A pilot study on perceptions of professional support among lung transplant recipients and accompanying relatives

Consulting the “experts”: a pilot study on perceptions of professional support among lung transplant recipients and accompanying relatives

Ullrich, Gerald

Background-Lung transplantation is extremely stressful for patients and accompanying support persons.

Purpose-To improve delivery of care, we designed a cross-sectional study about unmet needs and perceived helpfulness of staff.

Methods-The sample consisted of 30 adult lung transplant recipients with cystic fibrosis (and 22 relatives) and 20 age-matched recipients with other reasons for transplantation (and 17 relatives). Mean survival since transplantation was 5 years. Data were collected via questionnaires (numerical rating scales and fill-in-theblank items).

Results-Most patients in both groups were satisfied with staff support (nurse, doctor) especially during the acute stage of illness. Relatives were less satisfied at all stages. Patients’ satisfaction with doctors’ support was higher after than before transplantation, but the opposite was true for relatives. Insufficient continuity of care was the most frequent critical comment from patients and support persons. Recommendations to improve delivery of care included providing access to psychosocial professionals and broadening the information provided before transplantation.

Conclusions-Regular screening of customer satisfaction should become routine. Particular attention should be paid to support persons. (Progress in Transplantation. 2005;15:115-122)

Since the early 1990s, lung transplantation has evolved into an effective therapy for end-stage pulmonary failure of various causes, mainly obstructive lung disease, cystic fibrosis, pulmonary hypertension (primary, secondary), and idiopathic pulmonary fibrosis.1 Nowadays, lung transplantations are performed with considerable success as far as survival after transplantation2,3 and quality of life.4-6 Thus, from a medical point of view, lung transplantation has become customary (or at least a “viable option”).7 However, transplantation will always remain a perilous and frightening experience for patients and their loved ones. Not surprisingly, the patient’s psychological stability and social support system are perceived as essential prerequisites of a successful outcome of transplantation. Thus, those factors are carefully considered during the evaluation process.8-10 Furthermore, consensus is growing that transplant recipients should have access to psychosocial professionals.11-13 However, some have suggested that psychosocial support should not be delegated to allied health professionals but should remain a core task of the medical staff.14,15 Yet we know of no data on staff members’ provision of support for transplant recipients and only a little data on the situation for accompanying relatives.16,17

This study, which was performed in 2001, focuses on the perceptions of patients and their relatives about support from staff and their unmet needs. All participants in the study are from the transplant center at Hannover Medical School. More than 550 double lung transplantations have been performed at this center since 1987, making it the largest center of its kind in Germany.

The delivery of care and the team structure at Hannover Medical School has changed considerably since 1987. Until 1995, patients with cystic fibrosis, who are a large group among lung transplant recipients, were routinely looked after by psychosocial staff (psychotherapists, social workers) from the cystic fibrosis team of the pediatric department, where even adults with cystic fibrosis were routinely treated until 1993. After all adult patients with cystic fibrosis were transferred to the department of internal medicine,18 the pediatric psychosocial service was maintained until 1995. Since then, patients with cystic fibrosis (including those who received transplants) had access to a psychologist and a social worker from the adult cystic fibrosis team. Unfortunately, those positions were cancelled in 2000, and patients with cystic fibrosis then received the same kind of psychosocial support as other patients. Unlike the early period of multidisciplinary care for cystic fibrosis, all transplant candidates and recipients who did not have cystic fibrosis had access to a psychologist (from the department of psychosomatic medicine) only during the pretransplantation evaluation interview. In case of severe problems after transplantation, access was (and is) possible on a consultation basis only. This service is delivered by the same department. A medical social worker has never been a regular member of the transplant team, but since 2001 the department of thoracic and cardiovascular surgery has established a position for a clinical nurse specialist. One of her major tasks is to give psychosocial support to patients and relatives and to improve access to mental health professionals from the psychosomatic unit or to a medical social worker from the general social service of the hospital, as appropriate.

Methods

The present survey is part of a larger retrospective study on psychological aspects of transplantation in adults with cystic fibrosis versus patients with other lung diseases such as pulmonary hypertension (primary, secondary) or idiopathic pulmonary fibrosis. Although the principal investigation relied on qualitative data (verbatim transcribed semistructured interviews), issues concerning perceived helpfulness of professional support were assessed with questionnaires that contained both open and standardized response formats. The questionnaires were designed (by G.U.) for this study. However, no preliminary assessment of the reliability or validity of the questionnaires was done.

