Group rehabilitation for cancer patients: satisfaction and perceived benefits

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Patient Education and Counseling 40 (2000) 219–229 www.elsevier.com / locate / pateducou Group rehabilitation for cancer patients: satisfaction and perceived benefits a, a b b * Lena-Marie Petersson , Gunilla Berglund , Ola Brodin , Bengt Glimelius , a ¨´ Per-Olow Sjoden a Department of Public Health and Caring Sciences, Uppsala University, Uppsala Science Park, S-751 83 Uppsala, Sweden b Department of Oncology, Radiology and Clinical Immunology, University Hospital, Uppsala, Sweden Received 11 March 1999; received in revised form 16 September 1999; accepted 4 October 1999 Abstract Satisfaction with a group rehabilitation programme (GR) was evaluated in a heterogeneous group of cancer patients. Of the patients that were invited, 67% (N 5 132) participated in the GR. The GR included eight sessions plus one booster-session, each including information and / or cognitive–behavioural techniques combined with physical training and relaxation and started approximately 4 months after diagnosis. Men and women participated to the same extent. A mailed questionnaire was used to assess patients’ satisfaction, perceived benefits and level of difficulty of the GR components. The majority of patients stated that the number of sessions and timing of the GR was adequate. The usefulness of the GR components were rated in the following descending order: relaxation, physical training, encountering others in the same situation, breathing exercises, information and cognitive–behavioural skills. Patients were more satisfied with diagnosis- specific group meetings than with those including several diagnoses. Assessment of patient satisfaction seems appropriate to elucidate patient priorities. 2000 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Group rehabilitation; Cancer patients; Patients satisfaction; Cognitive–behavioural techniques; Physical training 1. Introduction improve the quality of life in cancer patients. Three meta-analyses of studies on such interventions with Since the late 1970s, research has demonstrated adult cancer patients have been conducted recently. that psychosocial interventions can be expected to Meyer and Mark [1] reviewed 45 randomised, con- trolled studies and concluded that psychosocial inter- ventions had positive effects on emotional and functional adjustments, and treatment- and disease- *Corresponding author. Tel.: 1 46-18-471-3508; fax: 1 46-18- related symptoms. Devine and Westlake [2] analysed 471-3490. 116 intervention studies and found that psychoeduca- E-mail address: [email protected] (L.-M. Peters- son) tional care was of benefit to adults with cancer with 0738-3991 / 00 / $ – see front matter 2000 Elsevier Science Ireland Ltd. All rights reserved. PII: S0738-3991(99)00102-0

Transcript of Group rehabilitation for cancer patients: satisfaction and perceived benefits

Page 1: Group rehabilitation for cancer patients: satisfaction and perceived benefits

Patient Education and Counseling 40 (2000) 219–229www.elsevier.com/ locate /pateducou

Group rehabilitation for cancer patients: satisfaction and perceivedbenefits

a , a b b*Lena-Marie Petersson , Gunilla Berglund , Ola Brodin , Bengt Glimelius ,a¨ ´Per-Olow Sjoden

aDepartment of Public Health and Caring Sciences, Uppsala University, Uppsala Science Park, S-751 83 Uppsala, SwedenbDepartment of Oncology, Radiology and Clinical Immunology, University Hospital, Uppsala, Sweden

Received 11 March 1999; received in revised form 16 September 1999; accepted 4 October 1999

Abstract

Satisfaction with a group rehabilitation programme (GR) was evaluated in a heterogeneous group of cancer patients. Ofthe patients that were invited, 67% (N 5 132) participated in the GR. The GR included eight sessions plus onebooster-session, each including information and/or cognitive–behavioural techniques combined with physical training andrelaxation and started approximately 4 months after diagnosis. Men and women participated to the same extent. A mailedquestionnaire was used to assess patients’ satisfaction, perceived benefits and level of difficulty of the GR components. Themajority of patients stated that the number of sessions and timing of the GR was adequate. The usefulness of the GRcomponents were rated in the following descending order: relaxation, physical training, encountering others in the samesituation, breathing exercises, information and cognitive–behavioural skills. Patients were more satisfied with diagnosis-specific group meetings than with those including several diagnoses. Assessment of patient satisfaction seems appropriate toelucidate patient priorities. 2000 Elsevier Science Ireland Ltd. All rights reserved.

