ORIGINAL ARTICLE

Barriers to using psycho-oncology services:a qualitative research into the perspectives of users,their relatives, non-users, physicians, and nurses

Melanie Neumann & Maren Galushko & Ute Karbach &

Hadass Goldblatt & Adriaan Visser & Markus Wirtz &

Nicole Ernstmann & Oliver Ommen & Holger Pfaff

Received: 29 May 2009 /Accepted: 13 August 2009# Springer-Verlag 2009

AbstractPurpose The present explorative study was designed as aqualitative evaluation of the psycho-oncology services (POS)available at a psycho-oncology institution (POI) in Germany.The study focused on barriers to using these services.Methods Seven focus groups and five complementaryindividual interviews were conducted with POS users, theirrelatives, and POS non-users from a German POI, as wellas with oncology physicians and nurses from an affiliatedhospital. The focus groups and individual interviews wereaudiotaped and fully transcribed. Data were analyzed usingthe documentary method.Results Four utilization barriers were identified: (1)patients’ and physicians’ information deficits about POI

and POS, (2) patients’ and physicians’ subjective normsregarding POS, (3) lack of organizational and therapeuticintegration of POI and POS into routine oncology care on theward, and (4) specific characteristics of cancer patients. Themost important finding was that lack of organizational andtherapeutic integration of POS in routine oncology care onthe ward might have a lasting, negative effect on patients’ andphysicians’ information deficits and subjective norms.Furthermore, the identified utilization barriers seem to be amulti-causal problem with complex interdependencies.Conclusion Based on these results, the organizational andtherapeutic integration of POS in routine oncology care onthe POI ward appears to be a useful tool in offering widelyaccessible therapies and providing patients with concise,

Electronic supplementary material The online version of this article(doi:10.1007/s00520-009-0731-2) contains supplementary material,which is available to authorized users.

M. Neumann (*) :U. Karbach :N. Ernstmann :O. Ommen :H. PfaffCenter for Health Services Research Cologne (ZVFK),Medical Department of the University of Cologne,Eupener Strasse 129,50933 Cologne, Germanye-mail: mella.neumann@web.de

M. Neumann :U. Karbach :N. Ernstmann :O. Ommen :H. PfaffCenter for Integrated Oncology (CIO),Medical Department of the University of Cologne,Kerpener Strasse 62,50937 Cologne, Germany

M. GalushkoDepartment for Palliative Medicine,University Hospital Cologne,Kerpener Strasse 62,50937 Cologne, Germany

H. GoldblattDepartment of Nursing, Faculty of Social Welfareand Health Sciences, University of Haifa,Mt. Carmel 31905, Israel

A. VisserHelen Dowling Institute, Center for Psycho-oncology,Rubenslaan 190,Utrecht, The Netherlands

M. WirtzInstitute for Psychology, University of Education Freiburg,Kartäuserstr. 61b,79117 Freiburg, Germany

H. PfaffDivision of Medical Sociology of the Institute and Policlinicfor Occupational and Social Medicine, University of Cologne,Eupener Strasse 129,50933 Cologne, Germany

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straightforward information via different channels, such aspersonnel, brochures, and the Internet. Nevertheless, theresults should be interpreted tentatively, due to theexplorative character of this study.

Keywords Barriers . Utilization . Psycho-oncology services

Introduction

Psycho-oncology has developed in response to clinicalneed. Its primary aim is to alleviate emotional distress,which afflicts many cancer patients (CPs) [14]. A consentedgoal of psycho-oncology services (POS) is, therefore, toimprove coping strategies and enhance quality of life forpatients and their families through psychosocial assessment,support, and specific interventions [24].

Nevertheless, a key attitudinal barrier to using POS is thepersistent negative attitude toward mental illness andpsychological problems [15]. This long-held stigma hasobstructed the integration of the psychosocial domain intototal cancer care and the identification of distressed patients[17]. Moreover, it has made CPs reluctant to acknowledgetheir psychological problems and to seek counseling [16].In addition to the negative stigma attached to the illnessitself, CPs are also afraid of being labeled as “psychiatric”or “weak” if they seek help [16]. The primary userpopulations of POS are white, middle- to upper-middle-class women, where the stigmatized perception of POS isless prevalent than among men, the elderly, minoritygroups, and lower class individuals [13, 25, 40].

