Why Bother with Families after Brain Injury?
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?