Empowering employees with chronic diseases: process evaluation of an intervention aimed at job retention

Participants were recruited for the training programme and study from late spring 2006 to January 2008. Participants were recruited via outpatient clinics, occupational health services, patient organizations, companies and so on. Presentations were given to patient organizations, doctors, nurses and social workers in outpatient clinics, professionals at occupational health centres and to a national conference on chronic diseases. In addition, mailings were sent to several large companies and one patient organization sent a recruitment mailing to their members. Advertisements were published in patient organization magazines, electronic newsletters and/or websites, in staff magazines at large companies and in magazines from an occupational health centre. About 3,500 paper leaflets were distributed via outpatient clinics, an occupational health centre and a patient information centre. A digital leaflet was available on several websites. It is difficult to assess the relative success of the various recruitment strategies, as we had no reports of the actions of medical professionals after hearing our presentations or reading about the project. Advertisements in patient organization magazines and/or electronic newsletters were successful. Presentations at outpatient clinics were seldom successful; when they were, it was due to interested nurses who advised patients to contact us. Contacts with occupational health services were moderately successful. Contacts with companies were successful if they paid attention to the project in the staff magazine. Table 2 presents figures on the sources of information about the project that the participants encountered (control group included). Recruitment took considerably more time than expected; we estimate roughly that it took 8–10 months of full-time effort for one person to complete. These efforts netted 122 of the planned 128 participants. One of the reasons for recruitment problems, according to some professionals of outpatient clinics and occupational health services, was that these professionals felt restrained from referring persons to the project because of the possibility of randomization to the control group (personal communications to IV). Another possible reason was that occupational physicians were afraid to ‘lose’ patients when they referred them to the training programme (personal communication to FvD).

The personal, work and medical characteristics of the participants of the programme are presented in Table 3. Mean age was 46 years, most participants were women, and highly educated people were over-represented. Mean disease duration was 10 years and almost half had more than one chronic disease. Musculoskeletal, digestive and neurological disorders comprised about three-quarters of the group. Fourteen per cent had categories of diseases, such as renal failure, poor eyesight, HIV and chronic fatigue syndrome. The great majority of the participants worked in the commercial or non-commercial service sector, for 30 h weekly, on average.

From November 2006 to March 2008, eight training courses took place, including three trainers and 64 participants in total. Two of the trainers gave three courses each and the third gave two courses. Three participants withdrew halfway, one due to medical treatment that interfered and two because they were not satisfied with the programme. There were 56 group sessions in total. Overall, there were 55 missed sessions, but in the majority of cases, participants called to say they were unable to attend. The reason most mentioned was illness. Three individual consultations took place with all participants who finished the programme. Forty-eight per cent participated in the training programme during working hours, 31% used days off and 20% combined these.

Generally, all the planned components of the sessions were discussed, although some only briefly because of lack of time. One trainer mentioned that explaining the model ‘Quality of work,’ which emphasizes energizing and fatiguing or distressing factors, took too much time. Another trainer observed that the participants preferred to have time to exchange experiences with each other rather than listen to theoretical explanations, which they felt they could read in the course book. When discussing homework, it was often not possible to discuss each participant’s work. When discussing work-related problems in the group using the ‘Quality of work’ model, only one instead of the planned two participants was often discussed. It was often impossible to have all participants practice role-playing in one session. One of the reasons was that discussing role-playing afterwards took a lot of time.

According to the trainers, participants had rarely cognitive difficulties with understanding the various components of the training. One thing that some people found difficult to grasp was reflection on their work in terms of subjective perceptions instead of objective facts. Slight or more severe emotional difficulties were met when discussing the consequences of having a chronic disease, feelings and thoughts on having a chronic disease and practical matters. Participation in the groups by individuals was usually high. The session components’ aims were almost always ‘fairly’ or ‘completely’ achieved. Homework was generally completed by participants. One homework exercise presented difficulties for several participants; they were asked twice in the course of the programme to arrange a consultation with their supervisor. The first session was intended to be a discussion of how the supervisor judged their work performance, the second to discuss work-related problems and solutions. This exercise encountered resistance. Participants tended to delay the consultations and some did not complete them. Some participants said that it was ‘pointless,’ because of their supervisor’s attitude, or they wanted to practice such a consultation beforehand in order to be prepared (see also last paragraph of the results section).

