How we CARE: Quantifying caregivers’ dysphagia-related experiences

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Title: Creation and Initial Validation of the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Screening Tool
Authors: Shune, Resnick, Zarit, & Namasivayam-MacDonald
Journal: American Journal of Speech-Language Pathology
Year of Publication: 2020
Design Type:  (online) Questionnaire
Purpose: “The purpose of this study was to develop and test a simple screening tool to identify dysphagia-related caregiver burden and to determine whether the tool could be used as a universal screener across multiple populations”
Population: 26 family caregivers of people with dysphagia
Inclusion criteria: Caregivers were eligible to participate if they answered affirmative to the following question: “Are you thecaregiver of afamily member who you are living with?
Exclusion criteria: Unable to locate but likely caregivers of those that do not have dysphagia


How many times do we as clinicians think of our role as simply to work with our patients? Sounds a little obvious, right? Well, as the saying goes, sometimes we can be so focused on what’s obvious we “can’t see the forest for the trees.” Where yes, we absolutely work with our patients, but that should not mean involving and addressing caregivers should fall by the wayside.

Yes, we absolutely need our patients to be able to complete certain exercises for improvement, follow certain strategies, or be informed about various risks, recommendations, and rationales. But who’s gonna be there after we leave when our session is done?🤔😬

It’s going to be a spouse. A sibling. A parent. A child-turned-caregiver. Or possibly a hired member. These are the people who we also need to engage and ensure have the understanding needed to facilitate, assist, and educate when we are no longer there after a session, as well as long after therapy ends.

But how can we identify what they need from us in order to help them?😓

That’s just what this ground-breaking study looks to find out for us!🤓


The authors make a pretty great case-for-their-cause right from the get-go, explaining not only how there’s no current tool to address caregiver burden specifically relating to dysphagia (whaat?!😱), but also how caregiver burden can impact the actual person with dysphagia’s quality of life and progress:

“Indeed, increased caregiver burden and distress have been associated with worsened care recipient physical, behavioral, and psychological health outcomes; increased risk of care recipient institutionalization; and decreased care recipient quality of life.” p.2

They also give a nice comparison to some widely-used screens (e.g. Yale Swallow Protocol) to explain why a simple, quick, easy-to-use, and translatable screening tool can facilitate early identification of dysphagia-related caregiver burden, which can then lead to earlier intervention and warranted resources and referrals to improve the health and quality of life for both caregiver and patient with dysphagia.

Really, a tool like this is the first step to let us know if it’s necessary to go down a more windy road with our services that’s likely to have some identified stops made by the caregiver in order to provide more education, referrals, or specific training. OR, if it’s ok to go down more of a smooth road with maybe only a few quick stops along the way.

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But first, we gotta create it!

So with admittedly pretty broad criteria for being included by simply answering “yes” to being a caregiver of a family member and also indicating some sort of burden due to the person’s reported swallowing difficulties (14 total surveys had to be tossed because of these missing links), the authors got their total 26 participants from their online survey.

Who were the caregivers/care recipients in their sample?

Caregivers:

  • average age: 49 years old (25-77 y/o range)
  • 92% female
    • 42% caring for their child
    • 35% caring for partner/spouse
    • 19% caring for a parent

Care recipients (those with dysphagia):

  • 35% under age 18 years
  • 65% adults
    • 56% over 65 years old
  • All care recipients experienced swallowing difficulties according to their caregivers
  • 89% with diagnosis of dysphagia
  • Wide range of medical conditions (e.g. neurological, cardiac-related, respiratory, structural abnormalities, cancer, congenital disorders)

What kind of survey was given??

And more importantly:

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Similar to talented quilters creating their patterns, designs, and beautifully intricate products, the researchers put their screening tool together like purposeful patchwork by incorporating relevant theories and existing models to structure their work:

Zach Burden Interviewo (ZBI)
  • The Feeding/Swallowing Impact Survey (FS-IS)
  • biopsychosocial–spiritual model
  • Because the authors already have expert knowledge in the area of dysphagia-related caregiver-burden, they were easily able to come up with the foundation for questions, drafts, and multiple consensuses and keep trimming things down for the best bang-for-your buck:

    “The potential question items appeared to cluster around two separate topics: items related to changes that have occurred as a result of the dysphagia and caregivers’ appraisal of those changes and items related to caregivers’ subjective experience of how dysphagia has impacted their lives.”

