The Chronic Wound and the Family

Abstract

Stressful life events, such as coping with a chronic wound, often compel families to reorganize their style of functioning.

The Family Stress Theory, developed by Professor Reuben Hill, provides one explanation for the family’s adjustment process as it faces a crisis event. The effects of caregiving on families and their health are just beginning to be understood, and only a few studies have explored the experiences of families caring for people with chronic wounds. However, application of the Family Stress Theory and available research may help clinicians understand how families react and respond to health alterations and guide practice when the family is an integral part of the intervention.

  Every year, nearly one million Americans develop chronic wounds.¹ These wounds include pressure, diabetic, arterial, and venous ulcers, as well as wounds from surgical complications. In a chronic wound, the normal, timely process of repair is disrupted and healing time can vary from weeks to years. Many factors (eg, infection, diabetes, cardiovascular disease, renal insufficiency, nutritional impairment, incontinence, immobility, and medication) impede wound healing. All these factors influence the level and type of care a patient requires which, in turn, affect the family. In addition, individuals with chronic wounds often face psychosocial as well as physiologic challenges,² which also affect their families. The healthcare provider needs to consider these challenges when caring for individuals with chronic wounds.

Family Stress Theory

  The Family Stress Theory helps explain how families react and respond to health alterations and guides nursing practice when the family is an integral part of the intervention. The theory also helps assess family changes during a member's acute or chronic illness.³ The ABCX model of family stress adaptation in the family stress theory describes how the interpretation of stressors by the family and the available resources of the family can determine if the event is a crisis or a non-crisis situation.⁴

  A stressor consists of those life events or occurrences that are of sufficient magnitude to bring about a change in the family system. The stressor event, however, is only a stimulus that holds the potential for beginning the process of change or stress. The family's perception and family system's resources determine whether the stressor event becomes a crisis.⁵

  Hill⁶ defines crises as "those situations which create a sense of sharpened insecurity or which block the usual patterns of action and call for new ones." Three variables determine whether an event becomes a crisis: the hardships of the situation itself; the resources of the family, its role structure, flexibility, and previous history with crisis; and the way the family defines the event.⁶ According to Patterson and Garwick,⁷ "Major stressful life events, particularly those that have chronic hardships, create a crisis for families that often leads to reorganization in the family's style of functioning." The family stress theory describes the adjustment process the family goes through when it faces a crisis event as a roller coaster experience. After experiencing the crisis, the family goes through a downward period of disorganization, an upward period of recovery, and then a new level of reorganization.⁴

  According to guidelines specified in the ABCX model in the family stress theory, a chronic wound is a life stressor that can influence the family and its capability to cope and adapt. In Hill's model, A is the stressor, B is the existing resources, C is the family's perception of A, and X is the crisis.⁶ A chronic wound can be a stressor (life event) that affects the family and may produce a change in the family social system. A chronic wound may alter a family member's mobility, self-esteem, and role in the family, altering the family structure and role functions. The family member with a wound may create a financial hardship on the family by decreasing income and/or increasing expenditures related to cost of care and supplies. The presence of a chronic wound may decrease the opportunity and/or desire for sexual intimacy, alter the ability to shower or bathe, or produce an offensive odor and drainage. If infection occurs, intravenous antibiotics may be needed. The resultant need for IV supplies, antibiotics, and strangers (home health nurses) visiting may all increase stress levels. Space for supplies may become an issue, as boxes of wound care products and intravenous supplies accumulate, and the family's schedule may have to revolve around wound care, medication, and home health care visit schedules. Ms. Z's situation is a case in point.

  Ms. Z, a young female accountant, fractured her distal tibia. Internal fixation was performed, and 3 weeks later, infection occurred and the incision dehisced. After an incision and debridement (I + D), the wound was left to heal by secondary intention. A second I + D was performed with sequential debridements. Osteomyelitis developed and a peripheral intravenous central catheter (PICC) line was inserted. The patient was started on an intravenous antibiotic regimen every 12 hours while at home. At the same time, the open, draining wound with exposed dying tendon and nonviable tissue in the wound bed on her distal lateral leg continued to deteriorate.

  A treatment program of pulsed lavage three times a week and vacuum-assisted closure (VAC) was initiated. The patient's husband was unable to adjust to the tubing and equipment (VAC) in the bed and reported being afraid of dislodging the tubing and PICC line, so they started sleeping apart. The patient's work schedule was limited to adjust to her antibiotic and wound therapy schedule. Boxes containing antibiotic and IV supplies, wound supplies, and VAC equipment were stacked in the living room.

