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Support Groups

Lisa Crosby Metzger, Joan Bishop, and Lyn Howard, MB, FRCP

“When we first discussed what topics we should include in our textbook on intestinal failure (Clinical Management of Intestinal Failure), we thought it would be a great idea to include a chapter on support groups such as Oley,” writes Kathleen Gura, PharmD, BCNSP, FASHP.”

“Many health care practitioners are unaware of the benefits of support groups or even the existence of Oley,” she continues.

The Oley Foundation was invited to write the chapter and has obtained permission to reprint it. The first part of the chapter follows. We’d appreciate your feedback, and hope you will share it with your health care provider.

Reprinted with permission from Clinical Management of Intestinal Failure, edited by Kathleen Gura, PharmD, BCNSP, FASHP, Christopher P. Duggan, MD, MPH, and Tom Jaksic, MD, PhD (Taylor & Francis Group, 2012).


Part One

Oley volunteers learn about leading support groups.

Individuals coalesce into a support group because of life-altering circumstances, such as chronic illness, dependency, or grief. For those who come to the Oley Foundation, the circumstance is severe bowel [or digestive tract] dysfunction that has led to the need for home parenteral and/or enteral nutrition (HPEN). For many of them, HPEN has been life saving. However, they are aware that potentially life-threatening complications come hand in hand with HPEN’s life-saving properties, and that both HPEN and the illnesses that lead to HPEN can come with psychosocial side effects.1,2,3,4,5 The HPEN consumer or caregiver has his or her hands full with care issues, and then often faces grieving, depression, and feelings of isolation and bewilderment as well.6,7,8,9 Financial stress, too, often accompanies chronic illness and expensive therapies such as HPEN.10, 11

...The Oley Foundation offers HPEN consumers learning opportunities to make day-to-day living safer, more manageable, and more satisfying; and networking and social opportunities to combat the isolation and provide consumers with hope. In addition, the Oley Foundation gives HPEN consumers an opportunity to be heard, both by other consumers and by a larger audience. In this way Oley can help bridge the gap between the consumer’s medical and personal worlds.

The Oley Foundation, and other support groups, can help HPEN consumers live life to the fullest, as independently as possible—and complement the goals of the medical professionals on whom the consumers rely. An Oley member who is fed enterally says, “One of the first things you learn when you have to live with being tube fed or living with other complications dealing with your health is that the more you learn about your condition, the better you can cope with it.” Further, the more the consumer knows about HPEN, from how to reduce episodes of sepsis to how to incorporate it into their lives, the safer, healthier, and happier he or she will be.

Role of a Support Group

There are thousands of support groups in the United States that focus on health issues, from the large and well-known (e.g., the American Cancer Society), to the smaller, more obscure (e.g., the Organic Acidemia Association). They may be local or national, and moderated by a professional or peer-to-peer based; they may meet weekly, monthly, irregularly, or be organized around the Internet or the telephone; and they may combine any or all of these elements. Different support groups have different goals, and they can be successful on a variety of levels.

Support groups offer people opportunities to talk to others who share a common experience; give and receive emotional support; share problems, concerns, and coping skills; and gather information and learn.12,13 They can also represent their members in the public arena, giving an organized voice to members’ concerns (consider lobbying efforts by the American Lung Association or the public awareness campaigns by the March of Dimes). Support groups generate understanding and compassion by sharing members’ stories (e.g., in 2009 the Jerry Lewis Muscular Dystrophy Association telethon, in its forty-fourth year, spotlighted seven families).14 Such understanding can help reduce any stigma that may be attached to illness or “otherness.” These groups also often fund or otherwise support research on their particular health problem.

Benefit of Participation

The relationship between better patient outcomes and better quality of life (QoL), and support group participation, has been demonstrated by numerous studies in a wide range of chronic health disorders. Cancer support groups are perhaps the most widely studied. Pertinent to our concerns—whether participation in a support group is beneficial to people…on HPEN—are the studies by Dr. Carol Smith and her team at the School of Nursing, University of Kansas Medical Center.

In 2002, Dr. Smith and colleagues published the results of a study focused specifically on the relationship between affiliation with a national support group (the Oley Foundation) and home parenteral nutrition (HPN) patient outcomes.15 The study looked at two groups of HPN patients: group 1 was comprised of 52 patients from large academic center medical programs and group 2 was comprised of 43 patients who were supervised by a physician in private practice. Patients were separated out in this way because many of those in group 1 had access to a nutrition support team through the center that provided their care, and this support might have reduced what these individuals gained from a national organization.

