Lung Transplantation and Cystic fibrosis

Psychology in Medical Settings: Lung Transplantation and Cystic fibrosis Compiled and edited by

Gerald Ullrich In association with

Katrin Pompe, Elfriede Scharf, Sandra Schmidt, Gratiana Steinkamp, Susanne Wiedau, Rosita Wünderich & Martin Ammon, Manfred Ballmann, Hans-Jürgen Bartig, Georg Kremer, Jost Niedermeyer, Jens Penkert, Wolfgang Schulz

Cover Design: Books on Demand

Imprint Deutsche Bibliothek – CIP data applied for ISBN 978 3839147252

1st Paperback edition June 2010

© Gerald Ullrich, Schwerin, 2010 All rights reserved Produced by: Books on Demand GmbH, Norderstedt, Germany

This book is dedicated to Gratiana, my lovely wife, who gently changed my life, and to Helmut & Inge, my parents. I owe them a lot, among other things: perseverance.

Contents Preliminary remarks ..................................................................................7 Introduction ..............................................................................................9 I. The impact of CF and its treatment Vulnerability and resilience in the young teenager .................................33 Parental concerns about Pseudomonas infection...................................55 Pseudomonas aeruginosa and the risk perception of parents ................67 Patient segregation: expected and unexpected repercussions...............95 Extending the TIDES-CF Study to a health services research approach............................................................................107 II. Lung transplantation Lung transplantation in young adults: I. Quality of life and perceived benefits.............................................131 II. ‘Gift of life’ or ‘spare parts’?...........................................................159 Paediatric lung transplantation as a challenge to the health care team...............................................................................191 III. Delivery of care and the CF Team Motivational Interviewing: In-house workshops as a means to introduce new approaches to the health care team..........................203 The multiprofessional team in cystic fibrosis.........................................233 Closing remarks ....................................................................................249 Appendix ...............................................................................................255 About the authors..................................................................................261 Correspondence....................................................................................265

7

Preliminary remarks The idea to this book emerged when I was preparing to leave Hanover Medical School after 20 years of work in several multiprofessional disease related groups (see www.med-wiss.com/ullrich for details). During these years, there were always more tasks than I could adequately fulfil. And as my clinical duties always overrid the academic ones, much of the latter work has remained unfinished. But if you set off to new tasks and projects the unfinished old ones shouldn’t change the subject – so it might be wise to better finish them. The chapters in this book mostly contain results of studies that have been published only as a poster or as an oral presentation, but not as an original article in a peer-reviewed journal. Instead of a formal peer review, our work will then be critically “reviewed” by the reader. I hope this will end happily – even though I am well aware that some of the chapters would have been rewritten, if time pressure hadn’t been a major issue. I would like to say thank you to all the patients and their families who supported our studies by taking part as interviewees or questionnaire respondents! It is also with respect to their support that I felt obliged to finally publish the studies compiled in this book.

Schwerin, December 2009

Gerald Ullrich

233 Gerald Ullrich

11. The multiprofessional team in cystic fibrosis: Remarks upon ‘Standards of care’* Although being invited to speak about “standards of psychosocial care”, I prefer the more modest title of "remarks upon standards of care" in my talk. I will roughly cover the following issues: 1. The development and the current state of psychosocial care in cystic fibrosis; 2. The situation in Germany; 3. Remarks upon possible differences between psychosocial and medical standards; 4. Suggestions for establishing standards of psychosocial care.

The current state of psychosocial care Psychosocial aspects in CF have been evaluated and reported in the literature since the late 1960s.16,31,33** The primary emphasis was on the psychosocial functioning of the CF patient and family and on the psychosocial impact of the disease and its treatment. In contrast, psychosocial care is a more recent topic. The first respective state of the art was given only ten years ago during the International CF conference in Sydney. The clinical psychologist MERVIN

* This chapter is based on an invited lecture presented at the 22nd European CF Conference in Berlin, 18.6.1998. **

You will find the references on page 245.

