Physical strain

Persons with SCI are known to have an inactive lifestyle, and deconditioning and secondary complications may contribute to this behaviour. Self-management is an important factor in the development and treatment of an inactive lifestyle, deconditioning and secondary complications. For example, a substantial part of the secondary complications experienced by persons with long-term SCI could, according to themselves, be related to management of their own behaviour, with lack of information as an important factor.. This may also hold true for the poor fitness described in SCI. Education programs can be used to modify behaviour. Programs have been developed for the prevention of specific secondary complications, such as pressure sores and problems with sexuality and bladder care. These programs have proven to be effective on knowledge; however, many participants continued to demonstrate poor problem-solving ability. For effective self-management, education programs should incorporate more active learning strategies in addition to knowledge transfer, such as strategies on problem-solving ability and on proactive coping . These strategies will facilitate the transfer of knowledge towards behaviour within life situations. The current project primarily aims to study the effects and mechanisms of a structured self-management intervention on active lifestyle and on problem-solving ability and proactive coping. Additionally, effects on physical fitness, secondary complications (bladder, bowel, skin), goal attainment, activities, participation, QoL, knowledge, and exercise self-efficacy will be evaluated. We expect that in participants with improvements in problem-solving ability and proactive coping, the intervention will result in more favourable effects on active lifestyle than in participants with no improvements in these abilities.

The study is a single-blind multi-centre randomized clinical trial (researcher is blind of treatment allocation), comparing a structured self-management intervention with focus on problem-solving ability and proactive coping with a control intervention (only knowledge transfer).

In four RCs (Rijndam, Hoogstraat, Roessingh, Hoensbroek) a selection of persons (n=80) with the 50% lowest level of physical activity (PASIPD; [60-62]) from the cohort in study 1 will be randomly divided in an intervention (n=40) and control (n=40) group (TSI 10-30yrs; age at onset SCI 18-35yrs). If necessary, additional participants showing similar low levels of physical activity will be locally recruited. Exclusion criteria: insufficient knowledge of the Dutch language and cognitive deficits.

The intervention group will receive a structured self-management intervention towards health promotion regarding active lifestyle, fitness, bladder care, bowel care, and skin care. The intervention concerns tailored group and individual sessions with individual goals concerning the above health aspects. The intervention incorporates knowledge transfer and active learning strategies with focus on problem-solving ability and proactive coping, founded within principles of adult learning, as suggested by May et al. and Colland et al. Knowledge transfer will comprise information on inactive lifestyle, de-conditioning, secondary complications, their consequences for health, and prevention and treatment possibilities. Problem-solving is a complex process that includes two broad components: problem orientation and problem-solving skills. The first component focuses on motivation and includes attitudes and thinking styles that are influenced by an individual’s past experiences. The second component is comprised of four goal-directed tasks of defining the problem, generating alternatives, decision-making and solution implementation and monitoring which are required to solve a problem effectively. Proactive coping means that people not only react on threatening situations, but that they can also anticipate on situations that may threat their goals in the future. Proactive coping will focus on four themes: 1) staying active and fit, 2) preventing getting worse; 3) coping with negative emotions, and 4) asking support from partner, neighbours, and family and giving support to partner. With regard to the first theme (staying active and fit), we will use aspects of the ‘Active after Rehabilitation’ and ‘Rehabilitation and Sports’ programs of Van der Ploeg et al. as developed by EMGO institute VUmc and HealthPartners Health Behavior Group (Minneapolis, USA). The ‘Active after Rehabilitation’ program aims at individually tailored advice on daily physical activity and is based on the stages of change concept of the Transtheoretical model. This model distinguishes five stages of change: precontemplation (not intending changing lifestyle in the next six months), contemplation (intending changing lifestyle in the next six months), preparation (intending changing lifestyle within a month and taken some action already in the past year), action (having made specific overt modifications in lifestyle within the past six months) and maintenance (continuing lifestyle change and preventing relapse). Sessions are supported by folder material specific to the stage of change according to materials from EMGO Institute VUmc and HealthPartners Health Behavior Group (Minneapolis, USA). The ‘Rehabilitation and Sports’ program comprises individual sports advice and sport workshops in which participants can experience sports activities. There is some evidence for the effectiveness of such a behavioral intervention. The intervention consists of 2 phases. The first phase (8 weeks) consists of one 1-hr session per week in the rehabilitation centre (total of 8 sessions). In the second phase (8 weeks) people will visit the centre once a month (total of 2 sessions); if needed, telephone contacts may be added to these visits. The program consists of group sessions with 6-8 participants per group (including group discussions and peer support) and individual teaching and counseling sessions, with in the first phase more focus on group sessions, and in the second phase more on individual sessions. All sessions are supervised by a psychologist and a physical therapist, and supported by guest speakers (physician, sports counselor) and role models. Professionals in all participating centres will receive extensive instruction on the content of the intervention.

The control group will only receive information on inactive lifestyle, de-conditioning, and secondary complications during one 1-hr (group) session per week in the rehabilitation centre (total of 8 sessions). The information is comparable to the information that is provided in the experimental group. Participants in the control group will be offered to start with the proposed intervention after the final measurements.

To get insight in the mechanisms of the intervention, this study will specifically focus on the relation between (changes in) problem-solving ability and pro-active coping and goal attainment regarding active lifestyle, fitness, and secondary complications. Furthermore, we will focus on the determinants of change in participation and QoL; in other words, are changes in participation and QoL related to changes in active lifestyle and fitness and are these associations mediated by changes in secondary complications?

Contact address

Sonja de Groot / Lucas van der Woude

Center for Human Movement Sciences

University Medical Center Groningen

University of Groningen

Antonius Deusinglaan 1

9713AV Groningen,

The Netherlands