  Ms. Z's wound care continued for more than 6 months. Medical expenses related to this wound were greater than $20,000, not including the costs of surgery. According to the patient and her husband, their resources and perception of the impact of the wound had a major role in their adaptation to this crisis. Ms. Z reported that her extended family supported her, along with her church and her faith, but her relationship with her husband was stressed because of the duration of the wound.

  The availability of a family's resources to meet the demands of stressor hardships enable the family to move to adaptation. The ability of the family to adapt depends on its ability to be united through common interests, affection, and sense of economic cooperation. It also depends on its ability to adapt and subordinate personal ambitions to family goals, to agree about its role structure, and to successfully meet the psychosocial needs of its members.⁸

Literature Review

  The National Family Caregivers Association (NFCA) has compiled statistics related to family caregiving.⁹ Based on a random sample survey conducted by Bruskin research, NFCA published a report in 2000 and estimated that 54 million people have been caregivers and that one-half of the United States' population has a chronic condition. Of these, 41 million are limited in their daily activities. Twelve million are unable to go to school, work, or live independently. Men now make up 44% of the caregiving population. Elderly caregivers with a history of chronic illness who are experiencing caregiving-related stress have a 63% higher mortality rate than their non-caregiving peers; 61% of these intense family caregivers (those providing at least 21 hours of care a week) suffer from depression.

  The NFCA conducted a caregiver survey using a random digit dialing (RDD) probability sample telephone survey of more than 1,000 adults conducted by Bruskin Research of Edison, NJ (see Table 1).¹⁰ Although the data are not specific to chronic wounds, they indicate the size of the caregiving population and the magnitude of problems caregivers face.

  Using Heideggerian hermeneutics, a phenomenological approach, Neil and Munjas¹¹ conducted a qualitative study of the psychosocial aspect of living with a chronic wound among 10 patients. The authors found that not only are family participation and interactions important, but also that the wound often affects the entire family. The recurrent problems and frustrations the patient experiences affect family functioning. Several themes emerged from their data, including "noticing" the wound (family members often noticed the wound before the patient did), "oozing and smelling of the wound," losing sleep, pain, isolation, and mobility deprivation.

  Orsted et al¹² described three patients and their stories to illustrate the complexity of caring for individuals with chronic wounds. They found that caring for people with wounds requires an understanding of the whole person in the context of his or her environment, experiences, and beliefs. The authors used the Patient-Centered Clinical Method, a model in which the biophysical problem, the disease, and the illness experience of the patient in the context of the patient's environment, beliefs, and life experiences are explored.

  Pieper et al,¹³ in a study of 32 patients, found that a larger wound area was associated with greater illness-induced problems in the home environment, such as greater psychological distress and poor quality of life. In addition, they found that pain was associated with greater difficulties in the home. A larger ulcer area also was related to poorer family relationships and difficulty in performing household duties. This study used the Psychosocial Adjustment to Illness Scale (PAIS) to gather data. The PAIS contains questions that cover seven domains of psychosocial adjustment: healthcare orientation, vocational environment, domestic environment, sexual relationship, extended family relationship, social environment, and psychological distress. Pieper and colleagues also used the Quality of Life with a Leg Ulcer Questionnaire to gather data pertaining to fatigue, canceling plans, participating in activities, pain, depression, wound drainage, odor, relaxation, and anger. They concluded that chronic leg ulcers greatly affect appearance, mobility, employment, and family life.

  A qualitative study by Langemo et al¹⁴ found that pressure ulcers had a profound impact on the patients' lives, including physical, social, and financial status. Seven major themes emerged that included life impact and changes. A sub-theme was the social impact of the ulcer, including feelings of isolation and missing family and friends.

  A limited number of studies have addressed family stress and chronic illness. Fisher and Lieberman¹⁵ found that some family qualities served a protective function, but others exacerbated the negative effects of caregiving. The authors suggested that interventions for patients with chronic diseases should focus on the multigenerational family rather than only on the primary caregiver.

  Webb et al¹⁶ used the family stress theory as a framework for understanding the stressors experienced by families of children with disabilities and the resources of support that families use to adapt positively to those stresses. Minnes¹⁷ used concepts drawn from the family stress theory to understand factors influencing parental adjustment to stress associated with handicapped children living at home. The results of this study suggest that the family's crisis-meeting resources (or lack thereof) were significant predictors of various forms of stress.