Why do psycho-oncology institutions (POIs) primarilytarget this particular CP population? Does the nature of POIand POS impede their ability to meet the needs of someCPs? And how can healthcare professionals facilitate andcontribute to patients’ POS utilization? As far as we know,only few studies have investigated these questions. Those thathave [e.g., 8, 13, 17, 18, 36, 41] focused on patient-specificcharacteristics and attitudes that determine their intention toparticipate and their actual participation in POS (see Fig. 1,variables without a black frame). In light of this, our studyexamined patient and POI/POS-specific characteristics, inaddition to healthcare professionals’ perceptions and attitudestoward POI and POS. These variables, combined, mayinfluence CPs’ perceptions of and attitudes toward POI andPOS, thereby serving as determinants for patients’ intention toparticipate and their actual participation in POS (see Fig. 1).

As part of a larger research [29], the present studyconducted a qualitative evaluation in a German POI,focusing on the following key questions:

1. How did users, their relatives, and non-users subjec-tively perceive the POS, in terms of advantages,disadvantages, strengths, and weaknesses?

2. How did oncology physicians and nurses in theaffiliated hospital experience the POI and POS? Howdid they assess the benefits and outcomes for theirpatients? And how did psycho-oncology care deliveryinfluence their everyday work?

The present analyses focus on the barriers to using POS.

Methods

Research setting

The research setting was a German POI located near ahospital. The POI offers five core POS: psychologicalcounseling, art, gestalt, music, and exercise therapy. MostPOS were provided within the POI building. Psychologicalcounseling and, to a lesser extent, music and art therapy,were held on some oncology wards in the nearby hospital.The psychotherapists visited the ward at the physicians’ and/or nurses’ request and made their rounds on most workdays.The evaluated POI and the hospital’s oncology departmentsdid not employ routine distress screening of CPs.

Sample

Seven focus groups and five complementary individualinterviews were conducted with POS users, their relatives,and POS non-users from a German POI, as well as withoncology physicians and nurses from an affiliated hospital.Focus groups were purposefully sampled [23, 30]. Patientsample criteria were use of POS, gender, and age [12]. Eachfocus group was organized as homogeneously as possibleto encourage participants to speak freely. However, acomparison between the groups highlighted areas in whichparticipants’ perspectives differed, and the resulting impli-cations of this [26, 37].

The focus group inclusion requirement for POS userswas to be currently utilizing at least one of the five corePOS of the evaluated POI. Exclusion criteria includedinsufficient knowledge of German and physical or cognitiveimpairments that might interfere with participation. POSnon-users’ inclusion criterion was not having used any POSof the evaluated POI. Exclusion criteria were the same asfor POS users. Oncology physicians and nurses from thenearby hospital, with at least 2 years experience working inoncology, were eligible for this study. POS users’ relativeshad the same exclusion criteria as POS users.

Participants

Between May and October 2005, seven focus groups wereconducted with 27 participants, as well as five semi-structured individual interviews (see Table 1). The low

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response rate in focus group 2 was due to the criticalphysical condition of many inpatients who cancelledparticipation at short notice. Low response rate in focusgroups 4 and 5 was due to the low interest and motivationof non-users and of users’ family members.

Participants completed short questionnaires followingthe focus groups or individual interviews to collect theirindividual background data (e.g., demographics and illness-specific characteristics). Rows five to seven of Table 1present information about participants’ gender and agerange. Patients’ cancer duration ranged from 3 to123 months, 73.5% were in the initial diagnosis stage andhad diverse diagnoses (e.g., breast cancer, leukemia, andlung cancer). To ensure anonymity, health professionals’specific job characteristics are not reported here. The studywas approved by the Medical Faculty Ethics Committee atthe University of Cologne, Germany.

Data collection

Participants were recruited in two different ways. First, thePOI informed their patients (those treated and not treated atthe hospital). Second, the study team (M.N., M.G., and U.K.)

collectively contacted oncology physicians and nurses fromthe hospital, gave them an information sheet about theongoing study, and asked for their telephone numbers. Theresearch team then invited them, by telephone, to participatein the focus group.

