Challenges in Caring for Morbidly Obese Patients
Marie E. Pokorny MSN, PhD, RN
Elaine Scott RN, PhD
Mary Ann Rose EdD, RN
Gloria Baker MSN, RN
Melvin Swanson PhD
Wanda Waters ADN, RN
Frank Watkins BSN, RN
Dan Drake MSN, RN, CBN
Home Healthcare Nurse
Volume 27 Number 1
Pages 43 - 52
This study aimed to determine how morbidly obese patients and their families manage activities of daily living (ADLs) at home. A survey design was used for this descriptive study. Home healthcare professionals identified both challenges and innovations in managing the ADLs of the morbidly obese in the home.
As Frances' mobility decreased, her weight increased, and the joint pain associated with standing became increasingly severe. Over time, she experienced difficulty getting in and out of bed and needed modifications to her bathroom that allowed her to sit while showering and use a handheld shower head for bathing. After she complained of severe leg pain that kept her awake, her daughter scheduled an appointment with her primary care physician.
The doctor told Frances that she needed to lose weight. Her diagnosis was lymphedema of the legs caused by obesity. She was given a handout for leg exercises and dietary recommendations as well as medication to aid her in sleeping. The doctor told the daughter it was imperative that her mother restrict her caloric intake, walk around the house several times a day, and do the chair exercise program so that her circulation would improve. Frances also was instructed to elevate her legs when sitting and to wear elastic stockings that were to be purchased.
Upon returning home, Frances was noncompliant with her diet, demanding that her daughter bring her food that she wanted and calling friends to come with cake and soft drinks when the daughter refused to get them for her. She would not wear the stockings to help with her circulation and returned to her daily habit of getting up and sitting in her recliner all day to watch television.
Early one morning 2 weeks later, Frances called her daughter to report that she could not get out of bed and that her legs were "leaking fluid." She screamed into the phone that her knee pain was excruciating. The daughter notified the physician, and the doctor's office worked her in for a visit that afternoon.
Frances could not ambulate and needed 2 people to assist in transferring her to the wheelchair. A van with a lift was used to transport her to the physician's office. After examination by the physician, a diagnosis of cellulitis was made, and Frances was admitted to the hospital. At the admission examination, it was determined that Frances weighed 327 pounds and had a body mass index (BMI) of 36, placing her in the morbidly obese category of patients.
Frances was treated with intravenous antibiotics, placed on a low-salt low-calorie diet, and given physical therapy. After a 4-day hospital stay, the discharge planner met with Frances and her daughter to explain that Frances could choose either to enter a rehab unit for therapy or to go home with physical therapy and nursing to support her in regaining mobility and monitoring her cellulitis. She chose to go home, and a reference was made to a Home Health Agency (HHA).
A plan was made for the home health registered nurse and a home health aide to visit Frances daily for 5 days, then every other day for 1 week, 3 times the 3rd week, and finally twice a week for 2 weeks. Physical therapy was ordered 3 times per week for 4 weeks, then decreased to 2 times per week for 5 weeks. Additionally, occupational therapy was ordered 2 times per week for 6 weeks to teach energy conservation techniques and to increase independence with ADLs. The occupational therapist would also work with the daughter on methods to provide care for her mother without injuring herself. Frances was to return to the doctor's office in 2 weeks.
Imagine that you are the home health clinician in charge of planning the care for Frances. What would you do to help prepare your home healthcare team for going on your first visit? The following study will provide some answers.
It is now evident that morbid obesity has become a major problem in our society. The Centers for Disease Control and Prevention ("Obesity Among Adults," 2007) report the rate of obesity at 34% of U.S. adults 20 years of age or older according to a new study released in November, 2007.
North Carolina has the 16th highest level of adult obesity in the nation, at 27%, and the 5th highest childhood obesity rate for 10- to 17-year-olds, at 19%. The state spent an estimated $254 per person in 2003 on medical costs related to obesity, which was the 28th highest amount in the nation ("F as in Fat," 2008; Trust for America's Health, 2007).
As Americans get heavier, their health suffers. Overweight and obesity increase the risk for coronary heart disease, type 2 diabetes, and certain cancers. According to some estimates, at least 400,000 deaths each year may be attributed to obesity (Mokdad, Marks, Stroup, & Gerberding, 2004).