Keywords: Group rehabilitation; Cancer patients; Patients satisfaction; Cognitive–behavioural techniques; Physical training

1. Introduction improve the quality of life in cancer patients. Threemeta-analyses of studies on such interventions with

Since the late 1970s, research has demonstrated adult cancer patients have been conducted recently.that psychosocial interventions can be expected to Meyer and Mark [1] reviewed 45 randomised, con-

trolled studies and concluded that psychosocial inter-ventions had positive effects on emotional andfunctional adjustments, and treatment- and disease-

*Corresponding author. Tel.: 1 46-18-471-3508; fax: 1 46-18-related symptoms. Devine and Westlake [2] analysed471-3490.116 intervention studies and found that psychoeduca-E-mail address: [email protected] (L.-M. Peters-

son) tional care was of benefit to adults with cancer with

0738-3991/00/$ – see front matter 2000 Elsevier Science Ireland Ltd. All rights reserved.PI I : S0738-3991( 99 )00102-0

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respect to anxiety, depression, mood, nausea, vomit- other patients in the same situation was rated as aing, pain and for improving their knowledge about most helpful component. When relaxation was in-cancer. Sheard and Maguire [3] analysed 19 trials for cluded as a programme component, this was rated asanxiety and 20 trials for depression and concluded most helpful [4–6]. Negative aspects of the groupthat preventive psychological interventions may have situation were too few participants [14], drop-outs ina moderate clinical effect upon anxiety but not the middle of the programme [12], too short sessionsdepression. In addition to these traditional outcome [11], conflicts among group members and groupmeasures, an evaluation of patient satisfaction with heterogeneity [13], and some patients found theand the perceived benefits of components of psycho- programme ‘‘scary’’ or ‘‘depressing’’ [10]. In severalsocial interventions is of interest. Patient satisfaction studies, the intervention as a whole was rated byis a desirable goal in itself when offering an inter- patients, while for example Telch and Telch [9]vention and should constitute a foundation for the investigated satisfaction with various aspects of thecontinous improvement of the intervention. Re- intervention, but reported only a brief conclusion. Insponses to general questions about satisfaction with two reports [10,13], participants were asked to pointcare are customarily positive and may miss important out what aspect of the programme they fond mostinformation [4], whereas questions on specific pro- helpful or of most interest. Heinrich and Schag [6]gramme components reveal greater variability [5,6]. reported that approximately 75% of the participantsMeasures of satisfaction are usually not included in found the relaxation exercises, education and in-standardised questionnaires for evaluating interven- formation and the experience of being in a group totions, in spite of the fact that satisfaction is an be very helpful, but only 50% rated activity manage-important determinant of patient compliance [7,8]. ment and problem solving as very helpful. Watson

A review of the available literature revealed that [5] found that relaxation, discussions about treat-few studies of group interventions for cancer patients ments and handouts were rated as most helpful,have evaluated patient satisfaction. Nine studies were whereas the least helpful was a psychological journalidentified. Among these, two were cognitive–be- or diary to aid learning and to facilitate reflection.havioural programs [4,5], one concerned coping In general, patients stated that they were satisfiedskills training (containing cognitive–behavioural ele- with the evaluated interventions when asked to givements) [9], four concerned education [6,10–12], two an overall assessment. However, they expresseddealt with support groups [12,13] and one was different levels of satisfaction when asked about theconcerned with an information programme [14]. various components of the intervention given.Only three were randomised studies [6,9,14], and the The present study concerns patients’ opinions of aremainder were pilot studies or reports of ongoing group rehabilitation (GR) programme, includingprograms. Most interventions consisted of 6–10 cognitive–behavioural techniques, information, re-sessions, one of a single group meeting [14], one of a laxation and physical training, which was offered as10-month intervention for newly diagnosed patients, one of several interventions in a randomised study.and a 1-week program for patients 1 year after The aims are to describe patients’ self-reportedtreatment [12]. Bottomley [4], Hammerlid et al. [12] degree of satisfaction with the GR, perceived bene-and Heinrich and Schag [6] used interviews for data fits and perceived difficulty of the employed GRcollection, while the rest used questionnaires. Some techniques. Participation rates, satisfaction, perceivedstudies had small sample sizes of 6–14 patients benefit and perceived difficulty of the GR techniques[4,5,12]. The largest sample consisted of 114 patients were compared between diagnoses, genders, agewho completed a questionnaire [14]. Thus, there was groups and between groups of patients offered onlyconsiderable variation between studies with respect GR and those offered a combination of GR 1

to interventions as well as evaluation methodology. individual support (IS). The latter comparison wasIn spite of this, the overall conclusion was that the included to elucidate the extent to which the IS,

majority of patients were highly satisfied with the including early individual psychological support,intervention. In all studies, the opportunity to meet affected the need for later group rehabilitation.

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2. Methods of the distribution of patients among diagnosticgroups and reasons for declining participation.