     Oley members learn and share with each other.

Twenty-four of the participants in group 1 were affiliated with the Oley Foundation and 28 matched case controls were not; 21 of the participants in group 2 were affiliated with Oley and 22 matched controls were not. The matched case controls had similar primary diagnoses, duration on HPN, sex, and age distribution. All these factors are known to independently influence clinical outcome. Participants each filled out the 35-question Quality of Life Index (QLI) and a 20-question reactive depression questionnaire. “This study,” Dr. Smith writes, “showed that patients affiliated with a national organization have a better outcome, regardless of HPN program size. Specifically, affiliated patients, compared with nonaffiliated case-matched controls, experienced a significantly higher quality of life, less reactive depression, and a lower incidence of catheter-related sepsis”. 16

Dr. Smith has also reported favorable results in a peer support program initiated at the University of Kansas Medical Center in the late 1990s. In this program, patients who were identified as successfully managing their own HPN underwent training to become preceptors. Their instruction included reinforcement exercises to: (1) develop listening skills; (2) appropriately respond to concerns reported by patients; and (3) avoid providing medical advice (Smith, 11/4/2009, pers. comm.). They were subsequently paired with more recently diagnosed HPN patients. In the results published in 2001, Dr. Smith notes “new patients’ post-preceptor interaction depression scores decreased, whereas confidence to master home HPN increased….Also, each patient and their peer preceptor rated the interactions as helpful”.17,18

Also relevant to our concerns is a study by Dr. Mary Trainor based on the “helper therapy principle.” In this study, 318 members of the United Ostomy Association (UOA) completed a 50-statement scale designed to measure their ostomy acceptance level. Respondents were also asked to provide personal information, including whether they had participated in visitor programs sponsored by local UOA chapters. Fifty-four percent of the participants indicated they had visited other ostomates (“visitors”); the remaining 46% had not visited other ostomates (“nonvisitors”). Dr. Trainor concluded, “visitors had a greater acceptance of their ostomy than nonvisitors.…Results support Riessman’s theory (1965) that persons benefit from helping others” (Trainor, Nurs Res 1982;31[2]: 105).

Oley Foundation History

The Oley Foundation is a nonprofit, independent organization that provides education, emotional support, and clinical outcome information for HPEN consumers, their families, and supporting professionals.

The foundation was initiated in 1983 by Dr. Lyn Howard, then Director of the Clinical Nutrition HPEN program, Albany Medical Center, Albany, New York, and her patient, Clarence Oldenburg (nicknamed “Oley”). Dr. Howard strongly believes that HPEN consumers benefit from talking to one another, but she recognized that at that time very few had such an opportunity. HPEN are complicated therapies. Further, HPN was relatively new in the early 1980s; information about it was difficult to come by and patients were widely dispersed. The Oley Foundation was established to fill this void. It currently [2013] has over [12,500] members across the United States and in Canada, Australia, Europe, and India. Membership is… divided between HPEN consumers or caregivers [63% in 2013] and HPEN professionals [37% in 2013].

Don Young, who has been on HPN since 1975, has been part of Oley since its inception. “I had eight years’ experience [on HPN] prior to Oley,” he says. “I think we were unique in our area in that we had a physician who drew us all in together. We used to have clinic on the same day and we always planned to get together after our appointments, so we had that support group right from day one. When I started there was only one other patient in the Albany program, and he soon died. It took a year until we got to the grand total of four. But we still were a group, and we did see each other, and we talked to each other on the phone. So we had kind of a mini Oley Foundation going before the foundation actually started.”

In 1978, Marshall and Lee Koonin had begun a patient group in Sharon, Massachusetts. When Lee began HPN in 1977, she remembers that it was considered an experimental therapy “that was not even allowed in some hospitals.”19 Lee felt very alone and Marshall was determined to find others who were using HPN, both to bring them together and to let others know the therapy worked and maybe shouldn’t be considered experimental. The Koonins’ Lifeline Foundation grew to about 600 members. They published a newsletter, organized picnics, and started a network of consumers who were willing to talk to other consumers. It was, however, a huge commitment of the Koonins’ time and money, and after reassuring themselves that the Oley Foundation would continue the work they had begun, in 1984 the Koonins were relieved to hand the Lifeline Foundation over to the newly established Oley Foundation.