Questionnaires

The questionnaire given to patients consisted of 3 main parts: (1) demographic characteristics at the time of transplantation and at the time of the inquiry (7 items), (2) perceived staff support (5 items), and (3) utilization and perception of support from mental health professionals ( 11 items; data are part of a separate paper). “Staff support” meant verbal and nonverbal signs that were perceived as personal and emotional support (empathy). Staff support was broken into support from nurses and support from doctors. Furthermore, support had to be rated for different periods (“waiting period” and “at transplant” for nurses; “waiting period,” “at transplant,” and “after discharge” for doctors). Answers were given on a 4-point numerical rating scale (“very helpful” to “not at all helpful”). An additional fill-in-the-blank question asked about deficits with respect to the support provided (or suggestions for improvement). Dissatisfaction with care may be given a different priority than other aspects of the lung transplant experience. Therefore, we indirectly assessed the patient’s priorities with a final fill-in-the-blank question: If you had the opportunity to design the medical and psychosocial care of lung transplant patients, what would you enhance first?

The questionnaire for relatives was designed similarly. The first part consisted of items concerning the relatives’ situation and strains during the support period (data are reported elsewhere). The second part related to perceived support from staff members, and the third dealt with support from psychosocial staff (hospital or at home). The first 2 items of the second part concerning perceived staff support asked about being informed and feeling involved in patient care. Ratings were given on a 5-point numerical rating scale (“very satisfied” to “very dissatisfied”) and differentiated nurses from doctors. Then, relatives had to rate how they perceived the staff with respect to personal-emotional support. Answers differentiated the time course (“waiting period,” “at transplant,” “after discharge”) but did not differentiate between nurses and doctors. Two final fill-in-the-blank questions asked what should be done to ameliorate the patient’s and the support person’s situation, respectively.

Procedure

As stated earlier, the principal study compared transplant recipients with cystic fibrosis with other recipients. Because of the causes and courses of the respective diseases, lung transplant recipients who do not have cystic fibrosis usually are considerably older than recipients who do have cystic fibrosis. This difference suggests thai these patient groups receive transplants at remarkably different stages in their lives. For instance, in a study by Lanuza et al,1” the mean age of recipients with cystic fibrosis was 28 years, whereas the mean age of the other recipients was 39 years. Therefore, we age-matched the patients who did not have cystic fibrosis to the patients with cystic fibrosis. For ethical reasons, we excluded those patients who urgently awaited retransplantation or who had just received another organ. Patients who had received a transplant less than 12 months earlier also were excluded.

All 37 eligible recipients with cystic fibrosis and the 29 preselected recipients without cystic fibrosis were asked to participate in the study (1-time mailing). They received a letter with a detailed description of the study design (the questionnaire described earlier, further questionnaires concerning quality of life, and an announcement of a semistructured interview at a forthcoming outpatient visit). Moreover, they were asked to include in the study the person who provided them with most support at the time of transplantation. The patient then had to forward another letter (study information and a questionnaire as described earlier) to this support person, who anonymously returned the questionnaire to us.

Informed Consent and Approval

The study was approved by the local ethics committee. Patients and relatives were informed about the goal of the study and that participation was voluntary. Patients signed informed consent forms; for the (anonymous) relatives, the returned questionnaire was considered equivalent to consent.

Study Sample

Thirty of the 37 transplant recipients with cystic fibrosis and 20 of the 29 transplant recipients who did not have cystic fibrosis participated in the study The mean time since transplantation was 5 years (Table 1).

Even though we age-matched the 2 groups, there were still significant differences: At the time of transplantation, most recipients with cystic fibrosis but only a minority of recipients who did not have cystic fibrosis were still living with their parents, indicating delayed social maturation. Moreover, whereas recipients with cystic fibrosis were predominantly male, most recipients who did not have cystic fibrosis were female. Also, recipients with cystic fibrosis seemed to show more improvement in lung function after transplantation than did other recipients (which would correspond to previous observations20-22), even though the difference was not statistically significant. Lung function at discharge was equal, but functional improvement during the rehabilitation period seemed greater in recipients with cystic fibrosis than others, resulting in slightly better lung function in recipients with cystic fibrosis at the time of the study.

Because social maturation of recipients with cystic fibrosis appeared to be delayed, it was no surprise that support persons in the cystic fibrosis group were more often parents than partners or other persons (Table 1). No characterization of the support person was done other than the kind of relationship to the patient. Even though not all support persons were relatives in a literal sense, we will speak of support persons and relatives as synonymous. The response rate of relatives was 73% in the cystic fibrosis group and 85% in the non-cystic fibrosis group. No relatives in the sample were associated with a patient who had decided not to participate in the principal study.

Data Analysis

Given the exploratory nature of the present study, the perspective was to learn how transplant recipients and relatives (as “consumers”) perceived the care provided, rather than testing predetermined hypotheses. Open-ended questions are analyzed by grouping responses according to content. By using this approach, the intention is not to make generalizations but to inform hypothesis generation.

