Article Summary:
Transplantation is not considered a cure but an alternative form of treatment presenting the patient with ongoing medical and psychosocial challenges.
Psychosocial problems include struggles with family roles and relationships, sexual dysfunction, return to work, compliance to a necessary but challenging medical regimen, and the ongoing possibility of organ rejection--The recipient is caught in a situation where the technology, improved immunosuppression, and improved survival rates are available, but the certainty of staying alive until an organ is available is unknown.
The whole deal with tx is stressful. First acute injury (is a shock) and a chronic illness is a continues strain in losing relationships/finances. Then there’s the stress of “passing” the evaluation if indeed you are considered for an organ tx. & once they ARE listed, the waiting game is skyrockets their anxiety levels, for eg they might have to relocate to live closer to the facility that will provide organ transplant.
Transplant patients also know that someone has to die in order for them to receive a cadaver organ. Sometimes they may even wish an accident to happen, and then experience guilt that they have such thoughts
The recipient is caught in a situation where the technology, improved immunosuppression, and improved survival rates are available, but the certainty of staying alive until an organ is available is unknown. The recipient is caught in a situation where the technology, improved immunosuppression, and improved survival rates are available, but the certainty of staying alive until an organ is available is unknown.
Interesting note for research done on cancer pts: Peer discussion groups were helpful for women who lacked
support from their partners or physicians, but these groups were harmful for women who had high levels of support. It is uncertain whether this information holds true for transplant candidates, recipients, and caregivers. Given the fact that support groups, informational groups or a combination of the two have become standard practice in most transplant centers, we need to establish which groups have beneficial outcomes for which patients and caregivers
body image & sexuality—tx meds might not cause sexual dysfunction directly but indirectly; for eg weight gain from prednisone and hair growth from cyclosporine (esp in women) à negative feelings about one’s self
Patients often do not bring up sexual problems (Frierson et al., 1992; Raval, 1999), and doctors do not facilitate those discussions (Raval, 1999; Roche Laboratories, 1998; Tabler & Frierson, 1990).
researchers found that noncompliant recipients were at risk for an acute graft rejection at a rate of 4.17 times greater than those who were compliant. If some part of the transplant experience was negative, they were more likely to be noncompliant. Positive feelings regarding their physicians and the transplant experience increased compliance. Dew also found the quality of family relationships and the patient’s style of coping to be important to compliance.
There are few posttransplant studies designed to increase compliance in the transplant patient. Kober, Kachler, Broelsch, Kremer, and Henre-Bruns (1990) conducted a study following transplant patients for 36 months. They found that a support program did increase the patients’ compliance. However, we do not know if differences in teaching methods actually influences compliance after discharge. In summary, there is no clear data by which to determine what interventions have a positive influence on compliance in transplant candidates and recipients.
Several authors have suggested that the number of transplant patients exhibiting psychosocial problems is likely to be conservative and under reported. Dew and colleagues (1994, 1997) argue that it is difficult to get a good baseline of psychosocial problems pretransplant because patients may not want to jeopardize their acceptance for transplant.
They may fear that the disclosure of any such problems may lead to disqualification from the transplant list (Kelly et al., 1992). This underreporting may also happen posttransplant. They propose that recipients may feel compelled to report high quality of life satisfaction to the transplant team because of gratitude toward the transplant team and
because they continue to need follow-up care from that team. Others believe that recipients may manage posttransplant vulnerability
Needs for the Future
Those involved in transplant research need to shift their focus away from analyses of the psychosocial traits and states of transplant candidates. Hundreds of studies have established a large empirical understanding of those issues. A large number of predictive studies have also identified those who are at higher risk for posttransplant psychosocial
problems. Future quality of life research must be more methodologically sound, and must consider the validity of the subjective experience of the client. However, research must now focus on intervention studies in several areas.
- Noncompliance is a wide-spread problem among those who receive different forms of medical treatment. However, for transplant recipients, noncompliance can have serious and sometimes fatal consequences. Therefore, we must begin intervention research to establish empirically how to create better regimen compliance in this population. Children and adolescents are at especially high risk, and therefore, highlight the need for methodologically sound research studies.
- Return-to-work rates are lower than expected for transplant recipients. Some have not returned to work because they would loose insurance or disability coverage. However, a large segment of those unemployed are physically able to work. We need intervention programs designed to increase the return to work rates. Support groups, educational groups, and psychoeducational groups are a standard practice at many transplant centers. However, there is no empirical basis to determine which transplant candidates, recipients, and spouses may benefit from such groups and which may not. We also do not know if peer support groups have more or less benefit than educational groups. We can no longer presume that what is typically being done is working.
- Sexual dysfunction affects a large percentage of transplant candidates and recipients. Both physicians and patients find hard to deal openly with this issue. Better intervention is needed to educate both patients and physicians about the sexual issues and options so that patients and spouses are better served.
- Finally, there is established evidence that caregivers of transplant candidates and recipients are at risk for high levels of stress. Now we need intervention studies that will help us better serve this sometimes forgotten population.In summary, we have established the overall benefits of transplantation, and have identified psychosocial problem areas and those at higher risk for psychosocial problems.Now we need to turn research efforts in the direction of intervention.
My Twist on it:
- So in order to put an angle on "support groups" idea. How about:
1. The meaning of having another individual's organ attached to your own body? (issues like it's never really "yours", life long anxiety about rejection as the organ isn't yours, thus life long meds, the meaning of borrowing a body piece from someone else for the rest of your life, tackles quite a lot of psychological issues)
2. Can organ tx lead to psychiatric illnesses? ("being on the edge" for every little fever, infection, skin lesion, etc"? increased anxiety as a result. OR do they develop OCD? Due to complete cleanliness, taking meds on time, etc etc).
Just throwing out some ideas that haven't been done before :) At least I don't think and especially after reading my article i really think we need something with an edge. I personally like number 1
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