Effects of a multidisciplinary group rehabilitation programme on participation of the visually impaired elderly: a pilot study.

PURPOSE: To pilot test the newly developed multidisciplinary group rehabilitation programme Visually Impaired elderly Persons Participating (VIPP). METHOD: A single group pretest-posttest design pilot study included 29 visually impaired persons (≥ 55 years). The intervention (20 weekly meetings) consisted of four components (practical training; education, social interaction, counselling and training of problem-solving skills; individual and group goal setting; home-based exercise programme). Participation was assessed with the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) and the Impact on Participation and Autonomy (IPA) questionnaire at baseline, immediately and 6 months after the intervention. RESULTS: At scale level, no statistical significant changes over time were found whereas the effect size indicated small effects for restrictions and satisfaction with participation, and a medium effect for autonomy outdoors. At item level, improvements tended to occur in frequency of housekeeping, in restrictions in housekeeping and outdoor activities and in satisfaction with the partner relationship. Satisfaction with leisure indoors and autonomy regarding using leisure time tended to increase as well. CONCLUSIONS: The tentative conclusion of this small-scale pilot study is that the VIPP programme modestly benefits perceived restrictions in participation, satisfaction with participation and autonomy outdoors of the visually impaired elderly. These preliminary findings warrant further investigation.

Determinants of social participation of visually impaired older adults.

PURPOSE: To assess determinants of social participation among visually impaired older adults. METHODS: This cross-sectional study included visually impaired persons (≥55 years; n = 173) who were referred to a low-vision rehabilitation center. Determinants (i.e., sociodemographic, physical, social and psychological factors, and personal values) of participation were identified in four domains of participation: (1) domestic life; (2) interpersonal interactions and relationships; (3) major life areas; and (4) community, social, and civic life. Study participants completed telephone interviews. RESULTS: Age, physical fitness, and helplessness were determinants of participation in domestic life. Social network size was associated with participation in major life areas. The personal value attached to participation (i.e., perceived importance) was a determinant of participation in interpersonal interactions and relationships, major life areas, and community, social and civic life. Vision-related characteristics (i.e., self-perceived vision and degree of visual impairment) were not associated with participation. CONCLUSIONS: Across the participation domains, perceived importance is a major determinant of social participation among visually impaired older adults. Physical health along with social and psychological status, also affect participation. Knowing how participation is determined can be used to develop rehabilitation interventions to enhance participation of visually impaired older adults.

Loneliness and self-management abilities in the visually impaired elderly.

OBJECTIVE: To describe the degree of loneliness among the visually impaired elderly and to make a comparison with a matched reference group of the normally sighted elderly. In addition, we examined self-management abilities (SMAs) as determinants of loneliness among the visually impaired elderly. METHOD: In a cross-sectional study, 173 visually impaired elderly persons completed telephone interviews. Loneliness and SMAs were assessed with the Loneliness Scale of De Jong Gierveld and the SMAS-30, respectively. RESULTS: The prevalence of loneliness among the visually impaired elderly was higher compared with the reference group (50% vs. 29%; p < .001). Multivariate hierarchical regression analysis showed that the SMA self-efficacy, partner status, and self-esteem were determinants of loneliness. Severity and duration of visual impairment had no effect on loneliness. DISCUSSION: The relationship between SMAs (i.e., self-efficacy) and loneliness is promising, as SMAs can be learned through training. Consequently, self-management training may reduce feelings of loneliness.

Participation of the elderly after vision loss.

PURPOSE: To assess the degree of participation of the visually impaired elderly and to make a comparison with population-based reference data. METHOD: This cross-sectional study included visually impaired elderly persons (≥55 years; n = 173) who were referred to a low-vision rehabilitation centre. Based on the International Classification of Functioning, Disability and Health (ICF) participation in: (1) domestic life, (2) interpersonal interactions and relationships, (3) major life areas, and (4) community, social and civic life was assessed by means of telephone interviews. In addition, we assessed perceived participation restrictions. RESULTS: Comparison with reference data of the elderly showed that visually impaired elderly persons participated less in heavy household activities, recreational activities and sports activities. No differences were found for the interpersonal interactions and relationships domain. Participants experienced restrictions in household activities (84%), socializing (53%), paid or voluntary work (92%), and leisure activities (88%). CONCLUSIONS: Visually impaired elderly persons participate in society, but they participate less than their peers. They experience restrictions as a result of vision loss. These findings are relevant, since participation is an indicator for successful aging and has a positive influence on health and subjective well-being.