Statistical tests on items comparing frequencies (sex, housing situation) were performed by χ^sup 2^ test (person); numerical items (lung function, rating scales) were analyzed regarding group differences (cystic fibrosis versus non-cystic fibrosis, patient versus relatives) by t tests for independent groups. Further statistical tests (paired / tests) were performed regarding different evaluations during the course of the transplantation process (waiting period, at transplant, rehabilitation period). Statistical analysis was performed by using the Statistical Package for Social Sciences (SPSS, Inc, Chicago, Ill).

Responses on fill-in-the-blank questions were grouped according to content.

Results

Professional Support From the Patient’s Point of View

As regards perceived support from doctors and nurses, both groups of patients agreed that support during the acute stage of the transplantation process was significantly more helpful than during the waiting period (P = .01). One third of patients were dissatisfied with help from nurses during the waiting period, 28% were dissatisfied with physicians’ support during this period (Figure 1).

Physician’s support was also evaluated for the rehabilitation period (mainly outpatient clinic). The respective ratings were similar to those at transplantation and significantly better than during the waiting period (P

Table 2 shows critical comments on professional support or suggestions to improve it, respectively. Interestingly, the majority of comments related to the doctor-patient relationship. The most frequently mentioned single items were (1) insufficient information about issues related to self-management after discharge (eg, role of hygiene, adverse effects of medications), (2) improve continuity of care after discharge (which refers to the frequent rotation of doctors at the outpatient clinic), (3) insufficient commitment (eg, “For the whole waiting period, being evaluated for transplant and entering the waiting list, delivery of care seemed strange and impersonal to me, even aloof. At that time, this made me feel pretty vulnerable”).

Lack of support from psychosocial staff was mentioned by 9 recipients. One comment nicely describes the ambivalence that is typically shown toward such offers: “There should be psychological support at transplantation. The initial contact with the psychologist ought to be proactive since most patients feel embarrassed to call for one.”

Four patients (all with cystic fibrosis) did not mention any critical comments/suggestions. Their aforementioned ratings of professional support did not differ from the ratings of patients who made comments, so that omission of comments does not indicate greater satisfaction with care.

As mentioned earlier, dissatisfaction with care may have a high or a low priority as compared with other aspects of the lung transplantation experience. We indirectly tried to assess these priorities with a final fill-inthe-blank question about what patients would enhance in the first place. Few patients suggested previously unmentioned aspects (eg, improve physiotherapy) whereas the vast majority of suggestions fell into the categories already outlined in Table 2. To ask about individual priorities even underlined the predominance of concerns about the doctor-patient relationship: 23 of 50 patients mentioned 1 or more aspects belonging to this category, and the most frequently mentioned suggestion referred to the rotation of physicians at the outpatient clinic (n = 10). Aspects concerning information giving and access to psychosocial staff were mentioned by 11 patients each, and 12 patients made not otherwise categorized comments.

Professional Support From the Relatives’ Point of View

Professional support of the accompanying relative was differentiated regarding aspects of information giving and involvement on the one hand and personalemotional support (empathy) on the other. About 10% to 15% of relatives were “dissatisfied” or even “very dissatisfied” with information giving and feeling involved (Figure 2). One person even felt disregarded: “When the operation was over-in the ICU and in the regular ward, too-I felt as if I even didn’t exist!”

Regarding personal-emotional support from the staff, Figure 3 shows ratings from relatives. Relatives rated helpfulness of staff markedly worse than patients had rated it (Figure 1) during all stages. Even during the acute illness stage (which showed the best ratings among relatives as well as patients), one third of relatives were dissatisfied.

It may be argued that it probably makes a difference whether the accompanying relative is partner or mother (as mothers may tend toward overprotection and hence be more likely to regard professional support as insufficient). We therefore reanalyzed ratings on information giving and personal-emotional support, but we did not find differences between mothers and partners as support persons. Also, we found no statistically significant differences with respect to the patient’s diagnosis (cystic fibrosis, non-cystic fibrosis).

Two final fill-in-the-blank questions invited respondents to make suggestions to enhance the situation of (1) the transplant recipient and (2) the accompanying relative. Twelve relatives did not answer or responded that they had no suggestions. They scored significantly better on ratings of information giving, so that omission of answers may be interpreted as a sign of satisfaction. The remaining relatives’ suggestions are shown in Tables 3 and 4.

Again, ensuring continuity of care was the most frequently mentioned specific item, and improving the doctor-patient relationship (to which we attributed this aspect) was the predominant category. Overall, suggestions with respect to the patient’s situation show a remarkable correspondence to suggestions made by patients themselves.