Our research group, the Bariatric Nursing Consortium, has conducted several studies dealing with nursing care for the morbidly obese. We have focused on the needs of the morbidly obese patient including the nurses' perceptions of the challenges caring for the morbidly obese in the hospital setting as well as the personnel and time required to care for obese and nonobese patients in an acute care setting (Drake, Dutton, Engelke, McAuliffe, & Rose, 2005; Rose et al., 2006; Rose et al., 2007).
However, morbidly obese patients are found not only in the hospital setting but also in almost every area of the healthcare system. Nurses practicing in a variety of settings encounter these patients and must be attuned to their special needs and characteristics.
As we have grappled with these problems of providing care for patients in the acute care setting, we have realized that we know little or nothing about how the very obese patient and family manage at home. The very large patient may encounter difficulty ambulating and taking care of personal needs such as toileting, accomplishing skin care, and bathing. A better understanding of how these patients manage and what burdens are placed on the family assisting in care would help nurses and other healthcare professionals improve their care.
This lack of information prompted the development of this study. The aim of the study was to determine how morbidly obese patients and families manage activities of daily living (ADLs) at home.
There is scant research literature describing how to care for the obese patient in the home setting. Gallagher (1998) surveyed 25 registered nurses employed by one of the many referral home care agencies in the greater Los Angeles, California area. A descriptive survey was used to identify challenges encountered by the home care provider when caring for a morbidly obese client in the home care setting and to provide recommendations for those involved in the transition of the patient from the acute care setting to the home.
The challenges expressed by the nurses in the home care setting include equipment, reimbursement, access to resources, client motivation, and family/significant other support. In a case study, Lombardo and Roof (2005) used modeling and role modeling theory to provide care for a homebound morbidly obese client. Although little is known about the care of obese patients in the home, when hospitalized, these patients require almost twice as much staff time as required by the nonobese patient for carrying out their ADLs (Rose et al., 2007).
For this descriptive study, a survey design was used to identify knowledge, experiences, and concerns of home care clinicians who care for morbidly obese patients. For the purpose of this study, morbid obesity was defined as weight exceeding 300 pounds. Data for this study were collected from a questionnaire designed by the Bariatric Nursing Consortium based on standard definitions of ADLs. Both multiple-choice and open-ended questions addressed the following areas of care: skin care, toileting, dressing, oral hygiene, feeding/food, getting out of bed, safety of the personnel and patient, and psychosocial and family issues. See Table 1 for a sample survey item related to bathing.
Table 1. Example of Question From the Survey Related to Bathing
The survey tool was piloted with 5 home health nurses identified by a member of the consortium who had worked in home health. Modifications were made based on their recommendations, and the tool was finalized. The combined institutional review boards (IRBs) of the university and the hospital approved the study.
The survey was placed on the Internet with an Internet link accessed through the College of Nursing. It was designed to be completed in about 20 minutes. By February and March of 2007, 38 online surveys had been completed, and an additional 37 pencil-and-paper surveys also were completed in May 2007.
The senior vice president of the Association for Home Healthcare and Hospice of North Carolina, Inc. (AHHC) agreed to send out an Internet message weekly to the certified HHAs regarding this study telling them how to access the study via the Internet. The online participants were home healthcare and hospice registered nurses. Their return of the completed instrument constituted their consent to participate in the study. To encourage participation, the AHHC provided a free 35th Association Annual Convention registration awarded from a drawing of the nurses who completed the online survey.
After analyzing the online data, we realized that there also are professionals from other disciplines, such as physical therapists, occupational therapists, and home health aides, who could provide very useful data. We wanted to enlarge the target population to include these individuals as well. We revised the IRB and put 1 additional question on the survey asking the respondents to identify their disciplines. The remainder of the study remained unchanged.
The surveys were distributed at the 35th Annual Convention of the AHHC to multidisciplinary healthcare professionals who attended. The surveys were completed and returned at a designated table. They were returned to the author by a faculty colleague who attended the convention. A gift basket was offered as an incentive to participate in the study. An additional 37 paper and pencil surveys were completed through this process.
A total of 75 clinicians participated in the survey including 71 registered nurses. The remaining 4 participants included a home nurse aide, a social worker, a physical therapist, and 1 person with a bachelor's degree who did not mention his or her role. In terms of credentials, 49% of the participants had an associate degree, 7% had a diploma, 28% had a baccalaureate, and 15% had master's. Most of the participants (93%) were white. The participants reported employment in a home care setting for a mean of 9.3 years (range, 1-22 years). Their mean age was 44.2 (range, 19-61 years). They had cared for an average of 9 morbidly obese patients over the past 6 months. Table 2 presents the participants' demographic data.
