How Care Coordinators Can Reduce Stress for Family Caregivers

If you’re a care coordinator, you work hard to provide patient-centred care. This critically important concept—patient-centredness—gets a lot of attention, even outside of health care professions.

But there’s another concept that care coordinators strive to embody—one that deserves a lot more consideration than it receives. We’re talking about family-centred care.

All too often, the family members of at-home patients wind up taking on coordination tasks. In some cases, they carry out continuous follow-up phone calls with specialists—a task that can be draining and time-consuming. In others, they continuously monitor their loved ones’ care, a practice that can seriously disrupt their lives.

But things are starting to change. In Ontario, health care leaders have recognized the value of carefully coordinated home care. In very complex patients, access to care coordinators is now seen as a given.

That said, there are family members who will continue their coordination efforts—no matter how much work you do with a patient. Often, these devoted loved ones have had past bad experiences with health practitioners who weren’t in sync.

Unfortunately, coordination is stressful, and it’s almost always a burden to the families who struggle with it. As a care coordinator, you know how the system works. And you can help family members navigate it. But first, you may need to prove your dedication.

Family members: the silent coordinators

According to a 2012 report from Statistics Canada, an estimated 29% of Ontarians are family caregivers. Many struggle to balance full time employment with caregiving duties—a dilemma that can lead significant personal and financial consequences. Burnout and the health issues it can cause are also a risk.

For caregivers, there’s no shortage of day-to-day challenges. Performing certain medical procedures—such as injections—can cause great anxiety. Helping with the activities of daily living can be mentally and physically exhausting. And then there are the “extra” responsibilities, like care coordination.

Frequently, the complexity of coordination-related tasks goes unrecognized. As just one example, it’s easy to drastically underestimate the time it takes to contact various health care agencies and doctors’ offices on the phone.

As a care coordinator, you’re well aware of this issue. Your position exists in part because provincial leaders have recognized it, too.

Even family members who might not consider themselves caregivers are often burdened with coordination tasks.

Consider the man who takes time off of work to drive his dad to the oncologist—only to learn that the doctor hasn’t received a set of crucial test results. This son could live hours away from father and still be involved. Once he notices gaps in coordination, there’s a good chance he’s going to try to fill them himself.

Family members are sometimes referred to as “silent” care coordinators. Because all too often, nobody but their  loved one is aware of their efforts.

Luckily, you can help. By seeing and validating the efforts of families, you help them understand just how vigilant you are. Providing reassurance can prove to family members that you’re watching their loved one closely.

Provide guidance through transparency & education

Depending on who you ask, home care can include a whole lot of support that falls outside of the clinical realm. From homemaking to transportation, many services fall within this grey area.

Unfortunately, families don’t always know precisely what’s publicly funded—or whether their loved ones qualify for a given service or program. Family members who want the very best at-home care for their loved ones may sign on for extra help they can’t afford.

Needless to say, financial hardship—or the fear of financial hardship—can ensue. And trying to find answers alone can be a challenge. For many family members, the back-and-forth with agency officials can compound existing stress.

This issue was explored in a recent report from Ontario’s Expert Group on Home and Community Care. The document recommended that the government clearly define an available “basket of services.”

As a care coordinator, you’re an expert on existing services and eligibility. And part of your job is educating patients and their trusted family members on how the system works. Ongoing information from a highly credible source can provide a lot of relief.

In some cases, you may even be in a position to suggest patients for pilot programs aimed at improving care coordination. When connecting the circle of care is the goal of these programs, the whole family can get involved.

But honesty extends beyond guidelines and health care policy. While patient and family-centredness are ideals you should constantly strive for, you also work as part of the health care system. As such, it’s your responsibility to ensure that patients and their family members truly understand the potential impacts of their decisions.

In short, ongoing education and decision support is a must for patients and families.

Getting it right: family-centred care

When it comes to demonstrating reliability, keeping a patient’s family in the loop regarding his care is key. Of course, there are challenges involved in providing the all of the information that’s needed. Time constraints. Finite resources. The busy schedules of individual care team members.

Luckily, digital solutions are becoming more accessible and user-friendly. With the right circle-of-care app, family members can connect with their loved one, their loved one’s care coordinator, and any member of his care team—all from their mobile devices. The peace of mind this accessibility offers is unprecedented.

Providing general information about the home care sector is also important. It will build your trust with family members by showcasing your expertise. More importantly, it can provide options that caregivers don’t even know they have.

For example, many people who care for loved ones are be aware that $20 million in respite care was recently pumped into the Ontario health care system. But how might this change impact them? You can help by ensuring that family members know their options.