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MILLER17 criticised in his talk that aspects of care had been greatly neglected even in the late 1980s. At the same time, in one of the rare conceptual papers devoted to on psychosocial care of CF patients, JEDLICKA-KÖHLER & GÖTZ8 stated that psychologists and psychiatrists had been engaged in psychosocial studies rather than service – even though the need for a multidisciplinary team approach had already been highlighted at that time.13 This situation has improved during the last ten years. Several papers have been published describing types of psychosocial interventions and defining those issues that are of particular importance for psychosocial support. Just to summarise selected topics of psychosocial interventions and professional support as examples for the heightened awareness concerning aspects of care: •

Psycho educational groups for parents after breaking the CF diagnosis have been established in order to help the family to adjust to the new situation;37,38

•

There are also now a number of articles covering behavioural interventions, particularly concerning feeding problems in pre-school children,22,25,26,28 to improve compliance with physiotherapy,27 which seems to be the most difficult part of CF treatment with respect to compliance;

•

Furthermore there are reports on workshops and support groups for adolescents and young adults to improve their coping with daily life and to improve their mutual support;30

•

And last but not least there are now suggestions how to design patienteducation programs1,2 or the difficult transition of adolescents from paediatric to adult CF centres3,21.

However, in spite of the broadened clinical experience since the Sydney conference we are today still far from being able to properly define standards of psychosocial care.

Standards of psychosocial care

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As BRYAN LASK11 stated in his review in 1995, there is still only limited evidence that "psychosocial assessments and interventions add anything of clinical value to the management of children with cystic fibrosis and their families" (ibid., p. 315). Although his remark may seem provocative, I think he has made an important point. Most articles on aspects of care are only descriptive in nature, and controlled studies evaluating certain interventions do not exist. This is especially true with respect to the team approach, which is the generally recommended model of psychosocial support today.5,6,36,39 For a proper evaluation of the team approach it would not be sufficient to control for the effect of a single intervention but rather to study the effect of the complete programme or network. Considering this lack of controlled studies I could stop my presentation now and simply state that defined standards of psychosocial care are virtually non-existent. However, in clinical practice a convincing effect of multiprofessional co-operation seems to exist since this approach is generally recommended and widely performed, at least in Germany. This will be my next point.

Psychosocial care: The German situation As there are no published data, I may only present the results of an unpublished survey performed by the Mukoviszidose e.V., the German Cystic Fibrosis charity, in 1994. Each of the 52 registered German CF centres received a mailed questionnaire. The aims of the survey were a) to find out how many centres actually had access to psychosocial professionals and b) what were the reasons for consultation. 49 centres covering a population of nearly 3000 patients responded (see Table 11-1). Seven of these centres can be regarded large centres with >100 patients each, 21 were medium sized with 30-100 patients and 21 were small centres with < 30 patients, respectively. 22 out of 49 centres stated that both a psychologist and a social worker would be available if needed, and 11 reported to co-operate with a psychologist or a social worker either regularly

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or on a case-by-case basis. Therefore, two thirds of German CF centres were actually able to contact at least one of these professionals. Of the 16 centres with no access to psychosocial professionals 12 were small centres, although surprisingly also one of the large centres belonged to this group. Table 11-1: Results of an unpublished survey on the access to psychologists and social workers in German CF centres of different size Access to Psychologists and Social worker

Patients per centre Total

100

Psy AND Social worker

22

6

11

5

PSY OR Social worker

11

3

7

1

None

16

12

3

1

49

21

21

7

Even if it must be admitted that having access to psychosocial staff is not equivalent to working in a multiprofessional team and although only few centres definitely work with psychologist and social worker as regular members of the team, these results suggest that at least the idea of multidisciplinary care has gained substantial popularity in Germany – in spite of the fact that neither a scientific evaluation has been performed nor standards of care have been established, so far. Another interesting study7,10 attempted to identify pre-requisites for standards of care. Medical psychologist UWE KOCH and his group from Freiburg, Germany conducted it. They asked (n=99) so-called experts* from

* “So-called” has to be explained: at the time of this investigation, psychosocial care in cystic fibrosis was just beginning, so that study participants may have been experts regarding cystic fibrosis or regarding delivery of psychosocial care, but they were actually no experts regarding psychosocial care in cystic fibrosis patients so that results must be dealt with caution!


