Why Bother with Families after Brain Injury?

Marilyn Lash, MSW

Brain Injury Blog by Marilyn Lash, MSW

Friday, September 27, 2013

What do you really think about informing families?

I am constantly struck by the comment I have heard far too often by clinicians over the years, “You have to dumb it down for families.” Whether the comment is directed to explaining a diagnosis or treatment plan or writing a pamphlet or manual, I find that comment insulting, derogatory, and elitist. Every time I hear it, I am shocked that it still persists – and I more often than not hear it from people who I otherwise highly regard for their clinical expertise. Even more dismaying is the underlying mindset implying that families are not as intelligent as professionals  or clinicians…and perhaps not as worthy of attention.

I’ve worked in a variety of clinical, research and academic settings so I know from experience that writing for “consumers” –  the politically correct lingo these days for individuals with disabilities and family members – is not given the same status as work that is published in peer refereed journals or academic textbooks. Thanks to the advocacy of the disability community, many federal grants now require that findings be disseminated in other formats than scientific articles so that consumers can benefit from this new knowledge. But writing for families still takes a back seat far too often. There is still the perception that it is less lofty, less valued by peers, and less rewarded via the career ladder. When I worked in an academic setting, none of my writing for families was considered relevant for my faculty appointment because it was considered “less rigorous” and less relevant than my refereed journal publications. So why take on the extra work and do it?

Families say they need information but who will provide it?

Research findings and surveys consistently report that families need information about brain injury and need to have their questions answered honestly. This finding has been repeated in state after state as families have been surveyed about their needs over time. Regardless of how long it has been since the injury, the need for information in clear and understandable language is voiced again and again.

Families who are also caregivers need ongoing training, coaching and guidance for many years after their loved one’s brain injury. There is no expiration date on their need to expand, develop and refine their skills and knowledge about brain injury. The rehabilitation challenges, psychological issues, developmental impact, and aging issues for the survivor of a brain injury change and evolve over time so families need a broad array of resources, programs and educational materials. From a business perspective, they represent a life-long market. Why then have our health care institutions and community programs been so slow to respond?

It’s not that easy

I have several theories and admittedly they reflect my biases. First, is the perception that writing for families and survivors is easy. Why use a 1 or 2 syllable word when you can impress readers with a 3 or 4 syllable jargon? As editor of publications for our company, I often find that some authors are so accustomed to writing in the required academic research style that they have great difficulty changing to a more informal direct narrative. Second, sometimes it’s simply more work to write for families. You can’t just hit the copy and paste functions from those existing manuscripts and convert them into a document that is intelligible or relevant for families. You really have to start from scratch – and that takes time, effort and a commitment. That’s something not everyone is willing to do unless there is something in it for them….a publication, a promotion, a raise, royalties, etc.

Where are the benefits or rewards?

Finally, in today’s health care market that is increasing driven, controlled and constricted by finances and payers, companies are looking closely at that bottom line. When you think about the time and resources it takes to inform and educate a family about brain injury, where’s the payback for a company or program? Especially after the discharge date – is it really a case of “out of sight, out of mind?” Will it lead to a referral? Will it get funding or payment for a service? How does educating and informing families improve the bottom line? That’s the question and that is the unspoken bias.

Writing for families is not a billable charge. So how do we encourage clinicians and researchers to make this commitment? When educating families must primarily be done on evenings or weekends outside of company time, it’s no wonder that overextended professionals aren’t interested or willing to take this step. But it’s more than that. When it’s not an integral component of a treatment approach or a program philosophy, the implication is that supporting and educating families is not as critical or valued as clinical care and treatment.

Yet many programs give lip service to the inclusion of families with colorful brochures and posters. My response is, “Where’s the beef?” Show me the “how, where, why and when” of what you do to support and inform families. And show me not just one brochure or video, but show me proof of a long-term commitment that you are truly a partner with families in this journey of brain injury education and not just a ship passing in the dark night.

People do better when they are well informed. Isn’t it time we rethink our priorities?

13 responses to “Why Bother with Families after Brain Injury?”