TABLE 2 Demographic Data of Participants: North Carolina Home Healthcare and Hospice Professionals
Eight areas of care were described: bathing, skin care, toileting, dressing, oral hygiene, feeding/food, getting out of bed, and psychosocial and family issues. Additionally, safety issues of nursing personnel and patients were addressed. Some of the challenges and innovations in each of these areas are discussed.
The nurses reported a high level of dependency for their morbidly obese patients. A majority of their patients could not perform most of the noted activities independently and required assistance. Table 3 depicts the nurses' perceived percentage of patients who required assistance for selected activities.
TABLE 3: Nurses’ Perceptions of the Percentage of Patients Requiring Assistance
The respondents noted particular difficulties with building structures in their homes or the requirement for special equipment. Two activities related to household structures, toileting and bathing, were noted as particularly problematic. In some cases, nurses reported that the home bathroom was too small to accommodate the morbidly obese patient. Nurses also noted that patients and caregivers used assistive devices including handheld shower heads, bathing wands, and long-handled sponges for the actual bath. Hoyer lifts were used for transferring and arm rails for support. Doorways were sometimes not large enough to accommodate the patient and a lift or other required equipment. To handle bathing, 1 nurse reported that the patient had a specially designed bathroom with an open floor plan. Because of bathing-related problems, nurses reported that some patients took only sponge baths and that 1% of the patients did not bathe at all.
Toileting also presented challenges. Nurses reported that some patients had difficulty transferring to and from the toilet because it was too low and that patients sometimes placed a bedside commode over the toilet. A bedside commode alone was used for toileting in 54% of cases. Nurses reported that 46% of patients used diapers or chux. One nurse reported a patient spreading a garbage bag over a bedpan to solve these problems.
Nurses reported that getting out of bed and walking is problematic for many patients, who are sharply limited in this regard. Table 4 portrays the percentage of patients who accomplish varying degrees of ambulation. Patients often required Hoyer lifts for assistance in getting out of bed.
TABLE 4: Nurses’ Perception of the Level of Ambulation with Patient Percentages
Nurses reported that caregivers and morbidly obese patients experience a high degree of fatigue when performing or assisting with ADLs including bathing, dressing, tending to skin care needs, and helping to get meals. Nurses reported that tending to hygiene needs was tiring for patients, particularly the act of dressing. This was compounded by problems encountered with clothes not large enough and difficulty putting on pants, shoes, and socks. The inability of patients to bend or raise their arms also was cited by some as compromising dressing skill. Some patients wore slip-on shoes, which were easier to put on, and favored clothes that opened up the back.
Nurses were asked what percentage of morbidly obese patients dressed. A majority (64%) reported that the patients dress "sometimes," and the response of another 13% was "most of the time." As reported, 24% did not dress. Caregiver exhaustion also was a problem in bathing the patient. The clinicians noted the challenges of reaching the skin folds, managing a 150-pound abdominal apron of flesh (panniculus), difficulty turning and properly cleaning all areas, and difficulties lifting the patient's legs.
Additionally, the clinicians described skin care as taking a great deal of time and attention. A special skin care regimen was carried out by 82% of the patients. Specifically, 55% used powder in skinfolds, 14% used deodorant in skinfolds, and 51% used padding in skinfolds. No special skin care regimen was reported by 18% of the patients. Skin challenges were faced by 72% of patients including yeast infection in the skinfolds; a wound in a skinfold that had not healed for 8 months; lack of good skin care, particularly during the summer months; and a lack of adequate cooling.
Innovations included "bead" pillows or stuffed animals for small supports, which gave some alternating pressure. Some reported that the skin was kept clean and dry by using cotton within the skinfold area. The hair dryer, set on cool, was used to dry the patient's skin completely after a bath. Powder and lotions were applied to other regions such as the back. Mirrors helped for inspection. Antifungal cream was used in skinfolds, and Gold Bond powder was mentioned by 1 person as the best powder.