  A few studies explored the experiences of caregivers. Baharestani¹⁸ studied the experience of wives caring for husbands who had pressure ulcers. Boyle¹⁹ examined the wife's experience of living with a spouse who had chronic obstructive pulmonary disease (COPD). Both of these studies identified themes related to living with the everyday illness, surviving the illness, finding explanations, and fearing the future. Smith and Soliday²⁰ found that chronic kidney disease affected more than just the patient with chronic illness. A questionnaire was mailed to 3,000 patients registered with the National Kidney Foundation. Of the estimated 300 families, 123 returned questionnaires that fit the study criteria. The authors found that chronic disease affected patients' perceived role function in their society and related self-image. The families reported less time spent together and spouses were unable to fulfill gender-specific family roles. An interesting quantitative study by Kiecolt-Glaser et al²¹ of 13 female caregivers of relatives with dementia found that psychological stress adversely affected the immune system and that wound healing in the experimental group took significantly longer than in the control group. Kiecolt-Glaser et al²¹ studied 13 women caring for relatives with dementia and 13 control women matched for age and family income. A punch biopsy was performed on all subjects. A hydrocolloid dressing was applied initially and then reapplied 1 week later. Wound healing was measured by photography and response to hydrogen peroxide. Wound healing took longer in the caregiver group than in the control group (48.7 days versus 39.3 days). Also consistent with the group differences in wound repair was that the caregivers produced less interleukin-1 beta in response to lipopolysaccharide stimulation.

  Most of these studies concluded that more research is needed regarding the impact of chronic health situations on the family. The results of such studies will assist healthcare providers to better plan needed services and improve quality of care.

Discussion

  Wound care literature focuses on the technological advances in wound care, the increase in evidence-based care, and the financial burden to the patient and healthcare provider rather than on caring for the person with the wound in a comprehensive manner. In an attempt to study the wound at a cellular level, the approach has been to separate the wound from the context of the person and environment.²² This approach has left a gap in the evidence related to the impact of the wound on the family.

  Research and information related to chronic wounds and family adaptation is limited. A wealth of literature is available pertaining to the physiological aspects of wound care, and a substantial amount of literature is available pertaining to the impact of the wound on the individual. However, a paucity of literature exists pertaining to the impact of the chronic wound on the family, and no literature related to chronic wounds and the family stress theory was found. Salcido²³ says that most current wound care literature ignores the valuable contribution that lay caregivers make in the care of patients with chronic wounds.

  Another significant issue related to the limited literature available is study design. Existing studies are predominantly qualitative; only one is quantitative. This may be because the foci of the problems were not clearly identified and the qualitative approach makes such allowances. Another limitation in the literature is the sample sizes used in the studies identified. Larger samples are needed to more accurately define the challenges and issues.

  In addition, because of the lack of research, it is not known if different types of wounds have different effects on the family. For instance, does the degree of tissue loss in the wound have an effect on the family, or is the size or type of the wound or the amount of odor or drainage more important? Does the duration of the wound add stress on the family? These unanswered questions demonstrate the need for further research and investigation.

Implications for Nursing or the Healthcare Provider

The prevalence of chronic ulcerated skin lesions is estimated to be 120 per 100,000 people 45 to 64 years of age, 150 per 100,000 people 65 to 74 years of age, and more than 800 per 100,000 people 75 years old or greater.²⁴ These numbers fail to capture unreported ulcers - ie, surgical wound dehiscence, IV extravasation, or chemical denudement around percutaneous gastrostomy tube sites. The elderly population has the largest number of wounds yet may experience more problems in adapting to the impact of a chronic wound due to limited resources.

  The implications for nursing and healthcare providers are both clinical and professional. Core values of nursing include viewing individuals holistically within their environments, consideration of cultural traditions, and respecting patient and family values.²⁵ In the clinical setting, healthcare providers need to be aware of the potential impact of a chronic wound on the patient, the caregiver, and the family. Assessment of the family and its adaptation to the wound needs to be a component of the care plan. Family assessment instruments that allow the provider to evaluate the family and its ability to adapt to stress may be helpful in predicting the ability of the family to adapt to stressful events. The provider needs to remember to treat the patient in the context of his/her environment and not focus only on the outcome of care (wound healing). The family needs to be considered when developing the treatment plan. The provider needs to consider the cost of wound supplies, the frequency of wound care, management of drainage and odor, and the ability of the patient and/or family to carry out wound care procedures. Teaching methods need to be adapted to the family's educational level. Finally, the family needs to be kept informed of the wound healing process, options for care, and progress.

  Another implication for nursing and healthcare providers is the need for further research regarding chronic wounds and their impact on the family. As the population ages, the number of patients with chronic wounds also will increase. The potential for family stress due to these chronic wounds grows. Further research is needed that will help identify family coping mechanisms along with additional resources or avenues that providers can pursue when developing a treatment plan.

 Ms. Pittman is a Wound, Ostomy, Continence nurse at Memorial Hospital in Seymour, Ind. She will be completing the Adult Nurse Practitioner Program at Indiana University School of Nursing in May, 2003. Please address correspondence to: Joyce Pittman, RN, CWOCN, 2220 West Lakeview Drive, North Vernon, IN 47265; email JyPit@aol.com.

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