A different approach was used to recruit cancer inpatientsat the nearby hospital. One of the authors (M.G.), togetherwith a psycho-oncologist from the POI, visited the patientson the wards, distributed information sheets, and invitedthem, in person, to participate in a focus group. Followingthe users’ focus groups, participants were asked if one oftheir relatives would like to attend a similar focus group.These relatives were contacted by telephone and sent aninformation sheet. Informed consent was obtained from allparticipants.

Focus groups and individual interviews lasted 2 h. Anexperienced moderator (M.N.) addressed several issues(focal areas) for discussion (see core questions in theintroduction) and ensured that the discussion focused onthe topic of interest. The moderator’s participation in thediscussion was minimal to create a situation as close aspossible to “naturally occurring interaction” [32]. Besidescore questions, the moderator asked supplementary ques-

Table 1 Sampling overview and selected demographic characteristics of the participants

POS usersnot treated inthe H (FG 1)

POS userstreated asinpatients inthe H (FG 2)

POS userstreated asoutpatients inthe H (FG 3)

POS non-userstreated asinpatients inthe H (FG 4+ II)

Familymembers ofPOS users(FG 5)

Physiciansand nursesfrom the H(FG 6)

Physiciansand nursesfrom the H(FG 7+ II)

Contacted 7 9 16 17 18 13 6

Participated 6 3 7 2+3 3 6a 2+2b

Response rate in percent 85.7 33 43.8 29.4 16.7 46.2 66.7

Male 0 2 2 2 2 3 0

Female 6 1 5 3 1 3 4

Age range 40–70 20–45 25–80 18–70 40–60 30–50 25–50

FG focus group, II individual interview, H hospitala Three nurses and three physiciansb Two nurses and two physicians

Patients’ perceptions of & attitudes toward

POI and POS

Characteristics ofPOI and POS

Intention to participate / actual participation in POS

Patient-specific characteristics

Healthcare professionals’perceptions of & attitudes

toward POI and POS

Fig. 1 Model for investigatingthe intention to participate/actualparticipation in POS: variableswithout a black frame wereexamined in other studies. Vari-ables with a black frame werealso investigated in the presentstudy. POS psycho-oncologyservices, POI psycho-oncologyinstitutions

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tions to re-focus the discussion when necessary [31, 35].One or two observers (M.G. and/or U.K.) were also presentat the focus groups or individual interviews to take fieldnotes.

Focus groups and individual interviews were tape-recorded and transcribed. Immediately after the sessions,the moderator and observers wrote field notes and memos[9–12, 19–22, 27, 28, 34, 38, 39].

Data analysis

First, three of the authors (M.N., M.G., and U.K.)independently studied the transcripts, field notes, andmemos, extracting a thematic framework [32] associatedwith participants’ perspectives on barriers to using POS.Next, investigators met to identify primary and secondarythemes that emerged and discussed those related toutilization barriers. Third, a comprehensive thematic frame-work was applied to all data [32]. These three authorsreread the data and selected quotations illustrating thethemes. Fourth, they interpreted the data using thedocumentary method [6, 7]. This method obtains informa-tion from three stages of interpretation [7]: (1) formulatinginterpretation, aimed to reconstruct the participants’ ex-plicit knowledge (what is said); (2) reflecting interpretation,aimed to reconstruct orientation patterns within a focusgroup and assess their influence on how the topic isdiscussed, compared to other focus groups; and (3)comparative analysis of all cases, to identify significantsimilarities and differences [4, 5].

Four of the authors (H.G., H.P., A.V., and M.W.), whowere not involved in the research process yet wereexperienced in conducting and studying focus groups,independently reviewed the other three authors’ analysesand conclusions (M.N., M.G., and U.K.). This involvedcareful review of the transcripts, themes, and results to ensureaccurate formulation of conclusions from the focus group andindividual interview data. All disagreements over conclusionswere intensively discussed and adequately resolved.

Results

Complementary quotes providing evidence of our resultsand hypotheses are presented in ESM 1.

Patients’ and physicians’ information deficits about POIand POS

Patients’ information deficits about POI and POS

Many patients had insufficient knowledge about POSoffered by the POI. This included basic practical informa-

tion, such as location of POI, and details of courseenrollment, therapists, time, place, and cost of POS.Another problem was inconsistent information about thePOI and POS. One female user stated that such discrep-ancies confuse new patients. She described this as an“initial problem”, which “may scare-off some patients”.Two male physicians thought that few people knew aboutthe POI and suggested public relations activities to increasepublicity. A female physician stated:

It would be good to organize some advertising. Take aflyer into the rooms, now and again, and say: ‘Hey,did you know?’ or ‘Today, such and such an eventwill take place.’