As reported, most morbidly obese patients do not prepare their own food. The clinicians reported that 66% of the patients need assistance in shopping or preparing their food and that only 1% do their own shopping, whereas 31% have food brought in to them. Eating is accomplished independently by 75% of these patients. Some use bibs and have coolers packed daily at the bedside.
Safety is a serious concern for morbidly obese patients and their caregivers. Participants described 7 specific episodes implying safety issues encountered by home health personnel or family members, including 3 who described back injuries, 1 who pulled a muscle related to equipment failure when lifting the patient, 1 who reported caregiver fatigue, and 2 who sustained injuries not identified. There were 6 episodes of patient safety compromised by falls, and 1 nurse reported that a patient sustained a back injury.
To maintain safety, the caregivers perform a safety assessment at patient admission, request occupational therapy (OT) consults, use maximum safety devices such as a Hoyer lift, and use "lift partners."
Psychosocial and family issues are a predominant theme among morbidly obese HHA patients. As perceived by 70% of the participants, morbidly obese patients are more demanding in interpersonal relationships than nonobese patients. Furthermore, 71% found that morbidly obese patients and their families experience particular psychosocial issues resulting from the obesity. For example 1 participant wrote, "Isolation, often normal people fail to see the morbidly obese as a person who has hopes/dreams, personality-normal people many times believe morbidly obese persons could stop eating if they really wanted to-they do not see this as a disease."
Others described these patients as depressed because they are not able to leave home, or their mobility in the home is limited. An example of depression was poignantly summarized by another participant: "Depression. Shame. Embarrassment. Unable to care for children. Safety of children when in care of obese parent. Sexual frustration. Social isolation making Internet dependence their only means of communicating." Interestingly and sadly, there were no suggestions for innovations related to psychosocial and family issues.
Discussion of the Findings
This study found that the care of morbidly obese patients in the home care setting presents unique challenges as well as unique innovations for managing their ADLs at home. The issues of bathing, skin care, toileting, dressing, walking, getting out of bed, safety, and psychological distress parallel those found in other studies of caring for the morbidly obese patient in the home and in acute care.
This study found some of the same challenges identified by home health nurses in Gallagher's (1998) study 10 years ago, specifically the limited availability of specialty equipment and the challenges of dealing with the psychological impact of morbid obesity. Many care providers were challenged by inability to lift, turn, or transfer the obese client. Clinicians identified patient psychosocial needs but seemed to be at a loss about how to address them.
The current study supports the findings of Drake et al. (2005), who interviewed focus groups of nurses. These groups reported concerns about staffing, safety, and the availability of equipment to support care of the morbidly obese in the hospital setting. Safety concerns also had been previously reported (Drake et al., 2005; Gallagher, 1998; Rose et al., 2006). Personnel continue to be concerned about their own personal safety as well as the safety of their patients. They fear that their safety may be compromised due to the lack of appropriately sized and available equipment.
Additionally, this study reiterates the research of Rose et al. (2006), who found high demands on the staff in assisting the morbidly obese patient with walking. The morbidly obese patient in the acute care setting often was too ill to get out of the bed, and this also is the case in the home setting.
One limitation of this study is that it did not identify the primary reason why the patient was referred to home health. The survey did not request the patient's primary referring diagnosis or comorbidities. This prevented evaluation of the relationship between morbid obesity and the need for ADL or home care services. Neither did the study address financial issues or the reimbursement sources of these patients and the role this might play in limiting the availability of needed supplies and resources for effective management of ADLs in the home. Further studies could address these areas and evaluate the relationship of these factors to the management of ADLs in home health.
This study has several implications for practice. Morbidly obese patients, both in acute care and in home health, have a complex array of physical and psychological stressors. Whereas many of these manifest as advanced disease entities, some manifest as the most basic of health status deficiencies including the inability to bathe, dress, walk, and eliminate waste from the body independently. Developing strategies and acquiring support devices and services to allow these patients and their families to function as autonomously as possible are critical to effective home health intervention.
To that end, acute care facilities need to ensure that adequate environmental factors are present before discharge of the morbidly obese patient to the home. These factors include adaptive devices for toileting, transfer, and ambulation as well as family or agency support services to facilitate mobility, skin care, and hygiene. Acute care and home health clinicians need to collaborate in procuring needed devices and services that will advance safety and limit injury to family and caregivers providing care to the morbidly obese patient regardless of the primary diagnosis that prompts a home care referral. Additionally, more research is needed to explore and share innovations that families and home healthcare providers have designed to address the particular challenges of providing ADL support to these patients.