Making Connections

It is now over 25 years since the Oley Foundation was founded, but it is often still difficult for HPEN consumers to connect with one another or for new HPEN consumers to learn about the Oley Foundation or other HPEN support groups [for a list of other support groups, contact Oley or visit www.oley.org]. Many health care providers and hospital discharge planners do not know about these groups; and those who do may initially have little success introducing them to new consumers, who are so preoccupied with the medical issues surrounding HPEN—such as maintaining sterile technique or avoiding infection—that they cannot think about future needs.

One HPEN consumer says, “You’re just so busy dealing with the day-to-day in the beginning that you don’t even think about the long term or whether you’re going to be secure in the long term.” On the other hand, the mother of a child born with intestinal dysfunction remembers: “When they gave us a diagnosis, I said, ‘I want a way to figure out how we’re going to get her home, and I need to have support. Find me another child someplace in this world with this diagnosis. At the time we were told there wasn’t anybody because it was such a rare disorder.’” She learned of Oley, and did find another child with the same diagnosis, through one of the intensive care nurses, who had read about a child with this diagnosis in an Oley newsletter.

Sometimes patients who receive information about the Oley Foundation while in the hospital read the literature they received much later, when they are able to process that information or when they are looking for answers to specific questions. Consumers or caregivers often turn to the Internet for information on HPEN. The Internet has been a tremendous source of growth for the Oley Foundation, with the Web site (www.oley.org) averaging [9,913 hits per day in 2012]. Sometimes consumers learn about the Oley Foundation through their home care companies; some companies, however, are reluctant to encourage this kind of networking between consumers for fear of losing customers or receiving demands for different/better equipment, supplies, or services that another company offers.

However reluctant people or companies maybe to refer HPEN consumers to Oley, patient and family connections are important. Steve Swensen, who served as president of the Oley board of trustees, likens the Oley Foundation to a mosaic: “I feel as though all the ‘catheter people’ I’ve met through the Oley Foundation—those who have them or care for them, who place them or make them or manage them clinically—all of these individuals have a tile or two to add to a larger mosaic that depicts how to live with central lines. You can’t see much by looking at just your own tiles, you have to step back and see what others have added to get the [big] picture.”1


Part Two

Oley Foundation Programs

Oley Foundation membership and all of the programs the group offers are free to HPEN [home parenteral and enteral] consumers and their families or caregivers. Any program that brings consumers together offers both learning and networking opportunities.

Why is networking so important? One long-term HPEN consumer says, “I’ve talked to an awful lot of people who just got out of the hospital or have been home for a few months, and they’re telling me the same things that I’ve heard for 35 years: they talk about feeling like they’re the only one, of being isolated, that it’s very difficult to explain [about HPEN to other] people. That after five minutes of explaining, it doesn’t seem worth talking any longer…It’s unrealistic to expect [friends, family, andacquaintances to] just grasp it all.”

In the following dialogue, three mothers, all Oley members who manage HPEN-dependent children, echo this sentiment:

L.M.: I think that for the first couple of years, I really wanted somebody outside my immediate family to “get it.” And I really invested in that….People said, “Oh, you’re home? You don’t work? Can you babysit my kids?” After about the sixteenth person said, “Oh, you’re so lucky. Can you babysit?” I realized they aren’t going to get it. And I finally stopped trying to make them understand our life. Because…unless somebody lives with you—and even then it’s iffy—they’re never going to get it. And just because they don’t get it, doesn’t mean they don’t love you…S.K., I remember your approach from our [online] support group helped me as well. You said that when family members were less than understanding during a crisis, it helped when someone close to you said, “Why are you expecting a normal response? They are incapable.”

S.K.: Yes, [this was when my daughter] perforated her bowel....It pushed me off the edge. But once I came to that understanding, I’ve been able to deal with it.

Members share information and friendship at an Oley gathering.

L.M.: I think the second I let that go I was much better emotionally. I do not need anyone to get it because I can go to Oley and they get it, and that’s all I need.

A.W.: But if you don’t have that there’s a need. I can clearly remember thinking I had to tell everybody the whole story and try to make them understand. And I reached the point where I didn’t explain things and then situations cropped up when I realized, Oh yeah, I suppose you really need to know. Because honestly, if you look at…many of the kids, you would have no clue…that they have anything going on.