A male user confirmed the physician’s observation oflack of awareness among new patients and proposed thatthe psycho-oncology therapists introduce themselves toeach new patient. However, two male non-users suggestedthat the nurses should give every new patient a brochure:“That way, it’s left up to the patients” (non-user, male).

An additional problem mentioned was that some patientsare unable to process information in a crisis, especially atthe initial diagnosis stage, and cannot fully absorb factsabout POS. A male non-user suggested: “... maybe you[psycho-oncologists] should reach out to patients a secondtime”, once they have had time to adjust to the newsituation.

Many patients did not understand the information aboutthe POI and POS. Possible reasons for this were derivedfrom the focus group data. First, the information providedby the POI on the Internet and in brochures was notsufficiently straightforward or concise for some patients.One female physician explained this problem:

Because this type of patient doesn’t know what itreally is, what we’re actually doing... when someonesimply explains what ‘The POI’1 is; what we do, sothat the patients are no longer intimidated by the ideaof going there, because very few patients learnanything from these newsletters. We must also alwaysconsider the different intelligence levels of patients;80% don’t even completely understand it. It would bemore appropriate to publish a two- or three-pagebrochure, explaining what we do, how we can maketheir lives easier, both inside and outside the clinic,and changing their perspective.

Second, nurses and physicians felt that many patients didnot understand the term psycho-oncology: A femalephysician said that she does not use this term whencommunicating with patients. Third, the POI uses terms

1 “The POI” replaces the name of the institution here, to ensureanonymity.

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such as “art therapy” rather than “painting”, which is tooabstract and removed from the layperson’s conception andenvironment. Hence, two male non-users were verysurprised to learn from the focus group’s moderator that“exercise therapy” is similar to sports. This was confirmedby a female physician:

Yes. That’s because the concept is too abstract; it’s nottangible enough. It is a distant notion...

Fourth, some patients could not comprehend how “arttherapy” or “dancing” could help them cope better withcancer:

I simply cannot imagine dancing or painting and howit could work, (non-user, male).

A male user also stated:

I was very surprised, because I never really thoughtthat painting could help me.

Physicians’ information deficits about POI and POS

All focus groups revealed that the hospital physicians andthose treating cancer outpatients were insufficiently in-formed about available POS in the POI. One female userreported asking physicians about psycho-oncology thera-pies, but they were unable to help her. Another user stressedthe fact that the physicians providing outpatient services areunaware of the POI, or they “... put the POI brochure in thedrawer”.

Many of the hospital physicians lacked a clear idea ofwhat psycho-oncology involves and of the evidenced-basedeffects of its services. One male physician stated:

I’m not sure if offering painting courses is reallypsycho-oncology.

Another male physician added:

They offer an incredibly wide array of paintingtherapy and conversational therapy... and they alsohave get-togethers, which, if I’m not mistaken, iscompletely different from what psycho-oncologydoes.

A female physician stated that both the term “psycho-oncology” and the information about the POI and POS aretoo abstract:

Whereas psycho-oncology is already a difficult termfor most patients… there are various definitions,which are unfamiliar to many people.

Furthermore, physicians participating in the focus groupsperceived psycho-oncology as merely psychological sup-port. Other treatments, such as art and music therapy, were

“merely occupational therapy” that do not genuinely helptheir patients but “just make them happy”.

Patients’ and physicians’ subjective norms regarding POS

Patients’ subjective norms

CPs’ desire for “normalcy” as a key subjective norm arosein nearly every focus group. One significant indication wasthe users’ and non-users’ repeated desire for shared cookingand dining areas for hospital patients, demonstrating theirneed for normal, familiar activities. Another indication wasthe desire expressed by male non-users to engage in privatehobbies at the POI, such as computers and soccer.Moreover, non-users felt that as illness receives evengreater focus at the POI, which is perceived as the antithesisof normalcy, they wished:

...not to see everything from the psychological andillness point of view (non-user, female)

Another sign of the desire for normalcy was theirreluctance to confront others’ illness and/or destiny for fearof becoming emotionally unstable.

