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|Research: Living a Normal Life with HomePN|
Living a Normal Life with HomePNMarion F. Winkler, PhD, RD, LDN, CNSC
Home parenteral nutrition (HPN) provides life-sustaining intravenous nutrition for individuals who have impaired gastrointestinal (GI) function. One goal of HPN is to improve quality of life (QOL) for these individuals. Yet poor QOL has been consistently reported in studies comparing HPN-dependent individuals to healthy adults. It is not clear whether this poor QOL is related to the underlying medical condition, HPN technology, or the individual’s beliefs, values or life experiences. Among HPN consumers, factors that may influence QOL include underlying health diagnoses, depression, marital status, access to support systems, and financial security.
The aim of this qualitative study was to define QOL and describe how HPN influences a person’s QOL. Knowing how HPN consumers view QOL may enhance care and may also provide groundwork for the development of a patient-reported outcomes questionnaire, which could further enhance care.
Research MethodologyThe study was conducted using audiotaped telephone interviews in which participants told stories about living with HPN and answered questions about QOL and the meaning of food. The interview transcripts were analyzed by grouping words, phrases, and paragraphs together to identify similar experiences and themes. The study received approval from the Institutional Review Boards of Rhode Island Hospital and the University of Medicine and Dentistry of New Jersey.
Study ParticipantsParticipants were recruited from announcements sent to HPN programs and the Oley Foundation Web site. Twenty-three of the twenty-four HPN-dependent adults who were interviewed for this study had a diagnosis of short bowel syndrome due to resection for Crohn’s disease, mesenteric ischemia, or radiation enteritis. The other participant was diagnosed with dysmotility. Half of the participants had an ostomy.
Eighteen of the participants were female and sixteen were married. Half of the participants were disabled or on a medical leave of absence; five were retired; four were working part time; and three were working full time. The length of time the study participants had been receiving HPN ranged from four months to twenty-six years (with an average of eight years). They infused between two and seven times per week (average six), from nine to twenty-four hours (average twelve). Only thirteen of the participants were involved or familiar with the Oley Foundation.
Defining QOLStudy participants defined QOL as how much one enjoys life; being happy, satisfied, or content with life; and “being able to do what you want to do when you want to do it.” They all noted activities they wanted to be able to do, including: working or doing household chores; attending community or church events; socializing with friends and family; various sports and leisure activities; traveling; and eating or dining out. Their ability to participate in these activities was affected by their health, stamina, and GI symptoms.
The HPN consumers interviewed felt having diarrhea or worrying about an ostomy leak had greater impact on their lifestyle than infusing HPN. The unpredictability of diarrhea interrupted life; they were unable to plan around it. A few of the participants with ostomies said the ostomy gave them more freedom because it was no longer necessary to be close to a bathroom; others said the ostomy caused disrupted sleep and made swimming, traveling, and choosing clothing difficult. One participant described good QOL as “one where you can go out freely, you don’t have to worry about infection, you don’t have to carry one thousand things with you, and you don’t have to run to the bathroom.”
Measuring QOLWhile published reports have associated HPN with poor QOL, twenty-one of the study participants viewed their own QOL as “good,” “pretty good,” “very good,” or “wonderful.” The remaining three reported unsatisfactory QOL, but one attributed this to frequent infections and the other two attributed it to factors unrelated to HPN.
When describing their QOL, participants discussed how important it was to be pain free and to have health and enough energy to be mobile and “to get up and go.” Fatigue due to health issues, immobilizing diarrhea, aging, and lack of sleep interfered with enjoyment of life. Some participants noted that “some days things are more important to you than other days,” and good QOL “depends on how you are feeling.” Faith, having a supportive spouse, the ability to work or be productive, and financial security also influenced their QOL.
Similar to findings in other published research, participants who had short bowel syndrome because of Crohn’s disease or radiation enteritis described poor QOL before starting HPN. These participants noted substantial improvement following initiation of HPN and attributed the change to gains in energy, strength, stamina, and weight. One female participant who had been on HPN for six and a half years explained: “Initially it wasn’t good and at times poor, but I’ve been out of the hospital for three years, and family members say I look healthier. And when you look at it that way, and I look in the mirror, I can see the difference. Overall I would say my quality of life now, it’s very good.” Another female participant with Crohn’s disease said, “Before HPN I would say my quality of life was poor. I was having massive diarrhea. I was spending literally the entire day on the toilet. The wonderful part of HPN was, I went from feeling really awful, from being malnourished for many years, to having strength and stamina.”
Previously healthy participants who developed short bowel syndrome acutely because of mesenteric ischemia, however, described a better QOL before the need for HPN. One male participant who had been receiving HPN for less than a year following massive resection for ischemia recalled, “Up until I got sick, I was active and out playing golf and going out to eat more often”; and one female participant who had emergency surgery for gangrenous bowel noted: “Before, I could eat everything, everything without worrying about diarrhea. I mean it was a normal good life. I used to work sixteen to seventeen hours easily. I did everything for my children, for my husband, I did everything for everybody.”
