“Supporting the Supporters “

Patients with chronic pain who live at home, often require help with activities of daily living, basic medical care (e.g., injections), social needs, and patient advocacy. Most of that support comes from intimate caregivers, typically members of the patient’s family. These family caregivers are often women who have inevitably made some workplace adjustments to work while giving unpaid care. Thus, they require support so that they can be effective and maintain their well-being while caring for the patient with chronic pain. Research shows that support for caregivers contributes to achieving these goals.

PSO proposes a four-part framework to support family caregivers:

(1) assess caregivers’ needs using formal measures, just as the chronic patient’s own needs are assessed,

(2) educate caregivers for their caregiving roles, most notably, with training in the low-level medical support that cancer patients require at home,

(3) empower caregivers to become full-fledged members of the patient’s team, all working toward common goals, and

(4) assist caregivers proactively in their duties, so that they retain a sense of control and self-efficacy rather than having to react to imminent medical crises without sufficient resources at their disposal.

Funding support for family caregivers requires refocusing on the overall well-being of the patient-caregiver dyad rather than just on the patient. It will necessitate a paradigm shift in reimbursement that recognizes the need for holistic chronic pain care.