    “The final CARES Questionnaire contained 26 items divided across two subscales: Part A— Checklist of Behavioral and Functional Changes (10 items) and Part B—Measures of Subjective Caregiver Stress (16 items).” p.3

    After creating their official screening tool, they also made sure to get lots of feedback from all the respondents to make sure if any questions were confusing, redundant, issues not addressed or the response options weren’t adequate. If you think all that work sounds pretty plain and simple, guess again! And if you’re also thinking these persistent researchers would stop there…

    They also incorporated additional measures to gauge not only the caregivers’ perception of their person with dysphagia by having them complete the EAT-10o, but also matched the reported/diagnosed dysphagia with the IDDSI-FDSo.


    When you create something from scratch, there’s always gonna be a lot of results and things to unpack, so let’s start from the beginning:

    First, we need to know if this created measure is something to be used! We do this by asking lots of questions:

    (For a review of these kinds of questions and terms and what they mean go check out the previous review: Tom-ay-to, Tom-ah-to, TOMASS! Testing mastication and swallowing!)

    Is it Valid?

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    • Does the tool/test do what it says it does?
    • ‘How well the tool was able to differentiate those high or low in dysphagia-related caregiver burden’

    The analyses for this looked at not only the tool as a whole but also scrutinizing item by item to make sure the poll was actually asking the right questions to get the right answers:

    “The items that were easiest for participants to agree with and endorse included “Extra time is required for mealtimes” and “Managing my loved one’s swallowing difficulties takes away from other things I would prefer to be doing” (Part A) as well as “I am scared that my loved one will choke” and “I feel stressed” (Part B).” p.7

    It also found that the additional measures incorporated into its foundation were also justifiable and appropriate:

    “Caregiver reported dysphagia-related burden, as measured by all CARES scores (Part A, Part B, and total score), was positively associated with the EAT-10 and the ZBI, such that increased dysphagia-related burden was associated with increased perceived dysphagia severity and increased general caregiver burden.”

    “Furthermore, Part A of the CARES (Checklist of Behavioral and Functional Changes) was negatively associated with the IDDSI-FDS, such that increased dysphagia-related caregiver burden related to behavioral and functional changes was associated with increased diet restrictiveness.” p.7

    Is it Reliable?

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    After the specific math-magic with coefficients, alphas, and a lot of letter-number-sign language that I forgot decades ago, overall they found while after the single administration, Part B appeared more internally consistent/reliable compared to a close attempt from Part A, the specific items ended up being a lot lower than desired, with a rationale to prove as always more follow-up studies will be needed!

    “This set of measures is particularly susceptible to a small sample size, and thus, these lower values may suggest that the sample size was not large enough to confirm the item difficulty hierarchy rather than indicating an underlying issue with the measurement tool itself.” p.10 

    Curious what the caregivers thought about the tool?

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    So obviously because the small sample was pretty heterogeneous with a mix of this and that for ages, medical diagnoses, difficulties, and different roles it would of course be a monumental task to ensure every voice and concern is heard and accounted for. Unfortunately, those giving care to children were a larger minority for closely aligning with the tool, while a few others felt financial burdens were also not addressed in the tool. Tube feeding was also found to be another topic overlooked by some along with difficulty accurately capturing “burden over time,” with one caregiver describing the difficulty “to answer [questions] about changes in the last month” because there were none at the time.

    Unfortunately, since screening tools generally aim to be quick and short, the researchers can’t include everything and address every type of burden, so they made sure to stick to the dysphagia script instead of veering into less swallow-related territories (e.g. navigating the healthcare system, caregiver time spent, etc.) which actually may be more appropriate for other tools already in existence.

    For a better indication into one caregiver’s mind when it came to the question if all questions addressed dysphagia-related caregiver burden:

    “The dysphagia is only one part of the larger burden of caring for someone after a devastating stroke that has affected everything to do with how muscles work together. Speech, mobility, swallowing, and mentation have ALL changed and become quite stressful, and I cannot totally separate out caregiving burdens ONLY based on dysphagia. It’s a complex package deal.” p.9

    And to that, regardless of whatever we as clinicians, researchers, or any professionals are trying to prove, really should hit the hardest to ensure at the very least, interdisciplinary, individualized approaches are a must in our patients’ and their caregiver’s care. 🙏🙏


    From there, the investigators had a lot to think about in editing, revising, and improving the CARES tool after this pilot test. But before making changes, the authors did find some important takeaways:

    • restrictive diet (NPO vs. modified texture) ⇒ dysphagia-specific caregiver burden
    • Caregivers for those with tube feed needs may reflect different experiences and burdens (and may require an even more specific tool)
    • CARES might not be the best tool to accurately capture the burden experienced by caregivers of children with dysphagia
    • CARES is an adjunct piece of the ultimate puzzle and cannot replace critical conversations with caregivers
    • CARES may be “less beneficial for caregivers at certain points in the recovery process (e.g. acute severe dysphagia vs mild/chronic dysphagia)