A further subjective norm was rejecting “therapy” and/orthe “therapeutic viewpoint”. For example, patients oftenassociated therapy with disease and were afraid of beinglabeled as mentally ill. One female non-user expressed herdesire for:

... an invitation to spontaneous, fun activities, ratherthan therapies...” and “When I paint, I want to paint...paint and not interpret what was painted.

This rejection can be seen as a further indication ofpatients’ strong desire for normalcy. The prejudices againstthe “psycho-world” also represented a very strong subjec-tive norm that acted as a further barrier to using POS. Onefemale physician commented:

... many patients can’t handle the idea of mental orpsychological counseling, but somehow they’re okaywith religious or spiritual counseling, to the point thatthey turn to someone else and then somehow want tospeak to somebody like a clergyman…possibly a bitmore willing to open up when discussing theirproblems with a priest rather than a psychologist...because, many people still associate the terms‘psychologist’ or ‘psychological counseling’ withsomething negative.

A male non-user also described this “psycho-barrier”very clearly. He reported his experience in another hospitalwhere he felt dreadful after his initial cancer diagnosis. Anurse sent him a therapist, and he asked “...if she was goingto do some kind of psycho-treatment”. When the therapist

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said that she was “...coming as a human being...”, heagreed to talk to her.

Physicians’ subjective norms

One subjective norm of physicians and some nurses wasthat POS were not integral to routine oncology care. Onlyterminal patients undergoing a psychological crisis wouldbe referred to POS:

...we currently have a 30-year-old patient with lymphnode metastases... In such cases, that is, at the initialdiagnosis, I rarely include it... (physician, female)

Lack of integration of POI and POS into routine oncologycare

The external geographical location of the evaluated POIand lack of integration of psycho-oncologists in oncologyteams on the wards had organizational implications, whichapparently led to a number of utilization barriers. One resultof distress-screening absence and lack of routine psycho-oncology counseling for each new patient on everyoncology hospital ward was the physicians’ and nurses’subjective belief that POS were not integral to the health-care process. This means that POS were not associated withhospital norms and routine. The practice of recommendingpsycho-oncology therapists mainly in terminal, psycholog-ical crisis cases led to an inevitable outcome that CPsassociated the POI and POS with terminal illness and thehospice, rather than with normative healthcare, such aschemotherapy. Consequently, patients accepted POS onlywhen their condition deteriorated. Because the physiciansassociated POS referrals with severe conditions, a viciouscircle developed. Physicians’ tremendous authority overpatients turns them into crucial intermediaries between theirpatients and the POI. A female physician suggested thatmore frequent psycho-oncologist visits to the ward, andmore intensive feedback and networking between the POIand the physicians would mean that:

...it would be at the forefront of the physicians’minds, and they would draw patients’ attention to it.

An obvious solution to these integration problems wasintensively discussed in nearly every focus group. Theexistence of a special psycho-oncology room on the POI’sward would indicate its intrinsic connection to the oncologyhealthcare process. Hence, both patients and physicianswould perceive it as the norm. A physician described herpositive experiences with a former voluntary psychologist,who had a room on the ward:

We once had a volunteer, which was great.... Shealways came by, introduced herself to the patients,

and just talked a bit... each time... the same personcoming by... and I just thought that was great. I alsosaw... what she achieved. Often, she would conferwith us and share her views on what could possiblystill be done, or she would give us a few tips...(physician, female).

This quote exemplifies how psycho-oncologists’ regularpresence on the ward made their efforts and the effects ofPOS visible to the medical staff. Another advantagediscussed in the focus groups was that patients confinedto the ward (e.g., due to chemotherapy) could benefit fromPOS.

Specific characteristics of patients using POS

Specific characteristics of CPs, such as education level,conception of psychosocial topics, extroverted personalitytraits, advancement in coping, and female gender seemed tobe relevant preconditions for targeting patients for psycho-oncology information and therapies. Yet, CPs without thesecharacteristics encountered utilization barriers. A femalephysician indicated that these patients may need a certainimpetus:

...I would say that a third of the patients need a push...It’s obviously easier for patients who are open andcurious, who seek help from the very beginning, thanfor patients who are more withdrawn, more scared,and don’t have confidence to seek out ‘The POI’ ontheir own.

