregivers of patients receiving hematopoietic stem cell transplants (HSCT) have received even less attention. HSCT caregivers report feelings of loss of control. Animal studies suggest that control over aversive events can mitigate the negative consequences of stressors. Caregivers of allogeneic HSCT patients for blood cancers must be available 24/7 for three months or longer following stem cell infusion to closely monitor the recipients' health and well-being. Does establishing a greater sense of control have positive impacts on caregivers? A randomized control trial of a cognitive behavioral stress management intervention for allogeneic HSCT caregivers is briefly described. A model of caregiver mental health which may potentially impact the patient's quality of life is proposed. These relationships exist in a complex system that includes genetic influences, sex, social environment, and prior experience. This system fits well within recent formulations of a "complexity science" approach to health and well-being.

Keywords: Animal models; Caregiver; Controllability; Cortisol; Helplessness; Hematopoietic stem cell transplant; Inflammatory markers; Natural cytotoxicity.

Figure 1

A conceptual model of the impact of a psychosocial intervention on caregiver behavioral and physiological markers and potential influences on their patient. The bidirectional interaction between stress, mood, and caregiver mental and physical health is proposed to be significantly influenced by a supportive cognitive behavioral stress management intervention that can be individualized to the needs of any caregiver group. Biomarkers move in a direction suggestive of improved caregiver health and well-being in the presence of such an intervention. However influences on the biomarkers are equally as complex as the behavioral factors. The caregiver is proposed to influence patient outcome and their quality of life (broken arrows) both directly (better care) and indirectly (patient sees their loved one as less distressed). Improved patient status will also have positive effects on the caregiver. This model is proposed to be completely interchangeable such that the patient could be placed in the location of the caregiver (that is receiving the intervention). However, both members of the dyad should be included in an intervention whenever medically possible. All of these relationships exist on a complex system including the effectiveness of the interventionist to background moderators such as genes, aging, the social environment, and early experience.