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different professions to compose a fictitious multiprofessional team. These experts were medical and psychosocial CF staff, parents and members of self-help organizations and professionals from psychiatry and psychosomatic departments. The composition of the fictitious teams referred to: a) duties and responsibilities, b) the relative importance of each profession, c) a rating of an ideal ratio as well as a minimum ratio of staff to patients. Issues with predominant responsibility of the psychosocial staff were for instance: financial and social problems of the families, marital problems of the couple or school problems of the child. Other issues were clearly expected to be a matter of shared responsibility, such as the patient’s non-compliance, care of the terminal patient, or interaction and communication problems between parents and staff. A third group of tasks remained with disagreement between the experts as to whether the medical staff was primarily responsible or whether the whole team should be involved right from the start. Disagreement existed with regard to: the breaking of the diagnosis, to inform about the disease and its treatment, or coping with anxieties towards treatment.7 In my opinion, these results reflect an important aspect, which may easily be disregarded in the discussion of multiprofessional CF care: psychosocial care in CF does not start only until specialised staff has been consulted. Instead, there is no doubt that physicians and nurses already provide psychosocial care in many important and unique ways (cf. WALLIS 36 who also highlights that continuing support to the patient and the family should be given by all members of the CF team, “not just the social worker, psychologist and clinical nurse specialist", p. 246). Establishing standards for psychosocial care, then, should not only clarify which tasks require the help of specialised mental health professionals and how the latter should deal with respective requests. Instead, standards should also be defined such that the medical professionals may feel adequately addressed and supported in their comprehensive care for the patient and the family. KOCH and co-workers also asked the “experts” to rank the relative importance of each professional group. A social worker was regarded the

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most important professional to improve CF care, followed by a clinical psychologist. These results are in agreement with previous statements published in the literature.5,12 Finally, “experts” had to state a minimum and an ideal ratio of patient to psychosocial staff. The result was, that there should be a psychosocial post for every 69 CF patients. The respective “ideal” ratio was 1:51 patients. The same authors had previously performed similar investigations with paediatric experts treating patients with end-stage renal disease and with cancer. These resulted in a three-fold higher request for psychosocial staff for these diseases compared to CF! However, even the minimum ratio of 1:69 patients may well be an overemphasis of the need for professional support. In the largest German CF centres – which appear to be well equipped with psychosocial staff – the ratio is 1:100 CF patients. In conclusion, although the KOCH-study may be criticised in some aspects, it seems a worthwhile approach to systematically collect the experience of CF experts (as a surrogate for empirical evidence to answer the respective questions).

Differences between psychosocial and medical standards Apart from methodological questions of how to establish standards of care we should also discuss whether the same degree of standardisation can be achieved in psychosocial care as in medicine. Psychosocial care is predominantly interaction, a subject-to-subject situation, whereas the subject-object structure typical of biomedical sciences is virtually non-existent. As a consequence, processes can easily be initiated, but they can be directed and controlled only to a limited degree. The term "circular causality" which is well known in social sciences und systems theory describes this situation appropriately and implicates that a one-sided and controllable cause-effect relationship does not apply to this paradigm.