On the whole, providing family-centred care is about understanding the pressures that family caregivers deal with. It means having frank discussions about available resources.

But conversations with family members can also be tricky. The patient is, after all the recipient of care. It goes without saying that his perspective is more important than any other. So how can you find the right balance between engaging a patient’s family and protecting his privacy?

Of course, the Personal Health Information Protection Act (PHIPA) provides important guidelines. But not every situation can be summed up or addressed. Confusing situations are bound to arise—and sometimes, you need to trust your judgement.

The bottom line

For the family members of at-home patients, a care coordinator can be a huge source of comfort and support. In many cases, your job may include not only providing coordination, but proving yourself to families.

Many of these well-meaning caregivers are used to taking on the work that care coordinators are best equipped to do. The consequences they face may be personal, financial, or health related.

It’s high time that the family members of home care patients focus on the love and support that only they can provide.

Feature image courtesy of EmsiProduction

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COPD Education – Onboarding

Objective

To complete a thorough needs assessment / initial evaluation for a COPD patient of an outpatient clinic

Actors
Patient, Educator (Nurse, RT, the Physician could also be the educator)

Timelines
One 60-90 min session with the Educator

Description
  • This protocol should be established for all COPD patients from a given clinic, independently of whether they are new patients or they are known to the clinic. This protocol is the basis to engage the patient into other protocols such as education, exacerbation follow-up, etc.
  • We need to identify patient goals/concerns to guide the interventions
  • A thorough evaluation is carried on, with the objective of understanding where the patient is on their disease journey and follow-up treatable traits: dyspnea, exacerbation or dyspnea and exacerbation.
  • It includes the use of objective questionnaires such as the mMRC, CAT, HADS, Frailty Scale, etc.
  • Identify if the patient needs to be referred to other resources (e.g. Physiotherapist, social worker, occupational therapist)
  • Once Onboarding is completed, the patient continues to the COPD Education workflow
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COPD Education – Continuous Maintenance

Objective 

To cover in depth all the necessary elements of self-management education as per the LWWCOPD, with priorities based on patient goals and identified treatable traits

Actors
Patient, Educator (Nurse, RT or Physician)

Timelines
A number of “Core” educational modules have been identified which cover the basic COPD education from the LWWCOPD program. Additionally, optional modules can be used to respond to patient needs. The timeline (frequency, number of modules to be covered at a given education session) is fully customizable, although we recommend to have education sessions every 2-weeks during the “active” phase of education. Once this is completed, the patient continues to the Maintenance Mode (see below).

Description
  • Launched at the onboarding protocol
  • Provide basic overview of COPD self-management based on LWWCOPD (medication adherence, inhaler techniques, PLB technique & energy conservation) up to the development of an Action plan for early exacerbation recognition and management.
  • Prioritize self-learning by the patient (e.g. watching videos, reading educational materials, completing homework) in addition to live sessions with the Educator. Educational materials are sent to the patient directly via the platform, and become the patient’s own library. The Educator can customize which “homework” the patient receives.
  • Educators have access to “User guides” to standardise their educational intervention. These user guides include: objectives, interventions, suggested questions, evaluation of self-efficacy, and learning contracts for each module.
  • Once the core education is completed, the patient can continue to the Respiratory Status Follow-up Workflow (run in parallel)

The Maintenance Mode
  • As soon as the maintenance mode is engaged, the frequency of visits Educator/Patient is reduced to once every 6 months.
  • During the Maintenance Mode sessions, the educator has access to all the education modules and can choose any piece of content that needs to covered with the patient. 
  • A streamlined evaluation (similar to the initial eval.) is done during each “maintenance” visit to identify any substantial changes on the patient’s needs that will require some adjustment. The patient could come back to an “active” education mode (more frequent education sessions, e.g. every 2 weeks).
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COPD Respiratory Status Follow-up

Objective

Monitoring of stable patients from a clinic in order to identify early any aggravation of symptoms (exacerbation) and implement an action plan

Actors
Patient, Educator (Nurse, RT or Physician)

Timelines
Scheduled regular automated follow-up to the patient symptoms. Intensity/Frequency can be adjusted by the Educator depending on patient needs (e.g. daily, every week, etc.). Ongoing through the year.

Description
  • Launch: Patients who have completed the Core Educational including setting-up an action plan.
  • Regular automated questions allow to identify any change in patient’s symptoms and severity.
  • If an exacerbation is detected the patient gets a reminder to engage their self-management strategies while waiting for the Educator to call back.
  • An alarm is generated for the Educator, so they immediately call back the patient. At this call they will evaluate any further intervention required and schedule additional follow-up.
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