Response and background characteristics
Eighty four out of 97 patients (87%) participated in the interview after 6 months, and 70 patients (72%) participated in the interview after 12 months. Participating patients had a mean age of 78.8 years (SD=6.3), an a mean activity level (FAI score) of 40.2 (SD=8.8) a mean functional independence level (Katz-15 score) of: 6.0 (SD=4.0), and mean cognitive score (MMSE-score: 21.9, SD=5.2, threshold: ≤23.0). Regarding the informal caregivers, 68 informal caregivers out of 89 (76%) completed the questionnaire after 6 months, and 64 informal caregivers (71%) after 12 months. Participating informal caregivers had a mean age of 61.0 years (SD=13.5), and a mean self-rated burden vas of 4.0 (SD=2.4). Main overall reasons why patients and informal caregivers did not participate in the interviews were loss of interest (N=6), lack of time (N=3), an intercurrent illness (N=4), or deceased (N=7). Background characteristics of patients and informal caregivers are presented in table 3.
A total of 59 care professionals (57%) responded to the questionnaire. The group care professionals, who responded, consisted of elderly care physicians (N=2, 3%), physical therapists (N=16, 27%), occupational therapists (N=10, 17%), speech therapists (N=12, 20%), neuropsychologists (N=3, 5%), dieticians (N=3, 5%), and stroke care coordinators (N=13, 22%). The group interview was conducted with ten health professionals. All ten care professionals that were invited participated in the interview. The presented results of the interview were based on consensus of opinion within the group of care professionals who participated in the interview.
All care professionals who conducted the programme were experienced in stroke rehabilitation of elderly persons and were educated and trained in the relevant aspects of the intervention protocol.
Performance according to protocol and participation in the programme
Module 1: inpatient neurorehabilitation treatment for patients
At baseline 97 patients were allocated to the intervention group and started with module 1 in the geriatric rehabilitation unit. After 6 months 11 patients had dropped out of the rehabilitation programme because of cognitive deficits (N=3), loss of interest (N=3), being deceased (N=3) or other reasons (N=2). The first module was conducted from 16 November 2010 until 4 December 2014.
In table 4 the key components of the programme are presented. The multidisciplinary team developed with 94 (97%) of the 97 patient’s individual rehabilitation goals during inpatient and home based rehabilitation. During rehabilitation about two thirds (N=60, 62%) of the patients developed rehabilitation goals with a care professional by using the goal attainment scaling (GAS) method.
During the group interview there was consensus between the care professionals that setting rehabilitation goals by using the GAS method at the start of the rehabilitation was often difficult. Most participating care professionals mentioned that difficulties were often caused by limitations in communication skills of the patient and lack of insight in their disease. In those cases the therapist often set goals with the patient without using the GAS method. Almost all patients (N=96, 99%) received an introduction meeting with the stroke care coordinator.
About half of the patients (N=50, 52%) received at least one of the two home visits conducted by an occupational or physical therapist to practice in their own home environment and to check whether home adaptations should be made; eleven percent (N=11) of the patients received both therapy sessions at the patient’s home.
The group interview revealed that there was consensus between the therapists about the usefulness of home therapy, but it was often not performed because it was too time consuming due to travel distance.
Within the intervention period of two months 46 of the 97 patients (48%) were discharged home from the geriatric rehabilitation unit. However, almost half of the group (N=51, 52%) was still not discharged because of complications that delayed the rehabilitation such as stroke recidivism, cardiac complication and delay in home adaptations or waiting for alternative accommodation. These patients continued module 1 awaiting to be discharged back home. The mean duration of stay in the rehabilitation unit was 83 days (range 7-456 days).
Module 2: home based self-management training for patient and informal caregiver
After discharge from the geriatric rehabilitation unit, all 86 patients who were still participating in the study continued the programme with module 2. Of the total group of patients (N=86, 89%) who started module 2, 74 patients (86%) had an informal caregiver. The second module was conducted between 13 December 2010 and 14 December 2014.
Eighty-four patients of the total group of patients (N=97) (87%) practiced self-management skills, of which 53 patients (55%) practiced self-management skills without their informal caregiver. These practice sessions were conducted at the patient’s home under guidance and supervision of the stroke care coordinator. During the interview with care professionals and the stroke care coordinators there was consensus about that training self-management skills was often too difficult for patients because it was complicated for them to develop and carry out action plans by themselves. In a lot of cases the therapists or stroke care coordinators had to set relevant and realistic goals with the patients because the patient was not capable of setting them by themselves.
In the intervention protocol it was planned that patients should receive a minimum of one home visit of the stroke coordinator to check how the patient and informal caregiver were doing at home. A total of 78 patients (80%) received at least one home visit and 60 patients (62%) received two or more home visits at the patient’s home. The number of home visits by the stroke care coordinator ranged between 1 and 5 visits, with a mean of 1.7 visits per patient.