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Further limitations are related to the delivery of care. Regarding the physician, for instance, it doesn’t make a difference whether drug A or drug B is administered to the patient. In the context of psychosocial care, however, it does make a difference who administers what kind of intervention. Gender aspects present a good example. A potent drug should have the same effect whether a female or a male physician applies it. Whether a psychotherapist is male or female can however have important implications for an individual therapeutic setting. In other words, there is always a kind of interference and therefore limited neutrality. Finally, the question arises whether standardisation in the context of psychosocial care could result in unwanted feelings on the side of the patient. A standardised contact between psychosocial staff and patient might not allow enough flexibility to guarantee that the individual patient feels adequately addressed as a unique person. Two aspects seem particularly important to me: 1. The apparent limitations of standardisation in the psychosocial field may not simply be due to a lack of scientific effort. Rather, these may be secondary to the fact that psychosocial care deals with persons and not with biology. 2. There is no doubt that a critical evaluation of the efficacy of psychosocial work is worthwhile and should be performed. Importantly, the protection of and care for each individual patient must remain the central aim of psychosocial care. Considering that standards of care in the psychosocial context have not been empirically established and recommended and will differ in their precision compared to medical guidelines I would like to present some suggestions for the formulation of standards of psychosocial care. It seems reasonable to ask the International Psychosocial Clinical and Research Group to collaborate in order to establish such guidelines in the near future, and perhaps the following thoughts could be a useful starting point for these colleagues.

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Standards of psychosocial care: a personal view I think that psychosocial care, whether performed by medical or psychosocial personnel, should fulfil the following five pre-requisites: 1. It should be client-centred. That means that patient and relatives are enabled to speak about their personal expectations, feelings, and fears. This is different from simply paying attention to whether he or she is "compliant" or not (cf. TROSTLE32 for a more detailed discussion on the limitations of the compliance paradigm); 2. It should be family-oriented. This is of particular importance, as PATTERSON and co-workers20 showed that the long-term outcome of lung function and the coping strategies of the families were associated; 3. It should provide information and education about the disease. Recent results suggest that mere information giving is of limited value and needs to be accompanied by appropriate training sessions;19 4. It should use the power of mutual support of patients and families which means that group sessions should be offered whenever possible;4,14,29 5. It should be organised as a long-term approach instead of single interventions. As for the delivery of care by specialised professionals the most important question is, which is the best mode of consultation. MERVIN MILLER has already discussed this ten years ago.17 Will a proactive or a passive approach be more appropriate, i.e. should psychosocial staff be consulted only if problems arise (passive intervention), or should these professionals be regularly affiliated with CF care (proactive approach)? My impression is that there is general agreement on having social workers incorporated into the team approach,5,10,12 so that they are consulted even in the absence of problems or crisis. As for psychologists and psychiatrists it seems to me that they are consulted rather on a case-by-case basis than regularly/ proactively. Miller17 has described advantages and shortcomings of both strategies, and it seems difficult to judge which of these is preferable over the other. In Germany34,35 and in Austria23,24 a combination of both active and passive intervention has emerged. A regular co-operation with psychosocial professionals has been developed for certain situations, for example breaking the diagnosis, performing training sessions and the transition of adolescents to adult medicine. This presents a proactive approach that offers the


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opportunity to introduce the psychosocial caregiver to the family as a member of the multi-professional CF team. Reservations, which may be provoked by the consultation of a mental health professional, can thereby be reduced. As a consequence, the family is encouraged to actively consult the psychosocial professional in case of problems. Apart from these defined situations the mental health professional will see a family only if medical staff or the patient himself asks for consultation, which is in accordance with the passive approach. Compared to a totally passive approach, however, such a consultation is expected to occur more easily, as the psychologist is perceived as a member of the team. Any of the two active intervention approaches have important implications for the mental health professional’s manner in facing the family: The contact to the family has to focus on the person’s and the family’s coping strategies and resources, whereas the question of deficits, dysfunction or of psychiatric classification is not the primary objective.15 With regard to psychosocial care by special professionals it is therefore important: a) to define the organizational model of care (proactive or passive or a mixture of both), b) to concentrate on coping and the existing resources of the families rather than on dysfunctions, and c) to establish joint patient visits with both medical and psychosocial personnel to enable the family to perceive all professionals as members of the team. Moreover, this will make the team members more familiar with each other and will facilitate their mutual recognition as part of the team. This will make sure that a true team approach develops in contrast to a mere multi-professional delivery of care.

