Counseling the Caregiver Focusing on caregivers—in addition to the client—may help improve treatment outcomes. Here’s how to tailor that care. Make It Work
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Make It Work  |   July 01, 2015
Counseling the Caregiver
Author Notes
  • Rebecca Hunting Pompon, PhD, is a lecturer and researcher in the Department of Speech and Hearing Sciences at the University of Washington. She trains student clinicians in counseling approaches, and facilitates stroke caregiver support groups. rhpompon@uw.edu
    Rebecca Hunting Pompon, PhD, is a lecturer and researcher in the Department of Speech and Hearing Sciences at the University of Washington. She trains student clinicians in counseling approaches, and facilitates stroke caregiver support groups. rhpompon@uw.edu×
  • Michael Burns, PhD, CCC-SLP, is a lecturer and researcher in the Department of Speech and Hearing Sciences at the University of Washington. He is an affiliate of ASHA Special Interest Group 10, Issues in Higher Education. mburns@u.washington.edu
    Michael Burns, PhD, CCC-SLP, is a lecturer and researcher in the Department of Speech and Hearing Sciences at the University of Washington. He is an affiliate of ASHA Special Interest Group 10, Issues in Higher Education. mburns@u.washington.edu×
  • Diane L. Kendall, PhD, CCC-SLP, is a professor in the Department of Speech and Hearing Sciences and director of the Aphasia Laboratory at the University of Washington. She is an affiliate of SIG 2, Neurophysiology and Neurogenic Speech and Language Disorders. dkendall@uw.edu
    Diane L. Kendall, PhD, CCC-SLP, is a professor in the Department of Speech and Hearing Sciences and director of the Aphasia Laboratory at the University of Washington. She is an affiliate of SIG 2, Neurophysiology and Neurogenic Speech and Language Disorders. dkendall@uw.edu×
Article Information
Special Populations / Autism Spectrum / Research Issues, Methods & Evidence-Based Practice / Language Disorders / Aphasia / Attention, Memory & Executive Functions / Traumatic Brain Injury / Make It Work
Make It Work   |   July 01, 2015
Counseling the Caregiver
The ASHA Leader, July 2015, Vol. 20, 30-32. doi:10.1044/leader.MIW.20072015.30
The ASHA Leader, July 2015, Vol. 20, 30-32. doi:10.1044/leader.MIW.20072015.30
“I walked out of that session and immediately burst into tears,” admits the mother of a preschooler with autism.
“This is NOT what I signed up for!” exclaims the 34-year-old whose husband sustained a traumatic brain injury a year ago.
“I’m exhausted, and no one gets it,” says the man in his 60s, describing the past seven years since his partner’s stroke.
With their loved ones’ life-changing events and diagnoses, this parent, spouse and partner all face a different life filled with new and challenging responsibilities—all under the title of “caregiver.”
Speech-language pathologists and audiologists are trained to counsel clients on issues surrounding communication disorders. But when we hear these types of comments from caregivers, how should we respond? After all, we have only a short time with each client, and clearly the client’s progress is our foremost responsibility.
Several qualitative and quantitative research studies (see sources below) indicate that the caregiver and family system have a critical impact on a client’s progress. Although traditionally we have viewed caregivers as communication partners, we now realize the caregiver’s role is so much more: advocate, interpreter, “therapist,” case manager and more.
Caregivers often provide far more “therapy” than the clinical team. They are a primary part of the client’s family system, and the characteristics of that system—norms, dynamics, priorities and stresses—affect not only the client’s outcomes, but also the caregivers’ health and well-being.
So, given that clients with high-functioning families appear to have better rehabilitative outcomes, how can we help the caregivers?
Results of a survey of 38 family caregivers at an aphasia retreat suggest that caregiver needs and perspectives change over time. To help most effectively, clinicians may want to recognize the different stages and incorporate a few specific support strategies in their work with clients, caregivers and families.
In the beginning
In the first 18 months after the event or diagnosis, the caregiver’s focus is client-centric: Will he or she survive, have another stroke, go back to work? How can I support her? When will life get back to normal? How independent should he be?
Caregivers in this stage may focus on immediate and basic needs of the client, living day-to-day in an adrenaline-fueled “get-it-done” mode. They may also feel scared, emotional and overwhelmed. At this stage, family and friends are often available to help.
To assist caregivers during this stage, clinicians can:
  • Ask “How are you doing?”