  1. Barbara Mckenzie says:

    I think it is soooooo wonderful that so many of you have a caregiver/family that actually care. My family have distanced themselves from me, as to them, I am just making it up, it can’t take that long. They have NEVER been to a dr, specialist or the ACC in nz with me. They have NEVER read one of my reports, yet still think that I am making it up and should just GET OVER IT. One of my sisters told me that I should just put on Lycra and go to the gym every day. Yeah right ………… I am often too tired for that, and when out walking can sometimes not find the energy to get back.
    I would just love to know that other TBI sufferers have had this experience from their so called loving family.

  2. JoAnne Schreck-Morse says:

    Thank you for the article. I have had much trouble with doctors and clinicians not being able to glean from me just what I need as help. I do not seem to receive what I say about my needs. Things get missed for up to a few years until I have one doctor long enough to know me. The invisible illness of TBI with distinct communication issues means others may never actually know what I mean to communicate. As much loss has come after my accident due to mis-communication as has come from the loss of the ability to earn a living – possibly more with adequate time to give clear thought to it.

    My son is a medical school student also working long hours in the ER for six years years now. He has changed and now does not only that “dumb down” things with me when he and I used to engage in meaningful conversation. Not only has this been emotionally difficult for me, I don’t feel a family feeling to our relationship. I feel like I am at the doctor when I talk to him about almost anything. I feel patronized by the person who has best supported me and helped. I think I have said the words to him, “I am not stupid”, to which he replies, “I did not say you are Mom; I am just trying to help you.” He does not say, ok Mom, I just heard what you said and I will think about that and we will talk about it. When the change in him became the new normal, I felt such loss. Thank you for your words from a perspective of experience. I have similar experience and excellent perception. In other words, I can see with wisdom, however I find it almost impossible to communicate what I know well. J.S.M.

  3. Bruce Matzke says:

    I never finished my email.Here is the remaining part.

    My wife has two daughters from a previous marriage both about 35 years old. Either one ever respected 15 year relationship we had together for various reasons. Prior to the surgery the daughters demanded to know if I was going to be able to care for their mother’s medical and financial needs. In being honest, having read other caregiver stories on the internet, I said it probably would require all of us to take care of their mother.

    In a nutshell, Saturday morning the daughters told me that my wife was moving to Tennessee and where one daughter lives because I said I could not take care of her. And my wife agreed and said she did not want a divorce but she felt that she would be better off living with her daughter. WHAT?

    Well I never got a chance to ever speak with my wife alone after her surgery. After leaving the hospital she went to live with a retired teacher and my first attempts to talk to my wife on the phone just brought up more reasons that she want to leave me and that she wanted to divorce me.
    Except for a few calls from her about paying some bills and packing her things so her daughter could pick them up from the house to this day I have not heard from “my wife.”

    Needles to say I was devastated. No one in the medical community warned us about the possibility this occurring. It took me two weeks to find the brochure written by Taryn Marie Stejskal, Ph.D. explaining how a brain injury/surgery can change a person’s perception of their spouse. And in our case her daughters even said “well he loves her” and it was apparent to them that their mother did not want me out of her life; but over time they convinced her to divorce me.

    None of my friends really understand how much i hurt. In fact not until today after reading Janelle Breese Biagioni posts did I understand. I have been an attorney for over 30 years; and I would define the lack of information provided before the surgery, and the absence of any marriage counseling after the surgery is medical malpractice on the part of the surgeon , hospital and physical therapists. No I do not plan on any lawsuit, but if I could do something to prevent this from happening to another spouse I sure would.

    I think I am getting a little off topic here, but my situation is not as a caregiver. My wife was kidnapped from me making sure that I have no way to communicate with her. This situation would require a person that would be able to personally visit my wife and personally tell her how much I meant to her, I love her and miss talking to her. There are some other issues that concern me. She missed her first radiation chemotherapy session because the oncologist was not going to begin with her moving. Another issue is the possibility that her health insurance would not be valid in Tennessee and because she has only been there less than thirty days, is she even getting any medical treatment?
    It is just in the way her daughters behaved that showed they werre acting in their mother’s best interest.