…[When our son was] about 18 months old…we went to visit [my mother-in-law. We] sent the supplies ahead. One of the first nights we were there she told us, “You could try your best to explain everything to me, but when the supplies came to my house—three boxes full—and I started putting stuff in the refrigerator and started putting stuff away and seeing all the stuff, I had to sit down and cry. Because it just overwhelmed me. What you deal with. You couldn’t have told me.”

 “The general population as a whole,” says one of these mothers, “doesn’t grasp the nature of a chronic condition. They don’t grasp the fact that it is up and down. I certainly experience it at work. Many people just expect your kid to be sick and then you move on and life is fine. And you learn that it’s not like that. I remember early on one of the social workers talking to us in the NICU about chronic conditions. We grieve and re-grieve all the time. You never heal because the condition never goes away. We certainly celebrated the time that [our son] came off HPN [home parenteral, or IV, nutrition]. Being on tube feeds for many people would not be considered a happy life, but for us it was phenomenal. Then to go back [on HPN] and have this bumpy road that we’ve had for the past two years—we long for just tube feeds. Stability is nice. With a chronic condition the best you can hope for is stability.”

Conferences

At the large annual Oley Foundation Consumer/Clinician Conference and the smaller, regional conferences Oley sponsors, consumers and their families, clinicians, and industry representatives meet in large and small groups and one-on-one, in both educational and social settings.

The mother of a fourteen year old tells how her daughter was more comfortable with her HPEN after attending an Oley Foundation conference: “[My daughter’s] perspective started to change a little bit when we started meeting more people….What really did it for her was when we went to [the Oley conference in] Cape Cod….At the time she had gone through a stage where she didn’t want to be seen in public infusing. [She was] body conscious…And I remember, a couple of weeks [after the conference] she says, ‘I’ve decided I’m going to go out in public.’ I said, ‘Well, why is that?’ And she [told me how another teen] was infusing the entire evening that [the two of them] were together… And she didn’t realize it until 45 minutes before the end of the evening. She said, ‘Mom, I keep thinking people see it. I should have noticed it and if I didn’t notice it…’”

Another mother of an HPEN-dependent child tells this story about attending an Oley Foundation conference soon after her son had his first central line placed (at age three) because of short bowel due to infarction from malrotation. Previously she and her husband had been told that their son probably would not survive:

 “For forty days our son had fevers at night. We were brand spanking new, so we didn’t know what to do. We stood over our son, who was vomiting and had a temperature of 105, and I remember my husband saying, ‘We might need to bury our child. He might die.’…

 “Then we were in the hospital and in walked [a health care provider who had] overheard me talking to the social worker. She said, ‘You need to contact Oley.’ I was too overwhelmed, but my mom contacted our local [Oley regional] coordinator, who said, ‘We just happen to have the annual conference right near you in June.’ So for the seventh time in four months our son was discharged. He was then re-admitted with another fever. This time he grew out a bacterial line infection. It was also fungal. They pulled the line. Everything was going on, including the Oley conference. On the first day we gathered family and friends and split up to cover as many presentations [at the conference] as possible. Later we met in ‘headquarters’ upstairs in the hotel room, and everybody starts looking at each other saying, ‘You know what? You can live on HPN. Our doctor and nurses said you die on HPN! They said he’d never eat. He can eat. You know what? We’re not being sterile with the line, and you’re not supposed to have a cap with lipid crud coming out the top.’…We actually met a man who had been on HPN for twenty years!

“Later, I went downstairs and met a woman who said, ‘The two best things I’ve ever done in my life were to go to a different home care company and switch to Dr. [so and so at the other hospital].’ So I went to the home care company booth, which was at the conference…. I told them how our first seven months on HPN had been. One of the representatives said to his colleagues, ‘Come over here and listen to this story.’ I remember thinking, ‘What do you mean listen to me? Nobody listens to me. I’m the crazy mom!’

“After the Oley sessions were over, we took [our son] out of the hospital on a day pass to go ride the rides at Knott’s Berry Farm with other Oley families at the Oley picnic. Our son saw the other [HPEN] kids, all his cousins saw the other kids, and everybody was so excited. We were like, ‘Oh my gosh, I think he’s going to live.’