Summary The scientific discussion of psychosocial care for CF patients has expanded during the last ten years. However, it still is in its infancy. The greatest methodological problems concerning treatment evaluation refer to the team approach that is more than the sum of circumscribed interventions. There are substantial differences between medical and psychosocial standards that ought to be considered. A preliminary definition of standards

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(for the time being bound to a consensus rather than to scientific evidence) should be prepared by the International Psychosocial CF Working Group and the approach by KOCH and co-workers7 may be a valuable tool to gather expert opinions. Psychosocial care does not start with the consultation of specialised professionals. Instead, it is already part of the daily care provided by medical personnel. This needs to be considered in forthcoming standards. A mixture between an active and passive intervention approach seems most appropriate regarding the consultation of mental health professionals. This means that these professionals are regularly involved at certain instances during the treatment process and apart from these they will only work on request of patient, family or medical personnel.

Epilogue (2009) Interestingly, meanwhile there is a paper on “standards of care” that also includes suggestions concerning the psychosocial staff.9 It even gives figures about the requested patient to staff ratio. The latter should be “0.4 whole time equivalent staff for every 50 patients on full care” (ibid., p. 20). Surprisingly, the ratios are equivalent for social workers and psychologists (and dieticians), although social workers are used to be seen as regular members of the team while psychologists are not! Even more surprisingly, the suggested ratios are the same in paediatrics as well as in adult medical care (even though according to clinical experience – as well as empirically confirmed by a German multicentre health services research project on cystic fibrosis34 – we should assume that looking after adults is more demanding, given, among other things, their usually more severe disease status). These ratios rather resemble Alice’s Adventures in Wonderland: Everybody has won, and all must have prizes! Also, it might be interesting to know, whether there is at least one European CF-centre complying with the suggested ratios outlined in this consensus. In Germany there is none, as well as in the UK (J.LITTLEWOOD, personal communication). It might be politically “favourable” to communicate such ratios, as they may lend pressure to respective requests. But it might as


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well be counterproductive to communicate “standards” (not: long-term goals or ideals) that nobody actually is able to fulfil.* Finally, with regard to the European Consensus on Standards of Care9 and with particular reference to the team approach in cystic fibrosis it might still be important to insist on the argument, that psychosocial aspects are not per se the matter of a specialized group of people in the team. Wallis36 was perfectly right to request that giving support to the family is an indivisible task for all members of the team. Unfortunately, incorporating psychosocial professionals into the multiprofessional CF team may (inadvertently) lead to a kind of “dumping” psychosocial aspects to respective professions, which has been eloquently described as a process of marginalisation18 resulting in a delivery of care that is pretty different from a “holistic” or “comprehensive” one (or whatever positive attributes the reader would prefer to describe their multiprofessional approach).

* Remarkably, a recent paper on adherence to the European consensus statement reported 'satisfactory' results with respect to the availability of multidisciplinary resources and access to care.5a The only reservation referred to limited access to clinical pharmacists. However, this paper rather exemplifies how things appear bright, if you are looking through rose-colored glasses. It should be borne in mind, that the consensus statement did not only comprise suggestions about access/availability, but exactly specified patient-to-provider ratios. The latter, however, weren't even addressed in the respective survey! At least in Germany, there are of course numerous CF centres where a psychologist or a social worker is "available" (i.e. there is one at the hospital), but this doesn't tell you anything about the extent to which these health professionals are actually involved in interdisciplinary CF care.

While this in-group publication looked at the consensus statement with rose-colored glasses, another recent paper5b exemplifies how such (never ever empirically substantiated ratios) may be ‘useful’ to make policy (produce pressure): Referring to the European consensus on the quantity of (allied) health professionals at CF centres and so pretending that any European country would comply with these statements, the authors complained about the insufficient situation in Germany and even feared that these limitations might have detrimental effects on patient survival! What kind of effects?! Nothing really changed, so far, except that some experts produced ratios with unknown substantiation, but misgivings about “decreasing” standards of care are already in circulation – at least if these appear to be politically favourable...