Nevertheless, the aforementioned characteristics were noguarantee of CPs’ easy access to POS:

That was also a little ambivalent. On the one hand,she was very open and proactive; on the other, shereally didn’t trust herself to ask, for example, if itcosts anything to continue with it, once I’m home(physician, female).

Discussion

Table 2 summarizes the key findings and practicalimplications of this explorative study, which can beinterpreted tentatively as a systemic model of interdepen-dent relationships. It can be hypothesized that organiza-tional and therapeutic integration of POS into routineoncology care on the ward (see Table 2, column 3) mayhave the greatest influence, in the long-term, on patients’and physicians’ subjective norms and information deficits.Simultaneously, patients’ and physicians’ subjective normsand information deficits have reciprocal influence (seeFig. 2). Therefore, full integration of POS into oncology

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Table 2 Key findings and implications for psycho-oncology practice

Key findings Implications Key implication

There was insufficient practicalinformation about how to getstarted with POS

Give more detailed and practice-orientedinformationCollect more data on patients’understanding of the meaning andvalue of POS and the information about it

Information did not reachevery new patient

Provide information via multiple channels(therapists, Internet, and brochures) andthe repetition of information

Not every patient understoodthe information provided aboutthe POS and how they worked

Use simple language rather thanpsychological language

Collect more data on patients’understanding of the meaning andvalue of POS and the information about it

Many physicians (providing in-and outpatient services) lackedsufficient information about POSand understood neither the realmeaning of psycho-oncology northe evidence-based effects ofpsycho-oncology care

Make an effort to educate physiciansproviding in- and outpatient servicesabout the meaning and effectivenessof psycho-oncology care

The desire for normalcy and therefusal of therapeutic andpsychological offers were thesubjective norms of manycancer patients

Develop more widely accessible POSby asking a broad range of cancerpatients what kind of support theywould appreciate

Organizational and therapeuticintegration into routine oncologycare on the ward

Identify target groups and inventtarget group-oriented POS

Avoid therapeutic and psychologicallabeling of POS and the psycho-oncologiststhemselves

The subjective norm of physicianswas that POS were not integral tooncology care

Psycho-oncology training should becomepart of the curriculum of all medicaloncologists. See IPOS-ESO onlinecurriculum http://www.ipos-society.org/professionals/meetings-ed/core-curriculum/core-curriculum-pres.htm

Many physicians and patients usePOS only in crisis situations

Psycho-oncology training should becomepart of the curriculum of all medicaloncologists. See IPOS-ESO online curriculumhttp://www.ipos-society.org/professionals/meetings-ed/core-curriculum/core-curriculum-pres.htm

Patients without higher education,with no conception of psychosocialtopics, introverted personality traits,not advanced in the (cancer) copingprocess, and not female were difficultto target for POS

Invent widely accessible POS by askinga broad range of cancer patients whatkind of support they would appreciateUse simple rather than psychological language

Identify target groups and invent targetgroup-oriented POS

Enable patients to make and remain incontact with POS via psycho-oncologists,physicians, nurses, and/or case managers

POS psycho-oncology services

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care on the ward should increase physicians’ and patients’acceptance of POS as a “normal”, integral part of thehealthcare process. Reducing the distance and inaccessibil-ity of POS [15] would make physicians and nursesimportant intermediaries between patients and POI, andlessen patients’ stigmatized perception of POS.

In addition, optimizing information dissemination andexchange between psycho-oncologists, physicians, andpatients may positively influence the physicians’ and patients’subjective norms. Moreover, patients with the characteristicsdescribed in Fig. 2 may be more easily targeted by POS. Inaddition, providing less practical, simple, multi-channel,and repetitive information in person, offering more widelyaccessible POS and avoiding therapeutic and psychologicallabeling of POS and psycho-oncologists (please see Table 2,implications) seem to be crucial for reducing stigma andenhancing participation in POS, particularly for thesepatients.

The present findings also indicate that these barriers mayresult in unequal opportunity. The POI should aim to ensure

that all patients, regardless of social status or environment,have accessibility to POS, understand the aims of this typeof help, and discover how to receive offers oriented to theirspecific needs and environment. Furthermore, it should benoted that the limited financial resources for POI and POSin Germany are also an obstacle to overcoming some of theidentified barriers.