The participants were asked to score how important the sessions’ themes were for them on a 1–10 scale (Table 4). The themes ‘Insight into feelings and thoughts about having a chronic disease’ (session 2) and ‘Communication and assertiveness’ (sessions 3 and 5), were valued highest, with a mean score of 8.0. The theme ‘Exploration of practical and psychosocial work-related problems,’ which included the explanation of the model ‘Quality of work’ (session 1), scored 7.6. The theme of the sixth session, developing a ‘SMART’ personal plan, scored 7.5. ‘Practical matters; the occupational physician, the employment expert, legislation and facilities for disabled employees’ was evaluated as lowest, with a mean score of 7.0, and a high standard deviation. The training programme as a whole was evaluated with a mean score of 8.1 immediately after completion; this dropped 0.2 points 8 months later and 0.3 points 24 months later.

Eighty-six per cent of the participants always read the short introductions in the course book to prepare for the group sessions, whereas 95% had read the entire course book at the end of the training course. The course book was rated with an average score of 7.9. Most valued were the chapters on communication and assertiveness, and on feelings and thoughts about having a chronic disease. Lowest valued, with the highest standard deviation, was the chapter on legislation and work accommodations.

A variety of methods was used in the training programme: theoretical explanation, exchange of experiences, role-playing, and homework, such as completing the model ‘Quality of work’, or arranging a consultation with a supervisor and occupational physician. The exchange of experiences among participants received the highest mean score among these. Role-playing and seeing and discussing others’ role-playing was also highly appreciated, as were the individual consultations with the trainers. Less valued were arranging a consultation with a supervisor and with an occupational physician. Non-response on these two questionnaire items was high, 7 and 15, respectively, which indicates that these arrangements not always took place.

The expertise of the trainers was overall judged very positively (mean score 68 on a 16–80 scale), and the advice given by the trainers was felt to be helpful. The participants felt well-treated and felt that they received personal attention during the programme. They considered introductory information to be sufficient, although this could have been better for a minority. The three trainers were judged almost equally. Satisfaction with the trainers was not lower in the three groups in which the trainers acted for the first time, when compared to the five groups for which trainers were more experienced.

The training programme used a stepwise approach: first exploring and clarifying work-related problems, then focusing on communication at work, and finally working on developing and realizing solutions. Eight months after the start, 84% of the participants found that the first phase worked well, while 69% found that the second phase and 65% found that the third phase worked well (Table 5).

The majority of the participants, 53 persons, had, as part of the training, discussed matters with their supervisor in order to find a solution for work-related problems. Fifty-three per cent of them felt this contributed a great deal to solving problems, 40% said that it contributed somewhat, whereas 6% said that it did not contribute and 2% felt these discussions had worked negatively.

Table 6 presents the effects of the programme on various aspects of working with a chronic disease, as perceived at 12 months follow-up. The participants noticed positive effects most often with regard to how they experienced and dealt with disease and work. This was followed by how matters at work were discussed and how they dealt with the supervisor and colleagues. An effect was noticed least often in work accommodations. After 24 months, 79% perceived a lasting effect of the training programme, 10% perceived an effect that had faded away, 3% were not sure whether it had lasted, and 8% perceived none or only a limited effect.

In the course of the programme, the participants formulated a plan of action with one or more personal goals. These goals related to work-home interference (78%), feelings and thoughts about having a chronic disease (59%), communication at the workplace (44%), leisure time (33%), work accommodations (29%) or other topics (18%). One year after the start of the programme, 6 per cent felt that they had not reached the goal that they set in the course of the programme, 38% reached it ‘a little,’ 36% reached it amply and 20% completely.