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Acknowledgements I am grateful to Heike Dittrich-Weber, who – on behalf of the Mukoviszidose e.V. – performed the unpublished survey on psychosocial professionals at German CF centres and kindly put its results to my disposal.


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Delivery of care (9) Kerem E, Conway S, Elborn S, Heijerman H (2005) Standards of care for patients

with cystic fibrosis: a European consensus. Journal of cystic fibrosis 4 (1): 7-26. (10) Koch U, Jakob U, Siegrist B, Härter M, Eckert M (1990) [Chronic renal failure, cystic fibrosis, and cancer in childhood and adolescence. A generic evaluation of programmes funded by the ministry of social affaires and labour.] Chronische Niereninsuffizienz, Mukoviszidose und Krebserkrankungen im Kindes- und Jugendalter. Krankheitsübergreifende Evaluation der Modellprogramme des Bundesministeriums für Arbeit und Sozialordnung (BMA). Bonn: Bundesministerium für Arbeit und Sozialordnung. (11) Lask B (1995) Psychological aspects of cystic fibrosis. In: Hodson ME, Norman AP, Batten JC (Eds) Cystic fibrosis. London: Bailliere Tindall, 315-327. (12) Lavigne JV (1983) Psychological functioning of cystic fibrosis patients. In: Lloyd-Still JD (Eds) Textbook of cystic fibrosis. Boston, Bristol, London: John Wright, (13) Lloyd-Still JD (1983) The organization of a cystic fibrosis clinic. In: Lloyd-Still JD (Eds) Textbook of cystic fibrosis. Boston, Bristol, London: John Wright, 453-463. (14) Matloff ET & Zimmerman SJ (1996) Framework for a proactive parent support group: the Syracuse cystic fibrosis model. Journal of pediatric health care 10: 264-271. (15) McDaniel SH, Hepworth J, Doherty WJ (1997) Familientherapie in der Medizin. [Medical family therapy (1992)]. Heidelberg: Carl Auer Verlag. (16) Meyerowitz JH & Kaplan HB (1967) Familial responses to stress: the case of cystic fibrosis. Social science and medicine 1: 249-266. (17) Miller MS (1988) Role of the mental health professional in cystic fibrosis. In: Mellis CM & Thompson S (Eds) 10th international cystic fibrosis congress: Sydney, Australia, 5-10 March 1988. Congress abstracts. Excerpta Medica: Asia Pacific Congress Series 74, 124-129. (18) Miller T & Swartz L (1991) Integration or marginalisation? Clinical psychology as a strategy for dealing with psychosocial issues in a South African neurosurgery ward. Sociology of health & illness 13: 293-309. (19) Parcel GS, Swank PR, Mariotto MJ, Bartholomew LK, Czyzewski DI, Sockrider MM et al. (1994) Self-management of cystic fibrosis: a structural model for educational and behavioral variables. Social science and medicine 38 (9): 1307-1315. (20) Patterson JM, Budd J, Goetz D, Warwick WJ (1993) Family correlates of a 10-year pulmonary health trend in cystic fibrosis. Pediatrics 91: 383-389.