Our findings are in line with the few studies thatinvestigated utilization barriers of POS. Holland [16, 17]and Redman et al. [33] also discovered that the integrationof POS into oncology care can play a major role inovercoming attitudinal barriers and stigma attached to POS.Further studies support our finding of specific character-istics of POS user CPs, whose perception is less stigmatized[e.g., 13, 25, 40]. Mehnert and Koch [24] interviewedinternational experts in psycho-oncology to compare theestablishment of psychosocial oncology around the world.They subsequently demonstrated a lack of knowledge aboutPOS in 37% of the countries analyzed, as well as the fear ofbeing labeled as having a psychiatric problem or unable to

Refusal to utilize

psycho-oncology

services

Information deficits

Insufficient information

Do not understand information

Subjective norm

Desire for “normalcy”

Refusal of psychological help(stigma)

POS are not an integral part ofoncology care process

Subjective norm

Insufficient information

Do not understand information

Information deficits

No routine counseling/screening,unless in psychological/physical crisis

Lack of organizational &therapeutic integration of POS intoroutine oncology care on the ward

POS is not “normal”

Patients do not perceive POS assomething normal (unless inpsychological/physical crisis)

Physicians

Cancer patients

Lower education level

No conception of psychosocial topics

No extroverted personality traits(e.g., shy, no openness)

Characteristics of cancer patients

Not advanced/experienced incoping process

Male patients

Fig. 2 Systemic model of barriers to using psycho-oncology services (POS). POI psycho-oncology institutions, POS psycho-oncology services

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cope with the disease. They also revealed that the majorityof psycho-oncology experts estimated that POS wereintegrated into CP medical treatment to an unsatisfactoryextent. However, they did not discuss the lack oforganizational integration of POI as a barrier.

To the best of our knowledge, this is the only qualitativestudy to investigate POS utilization barriers as a multi-causal problem with complex interdependencies. In light ofthis, we recommend future research to investigate thesystemic model of barriers to using POS (see Fig. 2) inother countries and to replicate and/or supplement thismodel with further qualitative studies and/or quantitativesurveys of patients and physician/nurses [41]. Because thepresent systemic model contains many elements of the“Theory of planned behavior” [1, 2] and of Anderson’s“Behavioral model of health services use” [3], the combi-nation of this model in further research could assist thedevelopment of a psycho-oncology utilization theory.

Strength and limitations

Certain elements of this study limit the generalization offindings. First, the study was not specifically designed tocollect and analyze data about barriers to using POS.Therefore, explicit questions about barriers were only a partof focus groups and interviews. Nevertheless, this weaknessis also its strength, as the qualitative approach providesopenings for unexpected findings.

Second, focus groups and interviews in this studysuffered from relatively low response rates and did notprovide a diverse representation of CPs and their caregiversin terms of cancer type, ethnicity, and socio-economicstatus. As expected, the response rate of non-users andusers’ relatives was fairly low, due to their lower motivationto participate in our study. Moreover, participants wereaffiliated with urban cancer-care units and may havedifferent perspectives than patients, family members, andproviders in rural areas. Furthermore, evaluating only onePOI limits the generalization of our results. Hence, futureresearch should aim to recruit a broader range of partic-ipants and POI.

Third, interviewing nurses and physicians together infocus groups led to nurses’ greater reserve and lowercontribution to the discussion. This may be due to therelatively strong hierarchical differences between nursesand physicians in Germany. Further research should holdseparate focus groups for nurses and physicians.

Fourth, self-selection bias was considered for focusgroups. Participants who agreed to participate in this studymay be more self-reflecting and engaged than others whodid not participate and whose perspectives were notrepresented in this study.

Conclusion

Alongside limitations, the key practical recommendationsfor POI arising from the study are integrating POS intoroutine oncology care on the ward, offering more widelyaccessible therapies and providing patients with concise,straightforward information via different media channels (e.g.,personnel, brochures, and Internet).

This study’s multidisciplinary perspective may provide adeeper understanding of the reasons for refusing POS, thusenabling the potential to improve our interaction with CP [22].

Acknowledgements We would like to thank the cancer patients,their relatives, and the physicians and nurses who participated in thisstudy for their support. We confirm that all patient/personal identifiershave been removed or changed to ensure anonymity.

Conflict of interest The authors indicated no potential conflict ofinterest.

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