2.1. Patients and procedures The aims of the GR and IS interventions were tolessen psychosocial problems at the time of cancer

Between October 1st, 1993 and December 31st, diagnosis and initial treatment, and to prevent later1995, a consecutive series of patients that had been psychosocial problems at rehabilitation. The IS con-newly diagnosed ( , 3 months) with breast, gastroin- sisted of problem-focused individual psychologicaltestinal (colorectal, gastric) or prostate cancer and support, intensified primary care, and for patientspatients who were under medical investigation for a with gastrointestinal cancer, dietician support. Itsuspected breast cancer in Uppsala county (289 000 started as early as possible after diagnosis and variedinhabitants) were approached by the ‘‘Support– in accordance with patients needs. See Hellbom et al.Care–Rehabilitation’’-project. A research nurse in- [8], and Johansson et al. (in press) for more detailedformed them about the project, both orally and in descriptions. The GR will be described in detailwriting, as soon as possible after they had been below.informed about their diagnosis. Of the available The present study is based on the data only frompatients, 73% (N 5 527) accepted participation and those 132 patients (GR N 5 68, GR 1 IS N 5 64)were randomised to one of four alternatives: group who participated in the GR programme. Of therehabilitation (GR), individual support (IS), the original 221 patients randomised to GR or thecombination of GR 1 IS or standard care (Fig. 1). combination of IS 1 GR, 24 had decided to dis-See Hellbom et al. [8] for a more detailed description continue participation in the research project before

Fig. 1. Design of the ‘‘Support–Care–Rehabilitation’’-project.

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the time of invitation and one patient had died. Of 106) declined GR participation as compared to2those who discontinued participation, 13 were ran- patients randomised to GR only (22/90) (x 5 5.10;

domised to GR and 11 to the combination of IS 1 df 5 1; P , 0.05). Of those 129 patients who lived inGR. Reasons for discontinued participation were: the Uppsala municipality, 98 (76%) participated in‘‘don’t want to continue / regret participation’’ (N 5 the GR compared to 34/67 (51%) of those living

212), ‘‘too many/difficult questions’’ (N 5 4), ‘‘too outside the municipality (x 5 12.76; df 5 1; P ,

tired’’ (N 5 4), ‘‘moved from county’’ (N 5 3) and 0.001).‘‘don’t believe I have cancer’’ (N 5 1). A total of 71 (54%) of participants in the GR had

A total of 196 patients were invited to the GR and breast cancer, 25 (19%) gastrointestinal cancer (N 5

132 (67%) accepted participation. Demographic data 22 colorectal cancer, N 5 3 gastric cancer) and 36are presented in Table 1. A significantly larger (27%) prostate cancer. Eighty (61%) were womenproportion of patients randomised to IS 1 GR (42/ and 52 (39%) were men. Reasons for not participat-

Table 1Characteristics at inclusion of patients invited to and those participating in group rehabilitation

Participants Declined participation Total

N (%) N (%) N (%)

SexMen 52 (39) 27 (42) 79 (40)Women 80 (61) 37 (58) 117 (60)

Cancer diagnosisBreast 71 (54) 30 (47) 101 (52)

aGastrointestinal 25 (19) 19 (30) 44 (22)Prostate 36 (27) 15 (23) 51 (26)

Marital status*Married /cohabitant 92 (70) 46 (72) 138 (70)Single /divorced 28 (21) 5 (8) 33 (17)Widow/widower 12 (9) 13 (20) 25 (13)

Income (per year), 70 000–150 000 SeK 35 (26) 22 (34) 57 (29)150 000–280 000 SeK 43 (33) 21 (33) 64 (33). 280 000 SeK 43 (33) 15 (23) 58 (30)No answer 11 (8) 6 (9) 17 (9)

Education*Elementary school 50 (38) 35 (55) 85 (43)Grammar /Junior secondary school 36 (27) 16 (25) 52 (26)College /university 41 (31) 11 (17) 52 (26)Other 5 (4) 2 (3) 7 (4)

Age (years), 65 66 (50) 25 (39) 91 (46)$ 65 66 (50) 39 (61) 105 (54)

Municipality**Uppsala 98 (74) 31 (48) 129 (66)Outside 34 (26) 33 (52) 67 (34)

a Colorectal plus gastric cancer.*P , 0.05, **P , 0.001.

