What questions should providers ask caregivers about themselves?

[Alies Maybee]

I am working on a project with The Change Foundation to improve the situation for caregivers and need some help.

What are the most important questions to ask caregivers that will help providers identify and assess their needs and what's most important to them.

We are trying to come up with 1-3 questions that will help start the conversation. A conversation that isn't universally happening yet and needs to.

Here is the draft example of potential questions to prompt thought.

Thanks, Alies

[Anita Lambert-Lanning]

Hi Alies,

the 5 ?s listd are good but the one about supports is best IMHO. That is not to say that the others are not good ?s but stresses/supports/time/money are usually the factors that get to the heart of the matter. If they can be teased out with the other ?s like "need for team supports" that is good but generally (given every situation is slightly different) it is important to get some baseline info prior to asking caregivers what they need specifically.

Assess who may be 'at risk' then survey the system for supports that can actually support. If those options can be 'known' then list them straight up or leave an open ended ? to let responders do that for you.

Limits to open ended ?s are that they have to be analysed differently so good to establish baseline for major needs then move ahead to the details of help that can actually be provided.

all the best

anita l-l

[Alies Maybee]

Thanks for the feedback Anita. Alies

[Denyse Lynch]

HI Alies, Everyone .... sharing my lessons in the absolute critical importance of the communication "receiver" to understand the context of a discussion question. I refer to my not knowing the context of "what questions providers should ask caregivers". All I read was the question, in an email from Alies, asking for my input.

Today in catching up on the PAN site, I realized Alies' email I received with just the question came from her work with The Change Foundation. As a result, I interpreted Alies' open question "literally" AND replied:

"It depends on the context and which provider (their role) to whom a caregiver is speaking."

Whack..THUMP...yikes.... I MISSED THE POINT COMPLETELY.. and took off in another direction replying about the need in communication for "providers to position their questions to the caregivers (why they are asking questions and what those questions are).... the "how to" of asking questions, not, "what questions."

This lesson has provoked me to always ensure my understanding of the context of questions, especially when we are the communication "receiver". Reading is an activity we conduct our own, in isolation from the communication "sender" to whom we cannot, immediately & ask for clarification, as in verbal interactions. This then, led me to think about the projects in which we engage and receive copious quantities of reading material. My process experiences with researchers' writings are: (1) reading through the material to first see what & how well I understand it - if clear, then I can proceed to participate in what I am asked to do; if not clear then, (2) I re-read it, underlining/highlighting what is unclear, be it the language used, the construction of sentences, paragraphs, how the material is laid out/formatted, on the page, noting terminology foreign to me (3) formulating clarification questions (3) constructing my own communication to send via email to the sender then (4) waiting for clarification from the original sender and (5) re-reading and seeing how well I can then comprehend the material.

Written communications are so very important for both sender & receiver. The sender has the responsibility to consider their audience and write for their audience's perspective(s) understanding, comprehension. Unfortunately, I see more health providers' writing geared to health care providers, academics, not for the comprehension of our diverse universe of patients, caregivers. I must confess, as enthusiastic and passionate I am about certain projects, I have walked away from them due to the amount of time I found I to SPEND in trying my best to comprehend.

The receiver has an equal responsibility.... to comprehend. And when we don't, that responsibility is to return to sender for clarification so we can comprehend. I have started doing that, instead of quietly hoping if I just follow along, eventually, it will become clearer. Lesson learned with this approach - it does not. How can the sender improve, meet our need for understanding without feedback? But for patients, caregivers, it takes good communication skills, courage, patience and being fearless.

So, Alies, :))))), if I left you scratching your head about my response, and wondering if I was on the same planet :))) , apologies, do forgive, please. And this is the "beauty" of PAN - " our safe mother-house", where we can grow in understanding, learning, sharing. I will give more thought to the question now that I have the context and get back to you!

Thanks & Very Best, Denyse

[Alies Maybee]

Denyse, I realize that I am too terse in my explanations. Will try and do better. The goal is to find 1-3 questions we can suggest providers ask caregivers to prompt a conversation to uncover caregiver needs.

I did receive some good feedback from members both online and off line. In the end I summarized the 3 questions that providers should consider asking caregivers:

• How are you coping today?
• What is the one thing that you find difficult about having the additional role of providing support and care for your (parent, spouse, child, ...)?
• How has the rest of your life been affected by your role as caregiver? Work, friends, family, health...

The idea is to make it simple for providers to start a conversation with caregivers about how they are doing so as to identify what kind of help the caregiver needs for themselves. This is in addition to any help the caregiver needs to actually take care of their patient.

Hope that helps and any further thoughts you have are most welcome. Alies