As regards enhancement of the support person’s situation, information giving (before transplantation and especially during the inpatient period) and having someone to talk to (physician, psychosocial staff) were predominant themes. Furthermore, because accommodation was often insufficiently organized (if at all), several respondents urgently expected the hospital to improve this situation at least during the first days following the transplantation.

Discussion

To our knowledge, only 1 published article23 has explicitly addressed the helpfulness of professional support of transplant patients. Participants in that study on 175 heart transplant candidates had to rank various forms of professional support according to helpfulness. Giving medical information (eg, regarding evaluation for transplantation, catheterization, medical tests) was rated most helpful, whereas providing information on psychosocial issues (eg, seeing a marital or family counselor, discussing role changes at work) was rated as least helpful. The mean time of being listed for transplantation was only 51 days, however, so the emphasis on getting information about medical and procedural aspects is understandable. Furthermore, support from medical staff was considered as merely information giving, whereas the present study focuses on professional support in a more psychological sense. Kurz,24(p497) in an interview study on 12 well spouses of lung transplant recipients, mentioned that “physicians and nurses (in the hospital) were labeled ‘wonderful’ as they kept spouses ‘up to date and never lied.'” However, after discharge from the hospital, team members were less helpful: “Most (spouses) expressed dismay that no one ever inquired about their health, feelings, life, or work. One man shared, ‘The family is really on their own.’ When discussing the hierarchy of the team another indicated that the spouse is the bottom of the rung” [ibid]. Saxe-Braithwaite and Chapman,17(p77) in the first article on the support person’s situation, indirectly criticized the lack of professional support for the accompanying person, too: “Why is it that the program requires each candidate to be accompanied by a support person, but does not provide reinforcement of that role as they do for the patient’s role?”

Given that no comparative data on the helpfulness of professional support for lung transplant recipients are available, the present data may well be interpreted as positive feedback: the majority of participants scored in the satisfaction range at any stage both for nurses and for physicians. Yet, because several authors25-27 have mentioned a positive bias among transplant recipients, we should take figures of dissatisfaction ranging from 8% (physicians at transplantation) to 36% (nurses during the waiting period) seriously. With respect to the high priority most centers put on the patient’s social support system, we should be particularly concerned about the large number of dissatisfied support persons. As Buse and Pieper28(pp686f) rightly state, support for the accompanying person “may contribute not only to the family welfare but also to patient adjustment.” Therefore, an “opportunity for the spouse also to develop a therapeutic relationship with one or more transplant team members should be facilitated.28(p647) The provision of such opportunities should be one of the tasks of clinical nurse specialists and transplant nurse coordinators, who play “a key role in coordinating the patient’s care,”11(p192) at least in some centers (including Hannover Medical School, where such a position was established in 2001). If no such coordinator exists at a center, our data may serve as an additional argument to create such a position!

Also, even though some authors29,30 mentioned a reluctance of transplant patients toward support from mental health professionals, the present study showed that a substantial number of patients and relatives would have appreciated access to respective staff. They should be regular members of a multiprofessional transplant team, even though funding remains a problem and the coordination of sometimes competing agendas of the disciplines may be difficult, too.13

However, any conclusions from our study have to be considered in light of several methodological limitations: we investigated only a rather small number of patients and relatives. Therefore, only profound effects could have been detected. Furthermore, the questionnaires were designed for the purpose of this study and have face validity only. Content analysis of fill-in-the-blank questions is prone to subjective bias, and some respondents may have experienced the same feelings or ideas but failed to fill them in.

Our study should nonetheless encourage us to routinely consider customers as experts and to use their experience to enhance our routines and delivery of care.

Acknowledgments

We wish to thank the participants for their cooperation and the Mukoviszidose e.V., Bonn, Germany, for financial support. Part of the study results were presented at the 26th European Cystic Fibrosis Conference in Belfast, Ireland, June 2003.

G. Steinkamp was particularly helpful in letting S. Schmidt join the team. The following members of the lung transplant research project were helpful in reviewing and commenting on previous drafts of the manuscript: H. J. Bartig (Hannover Medical School), J. Penkert. E. Scharf, and W. Schulz (all Psychology Department, University of Braunschweig, Germany). We also thank O. Dammann (Hannover Medical School) for comments on a previous draft and the anonymous reviewers for their comments to improve the article.

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Gerald Ullrich, Heyka Jänsch, Sandra Schmidt, Martin Struber, Jost Niedermeyer

Department of Pediatric Pulmonology and Neonatology (GU), Department of Respiratory Medicine (HJ, JN), Clinical Research (SS), Department of Thoracic and Cardiovascular Surgery (MS), Hannover Medical School, Hannover, Germany

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