Benefits versus BurdenHomePN had become an integral part of each study participant’s life. Individuals equated “doing HPN” with “brushing teeth” and “washing up before going to bed.” They associated HPN with being “hooked up,” or “tied down,” yet noted they were “happy to be alive.” Although they described being “tethered” and having to “drag around the backpack or pole,” they, as one participant phrased it, “just put up with it.”
Some individuals were flexible in planning their HPN infusion schedule around the activities in which they wanted to participate. They would change the infusion hours or skip an infusion to accommodate a social situation. Other participants were much more structured with the infusion schedule and opted to miss activities. Overall, the benefits of HPN were seen to outweigh the burden of the HPN technology.
A Nutritional Safety NetThe study participants saw HPN as unquestionably a life-sustaining therapy. They recognized that without the ability to receive nutrition intravenously, they might not survive. They felt secure knowing their nutritional needs were being met by HPN and that they were able to gain weight and strength even without the ability to digest and absorb food. This view affected their attitudes toward food, which was another of several themes that emerged in the interviews.
All of the study participants ate food. They felt less pressure to eat, however, because they perceived HPN as a nutritional safety net. They saw eating as a QOL issue and, in the words of one participant, defined good QOL as “being able to eat what I want, when I want.”
Eating for Survival, Health, and PleasureParticipants who had short bowel syndrome because of resections due to Crohn’s disease or radiation enteritis reflected on their struggle to survive and maintain weight. Prior to receiving HPN, they had to constantly focus on eating and drinking. For example, one participant noted: “I had to spend so much time always just thinking, trying to keep my nutrition up.” This struggle led to feelings of desperation, anxiety, and futility. These participants described a poorer QOL before starting HPN because they were unable to work or participate in social activities due to their diarrhea, weight loss, and malnutrition.
With HPN as a nutritional safety net, participants changed their eating behaviors and focused instead on the health and immune benefits of food. They tried to eat small amounts of food to stimulate the bowel and promote intestinal adaptation. The possibility for intestinal adaptation and the hope of decreasing HPN dependency was very important to them.
Participants also discussed the importance of eating for pleasure. They described being content and feeling satiated by small amounts of food and they discussed food as a gathering point for families, especially around holidays. Enjoyment and satisfaction were achieved through socializing, shared meals, and family get-togethers. They associated this pleasure with belonging, whether or not they were eating. The degree to which the participants enjoyed what they ate varied. Those who had less diarrhea or GI distress ate more frequently than those who had diarrhea or pain, yet only a few said they did not enjoy food and that it was no longer appealing or fun.
Achieving a Sense of NormalcyMany participants discussed the importance of having a positive attitude and adjusting life goals and priorities. They appeared to accept the changes associated with their illness, surgery, and HPN. Even though participants were resentful of the medical circumstances that caused them to need HPN and admitted they “would love not to have it,” they understood how necessary it was to their survival.
Although participants may have been left with no choice but to accept HPN, they learned to endure the consequences associated with serious illness, surgery, or technology dependence. The strong view of HPN as a life-sustaining therapy and a nutritional safety net contributed to acceptance of a new way of life. Ultimately, they realized attaining a sense of normalcy was a matter of personal responsibility and of taking charge. “HPN actually gave me more control over something that I really felt I had no control over—to be able to take care of myself and to make decisions about my care.”
Participants sought knowledge from home care professionals, the Oley Foundation, local support groups, and other people who received HPN. One said, “Until I found the support group I had nobody to ask, no references; the doctors really didn’t even know what to tell me.” The realization that other people lived under similar circumstances helped participants perceive their own situation as normal. “I felt like I was the only one in the world until I found somebody else like me.” Participants shared their own experiences living with chronic disease or HPN through volunteer service, visits to new HPN patients, or involvement with the Oley Foundation. Doing so helped them to establish a sense of normalcy and enhanced self-identity.
When asked what HPN means to them, one participant answered: “A normal life. It’s just that simple.” Another said, “I try to live as normal a life as possible.” These individuals had redefined “normal” in the face of their current life circumstances and health status. “It’s changed our whole lives,” one said, “our whole outlook, our whole being, you know the two of us, we’re together at this.” Another stated, “HPN means life, but yet it’s not life as you knew it before and it’s a whole different world.”
Good QOL PossibleThe findings from this study demonstrate that it is possible to have good QOL while receiving HPN. The study participants wanted others to hear their stories and life experiences, and hoped to provide the message that living with HPN was “really not a big deal.” They also hoped their stories would enlighten health care professionals and encourage them to talk with their patients about some of the “non-medical things in life.”
“I appreciate it when people recognize me for the person I am and not just the disease process or the therapy,” said one woman, “‘cause if you get to know somebody and you know what they want to achieve in their life and who they are as a person, then you’re going to make an extra special effort to make sure they’re healthy enough to be able to do those things.” Consumers can initiate discussions with their health care providers about how they define QOL and their goals, priorities, and expectations about HPN. Such discussions may help identify behaviors and copings strategies that promote adaptation and a sense of normalcy.
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Oley Regional Conference
5/22/2017 » 5/25/2017
Oley exhibit at National Home Infusion Association Conference, Orlando, FL