“And that was when we switched to [another hospital. Our son] had been inpatient seventy days, with probably six line infections, none of which grew out because the nurses kept pulling what should have been the culture and throwing it out as ‘waste.’ That was the last time we were in the hospital, pretty much….Because we were able to attend the Oley conference, we talked to the HPN pharmacist, took notes, switched home care companies, switched doctors. It’s been really stable ever since.…In our first seven months the hospital days were seventy and now there have been seven in-patient days in eight years….His central line is now over seven years old! The Oley conference saved his life, there is no question. And it changed our lives because all the new people we met didn’t look at us like we were crazy.”

About the learning opportunities at an Oley conference, one member writes, “I underwent a subtotal gastrectomy for an abdominal tumor in 1995. Along with numerous other complications, I developed gastroparesis. I struggled for ten years, depending on oral nutrition, motility meds, and little amounts of food. I became very malnourished, which led to severe neurological symptoms. In 2006, I went on HPN via a PICC line. I had amazing results, but developed too many infections and went through five [lines] in one year. I went to my first Oley conference in June 2006. I learned so much, that by that August, I had a jejunostomy button inserted by a physician I learned of at Oley. I am now living the best quality of life [I have had] in fourteen years.”

Oley Ambassador Program and Toll-free Phone Lines

The Oley Foundation also supports networking with an extensive Oley Ambassador program. Over sixty HPEN consumers and/or caregivers have volunteered to represent the foundation in their regions. These volunteers answer phone calls and e-mails, make visits, reach out through the Oley online forum, and generally support other members. Some of them have established support groups that meet regularly in their areas (a list of groups and meeting schedules can be found at www.oley.org). The foundation also maintains three toll-free phone lines that are staffed by different consumers and/or caregivers each month (in addition to a toll-free line to the foundation offices).

The toll-free numbers and Oley Ambassador network are valuable for one-on-one, peer-to-peer support. An Oley Ambassador, talking to another Oley Ambassador, tells how important it is for her to be able to communicate with a peer (both of these Oley Ambassadors have HPEN-dependent children): “There are things that are difficult to say out loud to other people….If I share my fears with you, I know that you know how heavy they make my heart. People just don’t comprehend or grasp that. It’s just nice to know there are people out there who understand what I say.” Further, she adds, “When I say to you, ‘Four liters of output,’ you understand the magnitude. I get these blank looks from people at work. I say, ‘You know the two-liter pop bottles? Two of them. Two of them in three hours!’”

For online networking, the Oley Foundation started a forum in 2008. The community of users grew quickly. One forum user writes, “This forum has been like a lifeline for me—who knew there were others out there like me? I thought I was a medical mystery.” For those who are unable to attend a conference for health or financial reasons, the forum provides a good alternative. The forum can be accessed through the Oley Foundation Web site.

Newsletter

The bimonthly newsletter features a medical article and a personal consumer/caregiver coping or biographical article. It also regularly carries a column with practical tips for HEN consumers; information about major HPEN and/or intestinal management centers; pertinent clinical trials; and any new research or information deemed of interest to HPEN consumers/caregivers/clinicians. For many members, the newsletter is the Oley Foundation’s most conspicuous program.

An article about how to write an effective insurance appeal letter is an example of a typical “coping” article. After reading the article, a member wrote, “I was inspired to start the appeal process with Medicare. Medicare was refusing to pay for my hydration and supplies (I have short bowel). It took four appeals, but I finally received a favorable decision….With the well-needed letter from my doctor…and Medicare rights’ knowledge…I had [my home care company] reimbursed for great work and care: $12,000.”

Information Clearinghouse

Since its inception, the Oley Foundation has collected, compiled, and distributed the most current information available about HPEN and related issues. Foundation staff answer hundreds of information requests each month via e-mail and phone calls. When needed, staff refer members’ questions to medical advisors. The information clearinghouse also includes educational videos and DVDs, which members may borrow. Many of the DVDs cover educational sessions from Oley conferences, allowing more members to benefit from the knowledge imparted by the expert speakers.

The newest educational tool being developed by the foundation isMY HPN, an online program where members can learn more about managing their parenteral nutrition (PN) in the comfort of their home at a time that is convenient to them. Topics range from becoming a more active health care partner, to understanding the nutritional content of a PN solution, to avoiding HPN-related complications.