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ing among the 64 patients (33%) were: ‘‘no need/ latter is an individual form of treatment, whereas GRdon’t want to’’ (N 5 31), ‘‘too far to travel’’ (N 5 is a group model developed on the basis of ex-13), ‘‘no time due to work’’ (N 5 9), ‘‘too ill /old’’ periences from the ‘‘Starting again’’-programme at(N 5 6), other disease (N 5 3) and ongoing indi- Radiumhemmet, Karolinska Hospital in Stockholmvidual contact with psychologist (N 5 2). Patients [16].who accepted participation were younger (mean The intervention was designed to start approxi-age 5 62.4, S.D. 5 12.8), than those who declined mately 3 months after diagnosis. Patients randomisedparticipation (mean age 5 67.1, S.D. 5 13.0) (t 5 to the combination of IS 1 GR had to complete their2.44, df 5 194, P , 0.05) (Table 2). When the diag- individual psychological support before participatingnoses were tested separately, age differed signifi- in the GR. However, the intensified primary care andcantly only in the case of breast cancer, where the the dietician contacts which also formed parts of themean age of participants was 55.9 (S.D. 5 12.3) IS were continued when needed. Three weeks beforecompared to 63.3 years (S.D. 5 15.0) for those who the GR started, an invitation letter was mailed todeclined participation (t 5 2.60; df 5 99; P , 0.05). patients. A few days later, the group leader phoned

A total of 21 groups were conducted. Each group each patient to confirm or disconfirm attendance. Ifconsisted of 3–9 patients (mean 5 6.3, S.D. 5 1.5). there were travel problems or other practical prob-The patients were in different phases of their treat- lems in association with participation, attempts werement. Some were only treated surgically, some had made to solve these.adjuvant or curative treatment (radiation, chemo- The GR comprised of eight weekly sessions andtherapy, hormonal therapy) and others had finished one booster session after 2 months. The 2.5-htreatment and attended regular follow-up visits. meetings consisted of two parts, one includingMean time between inclusion and GR start was 4.4 information or CBT and one consisting of lightmonths (median 5 4, range 5 1–12, S.D. 5 1.8). physical training and relaxation. One of the informa-

The ‘‘Support–Care–Rehabilitation’’-project was tive sessions was dedicated to disease and treatmentapproved by the Research Ethics committee at the and one to dietetic issues. These were conducted byFaculty of Medicine, Uppsala University. an oncologist or a surgeon and a dietician, respec-

tively. The CBT was led by a psychologist and2.2. Group rehabilitation program included techniques for handling anxiety, problem

solving, discovering and challenging automatic nega-The overall goal of the GR was to improve tive thoughts, activity planning and distraction. Dur-

patients’ ability to cope with problems occasioned by ing all sessions, there were opportunities for patientsdisease and treatment, to improve their quality of life to discuss their concerns. The physical training wasand to prevent later psychosocial problems. led by a physiotherapist and comprised techniques

The GR was based on the principles of cognitive– for relaxation, breathing techniques and a physicalbehavioural therapy (CBT). In this respect, it resem- activation program adjusted to the abilities of thebles Adjuvant Psycho Therapy [15]. However, the members in each group. An oncology nurse acted as

Table 2Number and age of patients in each diagnostic group participating or declining participation in group rehabilitation

Cancer Participants Declining participantsdiagnosis

N (%) Mean age S.D. Range N (%) Mean age S.D. Range

Breast 71 (54) 55.9 12.3 32–87 30 (47) 63.3* 15.0 37–87aGastrointestinal 25 (19) 68.1 10.7 45–87 19 (30) 67.8 11.2 50–85

Prostate 36 (27) 71.3 6.2 57–85 15 (23) 74.0 6.7 59–84Total 132 (100) 62.4 12.8 32–87 64 (100) 67.1* 13.0 37–87

a Colorectal plus gastric cancer.*P , 0.05

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a co-leader at each meeting. A coffee break made difficult’’ 5 3) with respect to nine of the aboveinformal talk possible. Confidentiality rules were set mentioned areas. Some topics were considered in-at the first meeting. appropriate for the difficulty rating and were there-

Patients were given written information in advance fore excluded, i.e. ‘‘Meeting other patients in theconcerning the content of each session to facilitate same situation’’, ‘‘Giving others support and help’’learning. In order to encourage application of CBT and ‘‘Getting support and help from other patients’’.and physical training techniques in daily life, written One question concerned patients’ view of the GRassignments were given at every session, one for the group composition.CBT and one for the physical training, e.g., to record Two weeks after GR termination (i.e. after 8automatic negative thoughts and challenge them and sessions), the questionnaire was mailed to the par-to perform daily relaxation exercises. ticipants (N 5 132) by a person in the research group

who was not associated with the rehabilitation2.3. Data collection programme. A reminder was sent to all patients after

two weeks.2.3.1. Background data

Gender, age, diagnosis, education, marital status, 2.4. Statistical analysisincome and living area were collected at inclusion.Attendance was recorded for each group. Unpaired t-tests [17] were used for between-group

comparisons of means on continuous variables, and2.3.2. Questionnaire nonparametric statistics for remaining comparisons