  4. Bruce Matzke says:

    My wife was diagnosed with brain cancer on September 11, 2013. On September 13 she underwent brain surgery to remove a cancerous tumor the size of an egg. My wife and I prior to the surgery had a special relationship which had a foundation on spiritual principles. We also periodically hold each other acknowledging the love and spiritual connection we had with each other. I cannot say there weren’t issues in our marriage, like financial problems that my wife constantly worried about which was contrary to her knowing that God proves everything we need.

  5. Well presented points here Marilyn!
    Thank you.

  6. Casey Bachus says:

    I had a hard time finding information and support after my husband’s TBI. I was able to find a lot of medical information, but what I had difficulty finding was emotional support. I wanted the perspective of another spouse. There wasn’t a lot out there for me then. I decided that there needed to be so I wrote “How I Survived My Husband’s Brain Injury” to help the spouses and other caregivers.

  7. Maria Romanas, MD, PhD says:

    Marilyn, there is an excellent manual titled “HELPING YOUR FAMILY MEMBER TO RECOVER FROM HEAD INJURY” available for FREE download at givebackorlando.com. It is approximately 140 pages in length and is written in language that is easy for all to read.

    There is also a companion manual titled “SELF-THERAPY FOR TRAUMATIC BRAIN INJURY: TEACHING YOURSELF TO PREVENT HEAD-INJURED MOMENTS” available at the same website.

  8. Mary Murtagh says:

    As a caregiver in a facility I unfortunately see the break in communication on a daily basis.At my company we the program associates and day program workers try to speak with the families when ever we can.I encourage the family to be involved come to all meetings and be on the family commities.
    Diane I have seen people come in when their parents have still been able to be apart of the transition and it is much easier for the person to transition rather then wait till after they were left alone due to illness or death of ageing parents.I can only pass on my experience and there is so much transition with people ,therapies,depression,the move that the grieving process does not get to truly get to be dealt with it then become seen as behaviors.Please look for placement while your loved one still has you to help them cope with if at all possible.For other’s try going to the direct care staff they usually know your loved one better then anyone and can help you to get the information you need or get the info to the busier person you may need to address your concerns :).Hope this helps in some way.

  9. Tracey Anne Miller says:

    Thank you Marilyn for your candid statements which are all too true! Our families need a voice that can express our very same concerns. I am my only immediate family member left and have not seen my brother in over three and a half years. This is not because I do not care, it is the abuse and neglect in some of our supposed esteemed facilities towards my brother and myself when I have raised unethical and unprofessional behaviors. We have lived in a culture where people do not examine what goes on behind closed doors. Nice to see some of these doors now being opened.

  10. Marilyn Lash says:

    Dear Susan,
    Thank you for your comment and I will remember your writing interest.
    Marilyn Lash

  11. Marilyn Lash says:

    Dear Diane,
    Thank you for your note. I understand your worries about your son’s future and unfortunately this is a worry shared by many aging parents. I suggest starting with the Brain Injury Association in your state to explore any residential services and funding options.
    Marilyn Lash

  12. diane baker says:

    Your article struck a cord with me. My husband and I have been caring for our son who is TBI, total care 24/7 for the last eight years. My biggest concern is what will happen to him when we are gone, we are both 70. Where do we look for help, no family members have shown an interest in providing for his care. We have set up a special needs trust fund, but who will care for him is the looming fear of our lives. Any information would be helpful.

    Diane Baker

  13. Susan Leayr says:

    You are so correct. We all flounder out here with the big words. Neither the clients or their carers are wanting to be left in the dark. Professionals only see people in a certain setting. Carers are there all the time and need to explain things to themselves and other interested parties. After all they are left looking after all these symptoms and behaviours bundled up in a person they love. Everyone else can go home to their families ,but carers and the injured are left often drowning in the unknown. I would be willing to write things from a brain injured persons perspective if you needed a hand and had the patience to help me.


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