Research

The Oley Foundation is well known for the North American Home Parenteral and Enteral Nutrition Patient Registry (1987–1994), which is the largest registry of HPEN consumers to date and which allowed researchers to assess outcome on HPEN for different underlying diseases and different age groups. Outcome was measured by mortality on therapy, duration on therapy, complications on therapy, and quality of life (QoL) on therapy. 20

More recently, the Oley Foundation supported the research workshop at the American Society of Parenteral and Enteral Nutrition’s 2009 meeting (Clinical Nutrition Week), titled “Micronutrients in Parenteral Nutrition: Too Little or Too Much?” “In 1979, and again in the mid-1980s, the American Medical Association established guidelines regarding micronutrients in PN. Concerned that these guidelines and the resulting Federal Drug Administration recommendations are outdated, Dr. Lyn Howard and Dr. Alan Buchman located funding for the workshop and invited specialists from around the world to present the most up-to-date research on several micronutrients where new data or controversy exists.”21 The research proceedings have been published as a supplement toGastroenterology.22 “‘We hope,’ said Dr. Howard, ‘this research workshop will lead to an FDA multi-trace element reformulation and the availability of safer commercial products.’”21

Currently [2012], the foundation is coordinating the U.S. portion of a large international HPN QoL study in conjunction with the Home Artificial Nutrition workgroup of the European Society for Parenteral and Enteral Nutrition. Among other things, this research will provide a valuable tool in assessing QoL on HPEN versus QoL after intestinal transplant.

The Oley Foundation…research committee reviews research protocols pertinent to HPEN consumers. If the committee deems it appropriate, these protocols are briefly described in the Oley Foundation newsletter and on the Web site so consumers can find out more about these studies and decide whether they’d like to participate. [Note: see page 7 of this newsletter for two new studies.]

Equipment-Supply Exchange

The Oley Foundation maintains a database of equipment and supplies that consumers no longer need and wish to donate for someone’s use. The foundation facilitates contact between the donor and recipient, who arrange for the delivery of the equipment or supplies. This program is especially popular with HEN consumers, and as a whole, saves participants thousands of dollars each year in out-of-pocket expenses.

Consumers’ Needs Change Over Time

The amount of experience an HPEN consumer has with his or her therapy affects their relationship to the Oley Foundation as a support group and as a source of information, as evidenced in this dialogue between three long-term HPEN consumers:

A.D.: The role of Oley has changed for me through the years. In the beginning it was…just awesome, like kids say, both in terms of learning about real basic stuff, like a new portable pump, and [losing the sense of isolation]. [Dr. H.] has been a wonderful physician and she took care of … me for many years, but you’re sitting with [her] once every three or four months if you’re stable, and she takes a lot of time, but how much information can she convey? There’s just so much that you learn at the Oley conferences that’s amazingly empowering. That was one part of it. And the other part was losing the sense of isolation—talking to other people about how they cope with a lot of the basics, and just knowing that there were other people like you out there. Both of those were amazing, at least for me, in the early stages of my relationship with Oley.

Now my relationship with Oley is…the newsletter, in terms of what I get out of it….Every once in a while I get an in-depth article that’s really relevant to me, [in a format] where I can sit and digest it and really get a lot out of it—probably in some ways even more than I can if I go to a conference where…it’s hard to absorb it all.

L.T.: I think that’s true. [My home care company] people actually got me to Oley in 1989, and…it was really nice to see other people who were on HPN. That was really wonderful. Plus learning all the new information and everything…. [Now], I think [it has become] more a case of wanting to give back and help other people who are in the situation I was in all those years ago. But also, I find that when I come to a conference I always learn at least one thing that has changed, or that’s new, or something I didn’t know yet.

D.Y.: Absolutely. The Oley Foundation started in ’83…We’re a ways down the road now, and…I guess what…I really get—ham that I am—is a great deal of satisfaction when people I don’t know come up to me at the conference, after I’ve spoken, and say you’ve been a real inspiration to me. L., you just said you’re kind of coming to the point where you’re giving back. And that element is very important now….But I find, especially now that [my physician] is retired, that the information I get, the technical information, either comes from Oley, or if I [go] to a Crohn’s and Colitis meeting and hear somebody speak.

Conclusion

It is well documented that dependency on HPEN affects the consumer’s quality of life. Yet many of the issues that influence a consumer’s quality of life often fall outside the scope of services clinicians and/or intestinal rehabilitation centers can—or have time to—provide. The support and information available from peers and independent support groups can be invaluable. As researcher Carol Smith notes, “Any intervention that can improve the patient’s quality of life and ability to manage at home and reduce expensive complications offers significant benefit to patients, payers, and health care professionals”15.

