1. Salcido, Richard "Sal" MD

Article Content

Most of our current wound care literature gives the health care professional sole responsibility for wound management throughout the continuum of care. What we seem to be ignoring is the valuable contribution that lay caregivers make in the postacute continuum, specifically in the care of patients with chronic wounds.


In her book It Takes a Village,1 Hillary Rodham Clinton uses the African proverb to describe a collective effort to raise children and maintain the social structure and welfare of the extended family and community. This is not uncommon: For centuries, family members in most cultures have assumed primary responsibility for the care of another family member in need.


However, as Mrs Rodham Clinton points out in her book, what is changing is the current concept of family and community. We have moved from a local, well-defined family, community, or village to a global community with less-defined boundaries. In addition, we are stretching the definition of the family beyond the traditional nuclear or even the extended family. This can confound the practical issues we may encounter when establishing whom, beyond the home health care agency, will assume responsibility for providing primary wound care for a person with a chronic wound. Many of us have found ourselves training and ensuring the competency of a variety of nonprofessionals-a family member, extended family member, significant other (same or opposite sex), or a paid caregiver-to manage the person with a chronic wound.


The Survey Says...

One organization that has taken up the banner of lay caregiver issues is the National Family Caregivers Association (NFCA).2 This grassroots organization was created to educate, support, empower, and speak up for the millions of Americans who care for chronically ill, aged, or disabled loved ones in the home.


Recently, NFCA conducted a survey to quantify the number of persons who provide care for an elderly, disabled, or chronically ill friend or relative in the home. The survey showed that nearly 27% of the adult population had been involved in caregiving during the previous 12 months, more than double previous estimates.2 That translates to more than 54 million Americans, based on current US census data.2


Interestingly, the NFCA survey showed a dramatic shift in the gender of caregivers. Previous data indicated that 75% of family care was provided by women. The new survey shows a more even split: 56% women, 44% men.2 The type of care they are providing includes the following:


* 52% of survey respondents (39% of whom were men) provided physical care, including helping with dressing, bathing, toileting, eating, and mobility.2


* 46% of respondents (41% of them men) were involved in performing some type of nursing activity such as managing medications, changing dressings, or monitoring vital signs.2


The survey found that 54% of family caregivers are between 35 and 64 years old.2 Tending to a friend or relative during these key wage-earning years takes a huge toll on the financial well-being and earning potential of these workers. We rarely take this into account when we calculate the true cost of providing wound care. But as the US population ages, we will have to: The increasing prevalence of care provided in the home for chronic wound care, cancer, and other chronic illness is likely to result in higher direct medical and nonmedical costs.3 In fact, a study by Hayman et al4 emphasized the need to focus beyond professional costs and include the prevalence, time, and costs associated with informal caregiving for elderly patients needing palliative care.


Counting the Contribution

In wound care, we have not done much to factor in the contributions of lay caregivers. A review of the wound care literature reveals a paucity of peer-reviewed papers related to the cost, burden, education, and outcomes associated with lay caregivers providing wound care. But there have been a few. For example, Seaman et al5 describe how innovative and easy-to-use products support caregiver confidence and facilitate positive outcomes when caregivers are instructed on the techniques of dressing change. Brogna6 points to the tremendous opportunity for wound care practitioners to collaborate with home health care nurses and lay caregivers to help them manage complex wounds, ostomies, and continence care associated with early discharge from the hospital. Bentur and Moualem7 illustrate the need to develop specific areas of instruction and specific instruments or instruction for family members caring for homebound patients.


Clearly, there is an increasing need for wound care professionals to establish relationships with home health care agencies, lay caregivers, and patients receiving wound care in the home. In the near future, more families, extended families, significant others, and paid caregivers will be caring for persons in nonhospital settings, giving us a mandate to respond to the challenges and opportunities associated with the new definition of the wound care village.


Acknowledgement: Special thanks to Lisa Ann Barner and John Boothe, whose care for their respective spouses, Kenneth E. Barner, PhD,8,9 and Jill Kinmont Boothe,10 prompted this editorial. My interaction with these individuals reinforced for me the valuable contribution lay caregivers make on a daily basis.




1. Rodham Clinton H. It Takes a Village, and Other Lessons Children Teach Us. New York: Simon & Schuster; 1996. [Context Link]


2. Web site of the National Family Caregivers Association, Accessed August 15, 2001. [Context Link]


3. Panda SM, Coleman B. The high cost of at-home caregiving. Am J Hosp Palliat Care 2001;18 (3):157. [Context Link]


4. Hayman JA, Langa KM, Kabeto MU, et al. Estimating the cost of informal caregiving for elderly patients with cancer. J Clin Oncol 2001;19:3219-25. [Context Link]


5. Seaman S, Herbster S, Muglia J, Murray M, Rick C. Simplifying modern wound management for nonprofessional caregivers. Ostomy Wound Manage 2000;46(8):18-27. [Context Link]


6. Brogna L. Caring for caregivers: home care nursing's challenge. J Wound Ostomy Continence Nurs 1996;23(1):10-4. [Context Link]


7. Bentur N, Moualem A. The effect on family members of treating home-hospitalized patients. Harefuah 2001;140(5):386. [Context Link]


8. Salcido R, Barner KE. The Adv Skin Wound Care 2001;14:108,110. [Context Link]


9. Salcido R, Barner KE. The, part 2. Adv Skin Wound Care 2001;14:164,166. [Context Link]


10. Boothe JK. Living a full life with a spinal cord injury. Adv Skin Wound Care 2000;13:210,212. [Context Link]