A 30-item questionnaire was developed for the [18]. Mann–Whitney U-test and the Kruskal–Wallisassessment of patients’ participation in and satisfac- one-way analysis of variance by ranks were used fortion with the GR and the perceived benefits of the category variables. Contingency tables were ex-GR components. Patients were asked to rate the amined by the Chi-square test [18].adequacy of the number of sessions, the appro-priateness of the time for starting the GR, the extentof the fulfilment of their expectations and whether 3. Resultsthey would recommend the GR to a close friend in asimilar situation. They were also asked if they would Patients’ compliance with the programme washave appreciated the presence of a significant other high. A total of 105 patients ( ¯ 80%) participated inin the group and if there should have been a similar five or more sessions, 17 (13%) in 2–4 sessions andbut separate group for significant others, or if a 10 ( ¯ 8%) participated in only one session. Thepatient intervention was enough. correlation between the number of self-reported

Patients were asked to rate the perceived benefit of sessions attended and those recorded by the groupthe GR on a four-step scale (‘‘None at all’’ 5 0, leaders was 0.89. There were no statistically signifi-‘‘Little’’ 5 1, ‘‘Rather much’’ 5 2, ‘‘Very much’’ 5 cant differences between the diagnostic, gender, age3) with respect to 12 areas: ‘‘Challenging negative or randomisation groups with respect to number ofthoughts’’, ‘‘Distraction techniques’’, ‘‘Daily activity attended sessions.planning’’, ‘‘Problem solving’’, ‘‘Meeting other pa- The questionnaire concerning patient satisfactiontients in the same situation’’, ‘‘Giving others support and perceived benefit was completed by 111 (84%)and help’’, ‘‘Getting support and help from other of the patients. Of these, 60 (54%) had breast cancer,patients’’, ‘‘Physical activity’’, ‘‘Relaxation’’, 22 (20%) had gastrointestinal cancer (N 5 19‘‘Breathing exercises’’, ‘‘Information by the dieti- colorectal, N 5 3 gastric) and 29 (26%) had prostatecian’’ and ‘‘Information by the physician’’. In addi- cancer. Sixty-eight (61%) were women and 43tion, they were asked to rate the perceived degree of (39%) men. Of the 21 patients (16%) who did notdifficulty in understanding the different parts of the complete the questionnaire, 19 had been present atGR components on a four-step scale (‘‘Very easy’’ 5 only 1–3 sessions due to ‘‘treatment or other dis-0, ‘‘Rather easy’’ 5 1, ‘‘Rather difficult’’ 5 2, ‘‘Very ease’’ (N 5 8), ‘‘didn’t have the time’’ (N 5 4),

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‘‘didn’t want to’’ (N 5 4) and ‘‘IS was enough’’ 1138; P , 0.05) would have preferred an earlier(N 5 3). There were no differences either between start. There were no differences between the ran-GR and IS 1 GR or between gender, age or diagnos- domisation groups. Two patients did not answer thistic groups with respect to the number of patients question.completing the questionnaire.

3.2. Perceived benefit of GR3.1. Number of sessions and GR timing

Data illustrating patient ratings of perceived bene-Most patients (75%) were satisfied with the num- fit of the GR are shown in Table 3. Relaxation,

ber of sessions. However, 23 (21%) did not consider physical training, encountering others in the samethe number of sessions to be enough. There was a situation, breathing exercises and the informativesignificantly larger proportion of patients randomised parts (physician, dietician) were experienced as theto GR alone (19/55) than to IS 1 GR (4/54) (U 5 most beneficial. Women perceived more benefit of1096; P , 0.05) who wanted more sessions. Of these relaxation than did the men (U 5 1125; P , 0.05).23, 15 were patients with breast cancer, 4 with Patients with breast or prostate cancer perceivedgastrointestinal cancer and 4 with prostate cancer. more benefit than patients with gastrointestinal can-Four patients (two with breast cancer and two with cer of meeting others in the same situation (H 5

gastrointestinal cancer) thought that there were too 7.00; df 5 2; P , 0.05), of physical training (H 5

many sessions. There were no differences between 8.14; df 5 2; P , 0.05) and of information by thegender, age or diagnostic groups. Two patients did physician (H 5 6.36; df 5 2; P , 0.05). There werenot complete this question. no differences between age groups or between

The the start of the GR was thought to be groups of patients offered only GR and those offeredappropriately timed by 84 (77%) patients, but 20 IS 1 GR.(18%) wished an earlier start. Of these 20, 17 hadbreast cancer, 2 gastrointestinal and 1 prostate cancer 3.3. Perceived difficulty of the GR components(H 5 8.94; df 5 2; P , 0.05). A significantly largerproportion of women (17/67) than men (3/42) (U 5 Ratings of perceived difficulty of the GR com-1114.5; P , 0.05) and more younger patients (16 / ponents are shown in Table 4. Most components53 , 65 years) than older (4 /56 $ 65 years) (U 5 were rated as ‘‘Very easy’’ or ‘‘Rather easy’’.

