Words for It — C A MacInroy

Outside the door

The wider system, policy, funding, and how care is organized around you.

What you might say	What the system calls it	Why it matters
"I don't know where to go to get care. I don't know who to call or what services exist."	Cosmopolitanismhow connected the system is to outside services and information	Knowing what exists, and how to reach it, is its own kind of work, and most families start with none of that knowledge. Some health systems address this with a dedicated navigator role, someone whose job is knowing what's available and connecting families to it. Where that role doesn't exist, families do the navigating themselves, with no map and no guide.
"He needs more than I can give, but we don't qualify for help. So it falls on me."	External Policy & Incentiveseligibility criteria that don't match lived need	Eligibility is usually based on diagnosis or income, not on what a caregiver can actually sustain. When someone falls in the gap between "too much to manage alone" and "doesn't qualify," the cost doesn't disappear, it shifts onto the caregiver. The recognized fix is eligibility criteria that account for caregiver capacity, not just patient-side measures.
"What's covered depends on whether he's in the hospital, at home, or in long-term care, and that can change overnight."	External Policy & Incentivesfunding tied to setting, not need	Care needs don't change based on which building someone is in, but funding and coverage do. This creates sudden gaps exactly when things are already unstable, gaps a caregiver is left to fill without warning.

Inside the system

How the organizations involved in care actually work, and don't, together.

What you might say	What the system calls it	Why it matters
"Nobody at the hospital talks to anybody at the home care agency, so I'm the one repeating everything."	Relational Connections & Communicationssometimes addressed through "network weaving"	This isn't just that information doesn't flow, it's that no one has been given responsibility for making it flow. Each provider may feel it's not their job to loop in the others. The recognized fix is actively assigning someone to make those connections, rather than assuming they'll happen on their own.
"I sign off on the care plan, but nobody follows it consistently afterward."	Implementation Leadsa plan without an assigned owner	Signing off creates a record that something was agreed to, but it doesn't create a person responsible for making sure it happens. The recognized fix is the same as elsewhere: name a person, not just a plan.

The Individual

How all of this lands on the person actually doing the work.

What you might say	What the system calls it	Why it matters
"Am I doing this wrong? Is this safe?"	Capability — Knowledge and Beliefsthe gap between what you know and what gets measured	Without anything to measure against, doing your best and doing it wrong can feel exactly the same. The recognized fix is building a way to see and name strain earlier, so the feeling has something real to compare itself to, preparing caregivers and recognizing their capability before it's tested by crisis.
"I can't do this anymore."	Burnout, but only after it's happenedthere's no recognized term for catching it before that point	Burnout gets treated as a personal limit reached, not a measurable, preventable pattern. Burden metrics, tracked over time, prove the system is creating dangerous working conditions, not that the caregiver lacks coping skills. Training, meaningful financial support, and full recognition of this as a full-time job are the real fix, not better resilience.
"I'm the one explaining his medical situation to the next provider, and I was never trained for that."	Access to Knowledge & Informationdoing specialized work without training for it	Medical translation, turning what's happening into language a provider needs, is a skill, and most caregivers are doing it without ever being taught how. This is exactly the kind of gap implementation science points at directly: someone is performing an important action, but no one was designated, trained, or resourced to be the person who does it.
"Everyone just assumed I'd handle it, the calls, the paperwork, all of it, without anyone asking first."	Individual Rolesa role taken on by default, never assigned	When a role isn't formally assigned, it's also never formally supported, or questioned. The recognized fix is the same one running through this whole page: name the role, name who's doing it, and build support around that, rather than assuming it'll just get done.
"They asked if I was his caregiver, or his POA. I said yes. That was it, nobody ever explained what that actually meant I'd be doing."	Actor identified, never specifiedAACTT	Confirming who's responsible isn't the same as saying what they're responsible for. The system got what it needed, who to call, who can make decisions. You didn't get what you needed: any sense of what the role would actually involve. The terms below spell out what some of these words actually mean.