The psychosocial factors that lead to morbid obesity as well as the codependencies that sustain it, such as packing coolers at the bedside, need to be explored. Research on nutritional interventions that are effective and culturally relevant may also advance improvement in weight management and reduction. This study also recognizes the value of the Internet as a social support system for this population of patients and suggests the possibility of online support groups for nutritional as well as psychosocial interventions and research.
Some home health personnel noted care teams as a means for managing ADL support. Yet, no standard exists for assigning multiple care partners based on the weight of a patient, and no additional payment is made when patients require more than 1 home health aide to provide ADLs. Implications for staffing and the cost of caring for these patients should be explored to confirm the need for assigning additional personnel to these cases and for increased reimbursement to HHAs that provide the care.
Implications for Home Healthcare Clinicians
In most situations such as the one experienced by Frances and her daughter, hospitalization and a return to the home can lead to significant changes in the ability to provide ADL care. This research provided the following lessons that would be very important for the nurse performing the initial assessment of Frances:
1. The availability and willingness of the daughter and other family members to provide increased support to Frances in the morning and evening needs investigating because she initially was no longer able to transfer independently from the bed to the chair and back to the bed. Also, assessment of how safely the designated family members assist in this process would be important. Are they trained in body mechanics and proper use of the equipment available to them? Do they need special equipment such as a Hoyer lift? Does Frances need a bariatric hospital bed rather than a standard bed so the head can be raised? Will she need a larger bed, wheelchair, or the like than normal? Does the daughter fear for her own safety when assisting her mother?
2. The plan for dietary modifications that would support weight loss including Frances' emotional readiness to address these issues needs evaluation. Because walking to the kitchen with the walker and standing for long periods are now more difficult, how will Frances prepare meals? Will frozen dinners be used, or will Meals on Wheels be ordered? What accommodations for sodium and calorie restrictions can be made within this dietary plan?
3. At her discharge from the hospital, it also was noted that Frances found it more difficult to pull herself up from the chair using the walker. Walking to the kitchen or to the bathroom with the walker exhausted her. It would be essential to evaluate the need for a bedside commode and if a special size needs to be ordered. Can Frances manage her hygiene after emptying her bowel or bladder? Physical therapy or occupational therapy would evaluate a safe distance for placement of the bedside commode as well as the kind of commode or other device needed, perhaps increasing the distance as Frances gains improvement in mobility. Does Frances need to be taught energy conservation techniques to support her while convalescing?
4. Assessment of Frances' motivation to participate in exercise and activity instead of returning to sedentary television watching also would be important. The development of a chart that allows her to map her own plan for recovery and see a sense of progress might promote her participation in advancing her ability to support her ADLs independently again. Review of efforts toward increasing mobility should be done at every visit.
5. Bathing and grooming abilities need to be reexamined, and the equipment in the home to support this needs reviewing. A shower seat might need to be added, and family might need to be present during the bath to assist the patient. Special attention to cleaning, examining, and drying the skin needs reiteration because Frances has susceptibility to cellulitis. Staff need to document changes in skin integrity, cellulitis, and lymphedema at every visit.
6. Attention to elevation of the legs and use of circulatory support stockings or devices is imperative with lymphedema. Education of the family and Frances on the signs of infection would be central to successful recovery.
The newest projections for the number of obese people in the United States present challenges for HHAs. According to a July 2008 CDC survey, the South tips the scales as the nation's fattest region. Nearly 1 in 3 adults was obese in 3 states: Alabama, Mississippi, and Tennessee. As believed by CDC officials, the telephone survey of 350,000 adults offers conservative estimates of obesity rates because experts report that men commonly overstate their weight, whereas women lowball their weight. No state met the Healthy People 2010 objective of a 15% obesity rate, and 30 states were 10 or more percentage points away from the objective (CDC, 2007b; U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, n.d.).
With the continued aging and fattening of Americans, management of the morbidly obese patient in home health will become an increasing challenge. To ensure the safety of patients, families, and staff, HHAs must evaluate innovative care strategies, staffing, and transfer devices to prevent falls and back injuries. Currently, the weight and BMI of a patient is not a consideration in the reimbursement of care by primary home health providers although it is an essential challenge in the delivery of safe and effective care.
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