    “Thus, if a clinician is interested in capturing change in dysphagia-related burden, which is likely to occur with recovery and/or disease progression, the CARES tool could be administered by clinicians at set time points to determine how burden is improving or worsening with time.” p.10

    After acknowledging the multiple limitations in the pilot study (nonresponse bias because of the online platforms for recruitment, small sample size, lack of objective measures of swallow function), the authors are also quick to look to the future with larger groups of specific patient populations, cutoff scores, and different ways to try to predict dysphagia-related caregiver burden to focus on appropriate solutions and interventions.

    How can you use this article?!?

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    Dr. Shune made sure to emphasize that while revisions and updates continue to be made (like knowing which specific areas are most burdensome so we can prioritize!), this tool can still be used in its current form since this preliminary validation proves sound!

    Just think about the possibilities across the healthcare continuum…🤔🤩

    Home Health/Outpatient 

    The more I read, the more I could instantly see myself using this, particularly in the home health or outpatient settings, where there typically is a LOT more burden placed on the caregiver(s) given the a) ever-increasing rate of diagnosis & discharge out of medical facilities, and b) obvious decrease in constant medical support.

    Acute/Inpatient Rehabilitation 

    While overall critical medical issues are often the main focus here, obviously we still talk to, facilitate, assist, and educate caregivers as much as we are able to (and I’m certain my fellow acute SLPs can attest that is a very true fact as far as scheduling goes!). So this tool could still be quite useful to at least get a sense if there are additional areas we may have overlooked, assumed weren’t as needed, or even to recommend address at the next level of care! If anything, as mentioned it can also be used to judge if the caregiver burden is getting better/worse as time, recovery, and transitions continue.

    Skilled Nursing

    The real middlemen and go-between who sometimes get stuck with the most complicated yet least support, could this not be used to continue to educate the expected new changes during your interventions in anticipation before a discharge home? Or even re-educate anything we stairway-sprinting acute SLPs would possibly miss out on (sorry!🥺)

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    Could there possibly even be additional screen tools for each specific medical setting? (home-health vs acute?), or even a way to see which one of these settings the tool would be most effective and beneficial in?🤯

    Could we standardize this to be included across the healthcare continuum in order to really see if the burden gets better as a patient transitions from one setting to the next? Or if there might be too much overlap, not enough, or if all the caregiver education and resources just become too confusing??😓

    How could we see if there are certain differences between different ethnicities, cultures, economic statuses, regions, etc. to ensure we are remaining inclusive and acknowledging certain discrepancies?🤔

    An interesting point I was even able to bring up to Dr. Shune during a great (free+recorded🤩) NFOSD Webinar was the very interesting generational fact for a new paradigm of stress/burden that’s likely to grow with the increasing number of adult children caring for the large “baby boomer” population as they continue to age.

    I can’t be the only one thinking about these things right guys?!?!😉


    I, for one, will be on the lookout for when this screening tool becomes officially official! Because whatever setting you’re in, I am sure it can be helpful in some way, big or small, to help us not only improve our patients’ recovery and quality of life but also do the same for their caregivers so they can continue with what they need. And that is something we can all cheers to!🥂🥳

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    Takeaways:

    • “The CARES screening tool is a valid, easy-to-administer, and simple-to-score, 26-item checklist that is able to detect dysphagia-related burden, particularly among caregivers of adults with swallowing difficulties. It is significantly correlated with measures of general burden and dysphagia severity.”
    • “Results from the current study provide initial support for the validity and reliability of this measure across a heterogeneous group of individuals providing care for individuals with dysphagia”
    • “there was evidence of internal consistency; and, as expected, there were significant relationships between dysphagia-specific burden (CARES) and perceived swallowing impairment (EAT-10), general caregiver burden (ZBI), and diet restrictiveness (IDDSI-FDS).”
    • “it is important to note that the CARES screening tool is not intended to be used in isolation or in place of conversation with caregivers”


    Article Referenced: FREE ASHA ACCESS

    Shune, S., Resnick, B., Zarit, S., & Namasivayam-MacDonald, A. (2020). Creation and Initial Validation of the Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Screening Tool. American Journal Of Speech-Language Pathology29(4), 2131-2144. doi: 10.1044/2020_ajslp-20-00148

    Some additional recent and relevant publications from the research team:

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