  • Use active and reflective listening: Really hear and acknowledge what caregivers have to say.

  • Use multi-modal communication: Say it, write it, graph it, draw it and hand it to the caregiver. Repeat key points.

  • Educate on the course of rehabilitation and recovery: “Rehab (or treatment) is a lifelong process….”

  • Administer the American Medical Association’s (AMA) Caregiver Self-Assessment Questionnaire. This self-assessment, scored by the caregiver, can illuminate unhealthy aspects of caregiving, such as exhaustion, isolation and burnout. Clinicians can use the results to encourage caregivers to seek the support necessary to stay healthy and a viable member of the care team.

A few years in
  • Caregivers who are 18 months to five years after event/diagnosis have often figured out what their loved one needs, and are grappling with acceptance of their altered lives. They want to support the loved one wherever he or she is, but they wonder, “Is this it?” As they adjust to their new normal, they may feel angry, stressed and burned out, especially in the face of dwindling offers of help, eroding friendships and often challenging finances. They may start experiencing stress-related health consequences of their own.

  • Caregivers in this stage need clinicians to:

  • Encourage self-care, including support groups and other forms of support and assistance.

  • Repeat: Rehabilitation is a lifelong process.

  • Administer the AMA caregiver questionnaire to check in and remind the caregiver of his or her own health and well-being.

The long haul
After five years, caregivers may turn their thoughts from the client to themselves: “What about me?” They may have adjusted to a new life, but may miss the old life and the person their loved one used to be. They may have formed new social circles, but miss their old friends. Some of their old feelings and reactions may resurface, but they often have more coping resources. If they are back to work, they may appear more “put together” and people around them are apt to think all is well.
Caregivers in this stage need clinicians to:
  • Check in—“How are you doing?”—even if the caregiver seems to be coping well.

  • Remind them they need to stay engaged in their loved ones’ course of care, as well as healthy and self-focused.

  • Use the caregiver questionnaire.

Involving the caregiver in our work with clients yields multiple benefits. By understanding the potential needs of caregivers, and spending a few minutes listening to their concerns and perspectives, we can build trust and rapport, establish a therapeutic partnership, promote the health and well-being of the family system, and improve the likelihood of positive treatment outcomes for our clients.
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Sources
Christensen, T. M., Skaggs, J. L., & Kleist, D. M. (1997). Traumatic brain injured families: Therapeutic considerations. The Family Journal, 5(4), 317–324 [Article]
Christensen, T. M., Skaggs, J. L., & Kleist, D. M. (1997). Traumatic brain injured families: Therapeutic considerations. The Family Journal, 5(4), 317–324 [Article] ×
Michallet, B., Le Dorze, G., & Tétreault, S. (2001). The needs of spouses caring for severely aphasic persons. Aphasiology, 15(8), 731–747. [Article]
Michallet, B., Le Dorze, G., & Tétreault, S. (2001). The needs of spouses caring for severely aphasic persons. Aphasiology, 15(8), 731–747. [Article] ×
Visser-Meily, A., Post, M., Gorter, J. W., Berlekom, S. B., Van Den Bos, T., & Lindeman, E.(2006). Rehabilitation of stroke patients needs a family-centered approach. Disability and Rehabilitation, 28(24), 1557–1561. [Article] [PubMed]
Visser-Meily, A., Post, M., Gorter, J. W., Berlekom, S. B., Van Den Bos, T., & Lindeman, E.(2006). Rehabilitation of stroke patients needs a family-centered approach. Disability and Rehabilitation, 28(24), 1557–1561. [Article] [PubMed]×
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July 2015
Volume 20, Issue 7