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(21) Schidlow DV & Fiel SB (1990) Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult health care systems. Medical clinics of North America 74: 1113-1120. (22) Singer LT, Nofer JA, Benson-Szekely LJ, Brooks LJ (1991) Behavioral assessment and management of food refusal in children with cystic fibrosis. Journal of developmental and behavioral pediatrics 12: 115-120. (23) Smrekar U & Ellemunter H (1993) Interdisziplinäre Teamarbeit in der Behandlung der zystischen Fibrose: Modell einer psychosomatischen Kooperation. (A multiprofessional team approach in cystic fibrosis: A model of psychosomatic ccoperation.] Paediatrie und Paedologie 28: 76-86. (24) Smrekar U & Ellemunter H (1996) [Psychological aspects of care in pediatric organ transplantation] Psychologische Aspekte der Betreuung pädiatrischer TransplantationsPatienten. Psychologie in der Medizin 7: 18-25. (25) Stark LJ, Bowen AM, Tyc VL, Evans S, Passero MA (1990) A behavioral approach to increasing caloric consumption in children with cystic fibrosis. Journal of pediatric psychology 15: 309-326. (26) Stark LJ, Knapp LG, Bowen AM, Powers SW , Jelalian E, Evans S et al. (1993) Increasing calorie consumption in children with cystic fibrosis: replication with 2-year follow-up. Journal of applied behavioral analysis 26: 435-450. (27) Stark LJ, Miller ST, Plienes AJ, Drabman RS (1987) Behavioral contracting to increase chest physiotherapy. A study of a young cystic fibrosis patient. Behavior modification 11: 75-86. (28) Stark LJ, Powers SW, Jelalian E, Rape RN, Miller DL (1994) Modifying problematic mealtime interactions of children with cystic fibrosis and their parents via behavioral parent training. Journal of pediatric psychology 19: 751-768. (29) Strauss GD, Pedersen S, Dudovitz D (1979 ) Psychosocial support for adults with cystic fibrosis: a group approach. American journal of diseases of children 133: 301-305. (30) Szewwczyk LW, Agnew-Coughlin J, Draper M, Geremia J et al. (1996) Encouraging medical adherence in school-age children with CF: A self-management workshop using a team approach. Pediatric pulmonology Suppl. 13: 339 (No. 471) [Abstract].

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adolescents. California medicine 110: 371-374. (32) Trostle JA (1988) Medical compliance as an ideology. Social science and medicine 27: 1299-1308. (33) Turk J (1964) Impact of cystic fibrosis on family functioning. Pediatrics 34: 67-71. (34) Ullrich G (1993) [Psychosocial care in cystic fibroisis. Results of a multicentre study] Psychosoziale Versorgung bei Mukoviszidose. Ergebnisse einer multizentrischen Studie. (Reihe: Studien zur Jugend- und Familienforschung, Bd. 13, Hrsg. F. Petermann). Frankfurt a.M., Bern, New York, Paris: Peter Lang Verlag. (35) Ullrich G, Hellmann-Backhaus U, Bartig HJ (1996) [Treatment and rehabilitation? Remarks upon the importance and characteristics of psychosocial care in cystic fibrosis] Behandlung und Rehabilitation? Überlegungen zum Stellenwert und zur Eigenart psychosozialer Versorgung bei Mukoviszidose/ Cystische Fibrose (CF). In: Michels HP (Eds) Chronisch kranke Kinder und Jugendliche. Psychosoziale Betreuung und Rehabilitation. [Chronically ill children and adolescents. Psychosocial care and rehabilitation] Tübingen: DGVT (Forum Bd. 30), 125-144. (36) Wallis C (1996) Cystic fibrosis: paediatric aspects. British journal of hospital medicine 55 (5): 241-247. (37) Walton MK (1988) Educational outpatient programme for parents of children recently diagnosed with cystic fibrosis. In: Mellis CM & Thompson S (Eds) 10th international cystic fibrosis congress: Sydney, Australia 5- 10 March. Congress Abstracts. Excerpta Medica: Asia Pacific Congress Series 74, 143-143. (38) Walton MK & Admi H (1988) Evaluation for an in-hospital teaching programme for parents of children recently diagnosed with cystic fibrosis. In: Mellis CM & Thompson S (Eds) 10th international cystic fibrosis congress: Sydney, Australia 5- 10 March. Congress Abstracts. Excerpta Medica: Asia Pacific Congress Series 74, 143-144. (39) Webb AK (1995) Communicating with young adults with cystic fibrosis. Postgraduate medical journal 71: 385-389.