 “I think not knowing—anything, whether it’s dealing with HPN or even things outside of that realm—I think typically people’s imagination is much worse than reality,” says a long-term HPN consumer. “You know the old saying, knowledge is power? That’s absolutely true. But also, …in any situation where people are dealing with life-threatening illnesses, they feel the sense of isolation. It isn’t coincidental that there are cancer survivor or cancer support groups all around the world….There are all kinds of support groups out there. There’s a reason these things develop, and that’s because there’s a need….It’s very important to me that Oley survive and thrive because of what it did for me [and] knowing that other people are going to continue to need it.”

Between them, D.Y., L.T., and A.D. estimate they have over seventy-five years’ experience on HPEN. At the end of an Oley teleconference, D.Y. concluded: “Here L.T., A.D., and I have just spent a nice [hour] talking on the phone, chatting. It was a really great conversation. Wouldn’t it be nice if that person just coming out of the hospital, one week with a catheter heading home, could realize that this is what your future could be. That twenty, or thirty, or thirty-five years from now you could be sitting around talking to friends that you met. And yeah, you’ve been through a lot. But here we are.”

For a list of other support groups and organizations that might be of interest to home parenteral and enteral consumers, please contact the Oley office or click here.

Reprinted as a two-part series in LifelineLetter, January/February 2013 and March/April 2013

References

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3. Kindle R. Life with Fred: 12 years of home parenteral nutrition. Nutr Clin Pract. 2003 Jun;18:235-7.

4. Huisman-de Waal,G, Schoonhoven L, Jansen J, Wanten G, van Achterberg T. The impact of home parenteral nutrition on daily life—a review. Cli Nut 2007;26:275-88. doi:10.1016/j.clnu.2006.10.002

5. Drossman D, Chang L, Schneck S, Blackman C, Norton W, Norton N. A focus group assessment of patient perspectives on irritable bowel syndrome and illness severity. Dig Dis Sci 2009; 54:1532-41.

6. Winkler M. Quality of life in adult home parenteral nutrition patients. J Parenter Enteral Nutr 2005;29(3):162-70.

7. Malone, M. Longitudinal assessment of outcome, health status, and changes in lifestyle associated with long-term home parenteral and enteral nutrition. J Parenter Enteral Nutr 2002;26(3):164-8.

8. Richards D., Carlson G. Quality of life assessment and cost-effectiveness. In: Nightingale J, ed. Intestinal failure. Cambridge: Greenwich Medical Media, Ltd. 2001:447-57.

9. Casati J, Toner B, De Rooy E, Drossman D, Maunder R. Concerns of patients with inflammatory bowel disease. Dig Dis Sci 2000;45(1):26-31.

10. Hoffman K. Psychosocial concerns of home nutrition therapy consumers. Nutr Clin Pract 1989 Apr;4:51-56.

11. Ehrenpreis B, Hilf A. Home parenteral nutrition: the consumer’s perspective. LifelineLetter 1998 Nov/Dec:1-7.

12. Johnson J, Lane C. Role of support groups in cancer care. Support Care Cancer 1993;1:52-56.

13. Marlow B, Cartmill T, Cieplucha H, Lowrie, S. An interactive process model of psychosocial support needs for women living with breast cancer. Psycho-Oncology 2003;12:319-30. doi:10.1002/pon.645.

14. Muscular Dystrophy Association. Telethon. Internet: http://www.mda.org/telethon/families.html (accessed 1 November 2009).

15. Smith C, Curtas S, Werkowitch M, Kleinbeck S, Howard L. Home parenteral nutrition: does affiliation with a national support and educational organization improve patient outcomes? J Parenter Enteral Nutr 2002;26(3):159-63.

16. Smith C, Curtas S, Robinson J. Case study of patients helping patients program. Nutrition 2001;17:175-6.

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19. The Oley Foundation. LifelineLetter. Koonin, L & M. How it all began. Internet: https://oley.site-ym.com/?How_It_All_Began (accessed 1 November 2009).

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21. Metzger L. Information exchanged at clinical nutrition week. LifelineLetter 2009 Mar/Apr;4-5.

22. Buchman A, Howard L, Guenter P, et al: Micronutrients in Parenteral Nutrition: Too Little or Too Much? The Past, Present, and Recommendations for the Future. Gastroenterology 2009;137:S1–S6.

more Calendar

2/6/2017 » 2/10/2017
Feeding Tube Awareness Week

2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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