Table 3Patient ratings of perceived benefit of components of the group rehabilitation programme

Perceived benefit

None Some Rather much Much

N (%) N (%) N (%) N (%)

Challenging negative thoughts (N 5 109) 10 (9) 30 (28) 49 (45) 20 (18)Distraction (N 5 108) 14 (13) 33 (31) 48 (44) 13 (12)Daily planning (N 5 109) 19 (17) 37 (34) 39 (36) 14 (13)Problem solving (N 5 108) 13 (12) 28 (26) 49 (45) 18 (17)Physical training (N 5 110) 3 (3) 9 (8) 38 (35) 60 (55)Relaxation (N 5 110) 3 (3) 9 (8) 25 (23) 73 (66)Breathing exercises (N 5 108) 5 (5) 13 (12) 31 (29) 59 (55)Dietetic information (N 5 96) 5 (5) 19 (20) 44 (46) 28 (29)Medical information (N 5 103) 4 (4) 18 (17) 35 (34) 46 (45)Encounting others in the same situation (N 5 110) 3 (3) 13 (12) 35 (32) 59 (54)

aGiving others support and help (N 5 93) 10 (11) 34 (37) 30 (32) 19 (20)aGetting support and help from others (N 5 94) 10 (11) 30 (32) 32 (34) 22 (23)

a These questions were added after four groups.

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Table 4Patient ratings of perceived difficulty of the components of the group rehabilitation programme

Perceived difficulty

Very easy Rather easy Rather difficult Very difficult

N (%) N (%) N (%) N (%)

Challenging negative thoughts (N 5 107) 13 (12) 57 (53) 32 (30) 5 (5)Distraction (N 5 105) 15 (14) 62 (59) 25 (24) 3 (3)Daily planning (N 5 105) 27 (26) 62 (59) 13 (12) 3 (3)Problem solving (N 5 103) 13 (13) 56 (54) 29 (28) 5 (5)Physical training (N 5 110) 41 (37) 58 (53) 7 (6) 4 (4)Relaxation (N 5 111) 34 (31) 62 (56) 10 (9) 5 (4)Breathing exercises (N 5 110) 37 (34) 62 (56) 8 (7) 3 (3)Dietetic information (N 5 95) 32 (34) 55 (58) 5 (5) 3 (3)Medical information (N 5 103) 25 (24) 65 (63) 9 (9) 4 (4)

However, 27–35% perceived three types of coping gastrointestinal cancer would probably not recom-skills (challenging automatic negative thoughts, dis- mend GR to a friend (H 5 9.69; df 5 2; P , 0.01).traction and problem solving) as ‘‘Rather difficult’’ More patients randomised to GR alone would recom-or ‘‘Very difficult’’. There were no differences mend GR to a friend (53/57) than those who hadbetween gender or age groups or between groups of been offered the combination of IS 1 GR (43/54)patients offered only GR and those offered IS 1 GR. (U 5 1340.5; P , 0.05). There were no gender or ageEight (31%) of the prostate patients, five (9%) of the differences. No patient answered that he /she wouldbreast cancer patients but none of the gastrointestinal absolutely not recommend GR.patients perceived the information by the physicianas ‘‘Rather difficult’’ or ‘‘Very difficult’’ (H 5 9.84; 3.6. Significant others present or notdf 5 2; P , 0.01).

Eighty-nine (81%) of the patients did not want a3.4. Expectations for the GR significant other to be present at the GR sessions.

There was a significantly larger proportion of menForty-eight patients (44%) thought that their ex- (14/42) than women (7 /68) who would have liked

2pectations for the GR were fulfilled completely or to to have a significant other present (x 5 8.92; df 5

a large extent. Older patients were significantly more 1; P , 0.01). As a consequence, there were also2satisfied than younger patients (U 5 1054; P , 0.01), differences between diagnostic groups (x 5 7.25;

and prostate patients were more satisfied than re- df 5 2; P , 0.05). There were no differences be-maining diagnoses (H 5 9.91; df 5 2; P , 0.01). tween age or randomisation groups.Although there were no significant differences be- After completion of the four rehabilitation groups,tween randomisation groups, only patients random- one question was added to the questionnaire. Thisised to GR reported that their expectations complete- concerned whether patients would have liked aly fulfilled (7 /57) compared to IS 1 GR (0/53). specific intervention for significant others. Forty-There were no gender differences. Thirty-four pa- seven patients (51%) answered ‘‘yes’’ and the re-tients (31%) had no expectations. One patient did not maining ‘‘no’’. There were no differences betweenanswer this question. diagnostic, gender, age or randomisation groups.