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About the authors Martin Ammon; Social worker As of 1989 member of the cystic fibrosis group; Div. of Paediatric Pulmonology, Paediatric Department at Hanover Medical School. Manfred Ballmann; PD Dr. med., Pediatrician As of 1993 head of the cystic fibrosis group; Div. of Paediatric Pulmonology, Paediatric Department at Hanover Medical School. Hans-Jürgen Bartig; Psychologist and Psychological Psychotherapist From 1990-2008 member of the cystic fibrosis group; Div. of Paediatric Pulmonology, Paediatric Department at Hanover Medical School. As of 2008 Mr. Bartig has retired from business. Georg Kremer: Dr. public health, Psychologist and Psychological Psychotherapist At the time of the study Dr. Kremer was head of therapists at Evangelisches Krankenhaus Bielefeld, Germany, vBA Bethel, Centre of Psychiatry & Psychotherapeutic Medicine, Dep. of Addictive Disorders. He also translated the first edition of Miller & Rollnick (Motivational Interviewing) to German. Jost Niedermeyer; Dr. med., Chest Physician At the time of the study, Dr. Niedermeyer was acting head of the Division of Pulmonology, Department of internal medicine at Hanover Medical School. Meanwhile, Dr. Niedermeyer is head of Department of Internal Medicine I, Respiratory Medicine, Cardiology & Angiology, at Bad Oeynhausen Hospital, Germany.

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About the authors

Jens Penkert; Psychologist At the time of the study J. Penkert was student at the Department of Psychology, Division of Clinical Psychology, Psychotherapy and Diagnostics at Technische Universität Braunschweig. The respective study was part of his diploma thesis, jointly supervised by Dr. Ullrich and Prof. Schulz. Katrin Pompe; Psychologist At the time of the study K. Pompe was student at the Department of Psychology, Division of Clinical Psychology, Psychotherapy and Diagnostics at Technische Universität Braunschweig. The respective study was part of her diploma thesis, jointly supervised by Dr. Ullrich and Prof. Schulz. Elfi Scharf; Psychologist At the time of the study E. Scharf was student at the Department of Psychology, Division of Clinical Psychology, Psychotherapy and Diagnostics at Technische Universität Braunschweig. The respective study was part of her diploma thesis, jointly supervised by Dr. Ullrich and Prof. Schulz. Sandra Schmidt; Dr. med., Paediatrician At the time of the study S. Schmidt was research assistant of Prof. Steinkamp. Wolfgang Schulz; Prof. Dr. phil. , Psychologist Department of Psychology, Division of Clinical Psychology, Psychotherapy and Diagnostics at Technische Universität Braunschweig.Main research areas: Alcoholism and addiction, counselling and psychotherapy, quality management and assessment in ambulatory and in-patient psychotherapy.

About the authors

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Gratiana Steinkamp; Prof. Dr. med., Paediatrician From 1986 to 1993 Prof. Steinkamp held the first medical full-time post on cystic fibrosis in Germany at Hanover Medical School. She then became head of clinical research divisions at Wellcome and later at GlaxoWellcome. As of 1996 she works as a freelancer (www.med-wiss.com). Gerald Ullrich; Dr. rer. biol. hum.; Psychologist and Psychological Psychotherapist. From 1987 to 2009 member of the Division of Paediatric Pulmonology, Paediatric Department at Hanover Medical School. He was member of the cystic fibrosis team, with primarily academic duties, and had clinical duties in several other paediatric teams (for details see: www.med-wiss.com/en/ullrich). Dr. Ullrich now works in private practice. Susanne Wiedau; Psychologist At the time of the study S. Wiedau was student at the Department of Psychology, Division of Clinical Psychology, Psychotherapy and Diagnostics at Technische Universität Braunschweig. The respective study was part of her diploma thesis, jointly supervised by Dr. Ullrich and Prof. Schulz. Rosita Wünderich; Art therapist and Child Psychotherapist As of 1996 member of the cystic fibrosis group; Div. of Paediatric Pulmonology, Paediatric Department at Hanover Medical School. Main duties: cystic fibrosis and paediatric lung transplantation.