For 39% of the patients (N=38) at least half of the treatment sessions by the physical therapist was given at the patient’s home. In case of occupational therapy only 27% of the patients (N=26) received therapy at home. The other treatment sessions were given in day treatment, practice or outpatient care setting. Most important reason why therapy was not conducted at home was that home therapy was considered very time consuming and costly.
All participating eight geriatric rehabilitation units organized a multidisciplinary meeting every four weeks for care professionals who were involved in the rehabilitation of the patients who were allocated to the intervention group. Five out of eight participating geriatric rehabilitation units used the for the intervention developed electronic patient record for communication between the care professionals. The reason for not using the electronic patient record was that these three organisations used another electronic patient record, which was not compatible with the study electronic programme. All patients completed this module within 4 months.
Module 3: stroke education for patient and informal caregiver
The patients who completed module 1 and 2 and thereafter still were in the study (N=86) were invited for the four sessions of module 3. The information was handed out with further instruction and clarification by the stroke coordinator during a home visit with the individual patient and informal caregiver. Of the 86 patients who were invited to module 3, 68 (70%) agreed to participate and eventually 24 (25%) participated. The 24 patients who agreed to participate had a mean participation of 3.1 sessions. In total 64 of the 89 (72%) informal caregivers were invited, 23 (26%) informal caregivers participated with an average of 3.1 sessions. Main reason why patients (and related caregivers) not attended the sessions was because they were not interested in the sessions (N=39), illness (N=11), difficulties with transportation (N=8), readmission to a geriatric rehabilitation unit (N=5), too stressful (N=4), on vacation (N=3), work informal caregiver (N=2), deceased (N=2), and unknown (N=11). Thirteen education sessions had to be cancelled because there were too few participants.
We planned four sessions per participating rehabilitation unit per every 6 months. Every cycle a group of twelve persons at the most (6 patients and 6 informal caregivers) was included. Taken the inclusion period and the amount of participating rehabilitation units (N=8) into account we should have performed 15 education programmes of 4 sessions each, but eventually we only performed 6 education programmes of 4 sessions (40%) sessions. Main reason of the low number of sessions performed was the relatively low number of included participants per setting, which made it difficult to form groups and a lack of interest among the potential participants. Furthermore, the traveling distance to the sessions was in some cases a reason for not attending.
Opinions on the programme
All patients who participated in the programme were asked to give their opinion on the key components of the programme they had received. The opinion of the patients on the different elements of the programme is presented in table 5.
Of the fifty-six patients who followed module 1 and formulated goals with the care professionals, 54 patients (96%) indicated that they benefited from it. Almost all patients (98%) of the patients (N=51) who actually did receive home therapy reported to have benefited from these therapy sessions. From the patients who received module 2 and trained self-management skills by setting goals also almost all patients (N=34, 97%) indicated that they had benefited from this key element of the programme.
Patients who participated in the rehabilitation programme were asked how the programme could be improved. They indicated that the programme could be improved by providing more information about the program itself to the participants, increasing the support patients receive from the stroke coordinator and providing more information to the patients about the roles of the different care professionals who perform the programme.
Of the informal caregivers of which the patient actually followed module 1, 93% (N=50) perceived benefit of the support of the stroke care coordinator. Eighty-seven percent of the informal caregivers (N=40) of which the patient followed module 2 perceived benefit of goal setting for training self-management skills and 90% of the informal caregivers (N=38) benefited from developing action plans to fulfil self-management training.
The informal caregivers were asked how the programme could be improved. They made the following suggestions: more focus on the necessary home adaptions to facilitate a fast transfer back home, more personal support from the care coordinator during admission, better and faster continuation of the programme after discharge home.
The opinion of the 34 care professionals and 13 stroke coordinators who responded and filled in the questionnaire is presented in table 6. Thirty-three (97%) of the 34 care professionals who conducted all modules of the programme indicated that patients did benefit from the development of rehabilitation goals and 30 care professionals (91%) considered the use of the goals attainment scaling method to be beneficial for patients and informal caregivers. However, the self-management method which was used to stimulate patients in their problem-solving skills was perceived rather complex and difficult to apply. They considered it important to make this method more accessible for this frail population to improve its feasibility.
The stroke care coordinators were unanimously in their opinion about the benefits of developing rehabilitation goals, home visits after discharge and their personal guidance at home.
The results of the group interviews indicated that the education sessions should be changed on a few points. The group suggested to start with the sessions when patients are still at the geriatric rehabilitation unit, and combine the sessions with a training activity such as for example exercising with a physical therapist. Furthermore, in their opinion the group should not include more than maximum 10 patients. A larger group could lead to less interaction between the group members and information loss.
Both care professionals and stroke care coordinators mentioned that multidisciplinary team meetings and using an electronic patient record are important tools to optimize communication during rehabilitation. Finally, recommendations were made to continue the programme without the element of home visits to check for home adaptations and train with the patient at home, because of the time consumption and financial limitations. The role of the stroke care coordinator was indicated as very important and should be continued according to the care professionals. Facilitating further aftercare and guiding stroke patients and informal caregivers after discharge could be very important to prevent decline in functioning of the patient and admission in a long term care facility.