3.5. Recommendation of GR 3.7. GR group composition

Ninety-six of the patients (86%) would and 11 A total of 78 (70%) of the patients completed thepatients (10%) would maybe recommend GR to a question about group composition. Of these, 48friend in the same situation. Four patients with (62%) stated that they found the group composition

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to be adequate, 12 (15%) had no comments, 12 (5%) months after inclusion. The most commonly em-had liked the group to be more homogenous (e.g., ployed periods for psychosocial interventions arediagnoses, gender, treatment), and six (8%) had immediately after diagnosis or when metastaseswanted more group members. occur [21]. We expected patients who received IS 1

GR to find the time point appropriate and the GR3.8. Individual psychological support and GR patients to find it too late. However, only 18% of theparticipation GR group held that opinion. The fact that some

patients who received both IS and GR found the GRPatients who received ‘‘more individual psycho- start to be too late raises further questions. It may

logical support’’ ( $ 3 sessions) [8] participated to a indicate that there is a small proportion of patientslarger extent in the GR (39/55) than did patients perceiving themselves as in need of several earlywho received ‘‘less psychological support’’ (1–2 interventions.

2sessions) (23/46) (x 5 4.62; df 5 1; P , 0.05). The physical components of the GR were the mostFive patients randomised to the combination of IS 1 appreciated. Almost all patients (95–97%) perceivedGR did not attend the individual psychological them to be beneficial. The results indicate thatsupport. Of these, one declined individual psycholog- physical training for cancer patients in heterogeneousical support but participated in GR, one was missed groups, with respect to ongoing or terminated treat-in individual psychological support but participated ment, diagnoses, stage of disease, age, etc. is feasiblein GR and three declined both individual psychologi- and certainly appreciated. Opportunities for appro-cal support 1 GR. priate physical exercises for somatically ill patients

are difficult to find in the community. To attendpublic training centres may be too big a step for

4. Discussion newly diagnosed cancer patients. It seems importantfor cancer patients to be permitted to take a brake

The results suggest that a substantial proportion of during the training session and to perceive them-cancer patients experience benefits by participating selves as not being deviant with respect to bodilyin group rehabilitation. Men and women attended to disfigurations. Relaxation and breathing exercisesthe same extent, although the proportion of patients were experienced as very useful. Possibly, the appli-accepting inclusion was somewhat higher among cation of home assignments increased patients’ abili-women. When patients were informed about the GR ty to use this knowledge in everyday situations.at inclusion, the educational aspects were stressed. The opportunity to share one’s experiences withThis may have been attractive to men [19,20], others and to realise that there are others goingexplaining their relatively high participation rate through the same difficulties was appreciated by[16]. many patients. This has also been demonstrated in

The GR programme was a short-term intervention. earlier research (i.e. [4,5,13]). In some groups,Most patients were satisfied with the number of members exchanged telephone numbers and stayedsessions. Of those desiring more sessions, the majori- in contact after the GR termination. The numbers ofty were younger women with breast cancer who had breast and prostate cancer patients were enough tobeen offered only GR, not the combination of IS 1 form specific diagnostic groups, and these patientsGR. were more satisfied with group composition than

An important question in cancer rehabilitation patients with gastrointestinal cancer who had toconcerns the appropriate timing of the rehabilitation attend groups of patients mainly with other diag-efforts. Only 20 patients (18%) (most with breast noses. Group heterogeneity was also a complaint incancer) participating in the GR perceived the GR the study by Cella et al. [13].start at 3–4 months after diagnosis as too late. This About 95% of the patients stated that they madefact was independent of whether patients had been use of the information provided by the doctor and theoffered IS before the GR or not. Sixteen of the 20 dietician. The GR emphasised both general infor-patients (80%) had participated in the GR 3–5 mation and more informal discussions about topics

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228 L.-M. Petersson et al. / Patient Education and Counseling 40 (2000) 219 –229

of current interest, mostly related to disease and participated in meetings, while women with breasttreatment. Recently, hospital stays in Sweden have cancer preferred meetings to be limited to those withbecome shorter [22]. Patients in the GR stated they the disease.felt that staff at the hospital were too busy and had Patients who were offered the combination oflittle time to talk. Many patients discussed their IS 1 GR had a lower GR participation rate than thoseunwillingness to disturb the staff with questions, offered GR only, but it was still fairly high. Patientsespecially doctors they had not met before. who had only one or two sessions of individual

Between 83 and 91% of the patients rated different psychological support had fewer problems than thoseparts of the CBT as at least somewhat beneficial. who had three or more sessions [8]. This finding isHowever, the physical and informative components consistent with the notion that patients with morewere the most appreciated. This is not surprising problems also chose to participate in another inter-since information and physical training could be vention, the GR. Those who were offered IS 1 GRassumed to be of benefit for most patients, and CBT declined GR participation to a higher degree thanonly so for the minority experiencing some degree of those offered GR, only if they had less than threeaffective and anxiety symptoms [23,24]. individual psychological support sessions. This sug-

Most patients found the components of the GR gests that they had less need for the intervention oreasy to understand and perceived them to be of that their problems were handled during the in-benefit in their daily life. Some parts of the CBT dividual psychological support sessions.were perceived as ‘‘Rather difficult’’ or ‘‘Very When asked why they declined participation in thedifficult’’ for some patients. The time available for GR or would not continue, patients reported difficul-teaching challenging automatic negative thoughts ties in making the time commitment or that they hadwas very limited, and to learn these techniques enough support elsewhere. This has also been dem-usually requires several sessions [15]. onstrated in previous studies [25,26]. The GR started

There were some patients with prostate cancer approximately 4 months after diagnosis, at a timewho perceived the physician information as difficult. when the medical treatments were completed forOne explanation may be that this information was most patients and some patients were back at work.not as standardised as that about breast and gastroin- Possibly, more of the younger patients would havetestinal cancer. The GR groups sometimes included attended if the GR had been offered in evenings or asprostate cancer patients with different treatments, a week-end course. Cunningham [27] has recentlye.g., due to different stages of the disease. For some shown that a ‘‘weekend intensive’’ programme,prostate cancer patients, it became obvious that their offering the same intervention as meeting weekly forillness was more severe than they thought and that it 7 weeks, produced comparable improvements inwas uncertain what medical treatment would be the mood and quality of life.best. The aims of the present paper were to describe

The fact that patient satisfaction differed between patients’ self-reported satisfaction with the GR pro-parts of the program (higher satisfaction with phys- gramme, perceived benefits of the GR and theical training and information than with CBT) sug- perceived difficulty of the GR components. Furthergests that the satisfaction ratings are not strongly analyses based on standardised measures of qualityaffected by social desirability. In order to minimise of life, anxiety and depression, coping-styles and rolethe influence of social desirability, a person not and physical functioning, for example, for theseassociated with the GR was chosen as the sender and patients will give a more complete view of thereceiver of the completed satisfaction questionnaire. usefulness of the GR programme.Patients’ high satisfaction ratings were confirmed bypatients’ spontaneous expressions of their apprecia-tion of the GR. 5. Implications for practice

More men than women would have liked to have asignificant other present during the GR. Gray et al. A short-time intervention like the GR seems[20] reported men in self-help groups to speak about suitable for a large group of cancer patients. Com-prostate cancer as a ‘‘family affair’’ and spouses pliance was high and most patients found 4 months

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L.-M. Petersson et al. / Patient Education and Counseling 40 (2000) 219 –229 229

programs by registered participants. Cancer Nursafter diagnosis to be an appropriate time for start.1988;11:274–82.The program was considered generally useful. The

[11] Gregoire I, Kalogeropoulos D, Corcos J. The effectiveness ofusefulness of the program components were rated in a professionally led support group for men with prostatethe following descending order: relaxation, physical cancer. Urol Nurs 1997;17:58–66.training, encountering others in the same situation, [12] Hammerlid E, Persson LO, Sullivan M, Westin T. Quality-of-

life effects of psychosocial intervention in patients with headbreathing exercises, information and CBT. The re-and neck cancer. Otolaryngol Head Neck Surgsults indicate that GR programmes should be dif-1999;120:507–16.

ferentiated for specific diagnostic groups. [13] Cella DF, Sarafian B, Snider PR, Yellen SB, Winicour P.The GR seems feasible at least for the major Evaluation of a community-based cancer support group.

diagnoses of breast and prostate cancer. Psycho-oncology 1993;2:123–32.[14] Brandberg Y, Bergenmar M, Michelson H, Mansson-Brahme

¨ ´E, Sjoden PO. Six-month follow-up of effects of an in-formation programme for patients with malignant melanoma.

Acknowledgements Patient Educ Couns 1996;28:201–8.[15] Moorey S, Greer S. Psychological therapy for patients with

This research was made possible by a grant from cancer: a new approach, Oxford: Heinemann Medical Books,1989.the Swedish Cancer Society.

¨ ´[16] Berglund G, Bolund C, Gustafsson U-L, Sjoden P-O. Arandomized study of a rehabilitation program for cancerpatients: the ‘‘Starting Again’’ group. Psycho-Oncology

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