Psychosocial dysfunction in the first year after Guillain-Barré syndrome.

In this investigation we study the impact of Guillain-Barré syndrome (GBS) on psychological distress, depressive symptoms, and health status of patients during the first year after GBS. At 3, 6, and 12 months, patients were given the General Health Questionnaire, the Sickness Impact Profile, and the Center for Epidemiologic Studies Depression Scale. Eighty-five patients participated. Psychological distress and depressive symptoms were present but improved between 3 and 6 months. At 12 months the psychosocial health status was still impaired. Patients who perceived their physical residua to be moderately to seriously disruptive and patients with muscle ache and cramps had worse scores on all scales. It can be concluded that most of the improvement occurred in the first 6 months. Psychosocial health status, however, was still impaired at 1 year, but depressive symptoms played no role. Treatment of muscle ache and cramps, and the disruptive effect of physical residua should be seriously considered.

Predictors of functional disability in rheumatoid arthritis: results from a 13-year prospective study.

PURPOSE: To explore the role of distress and social support as modifiers of functional disability in rheumatoid arthritis (RA). We hypothesized that: (a) higher inflammatory activity, more joint tenderness and more pain lead to more disability, and (b) that more distress and less social support lead to more disability and accelerate the disablement process by moderating the effects of inflammatory activity, joint tenderness and pain. METHODS: The study is a Dutch extension of the European Research on Incapacitating Diseases and Social Support (EURIDISS) which started with 292 patients. After five waves of data collection 129 still participated. Correlational and hierarchical regression analyses were performed. RESULTS: In short-term RA, 68% of the variance in disability could be explained primarily by mean disability over the prior years. Other important predictors were inflammatory activity and pain. In long-term RA, 56% of the variance in disability could be explained primarily by mean disability over the prior years. Other important predictors were joint tenderness and pain. No clear moderator effects of distress and social support were found in short-term or long-term RA. CONCLUSIONS: The results confirm the main pathway from pathology to disability in short-term and long-term RA, but do not provide support for the influence of distress and social support on the disablement process.

Amputation, phantom pain and subjective well-being: a qualitative study.

The purpose of this qualitative study was to explore the impact of an amputation and of phantom pain on the subjective well-being of amputees. Sixteen lower-limb amputees were interviewed. A semi-structured interview and two Visual Analogue Scales were used. To interpret the results, a new socio-medical model joining two models, 'The Disablement Process model' and the 'Social Production Function theory', was used. Questions were asked concerning the factors influencing patients' subjective well-being prior to, at the time of and after an amputation. These factors were patients' medical history, their phantom sensations and phantom pain, their daily activities, the social support they received, and the influence of an amputation and phantom pain on long-term behaviour and on their subjective well-being. All factors were found to have an influence on the individual's subjective well-being. All these factors, however, seemed to reinforce each other. Therefore, the greatest influence of factors on subjective well-being occurred when more than one factor was involved. Substituting certain activities by others then becomes less and less effective in inducing a sense of subjective well-being.

Disability, social support, and distress in rheumatoid arthritis: results from a thirteen-year prospective study.

OBJECTIVE: To examine the strength and stability of the relationships between disease-related factors (joint tenderness, pain, and functional disability), social support, and distress over time, and to investigate to what extent disease-related factors and social support can predict distress in short-term and long-term rheumatoid arthritis (RA). METHODS: The study was a Dutch extension of the European Research on Incapacitating Diseases and Social Support and started with 292 patients. After 5 waves of data collection, 129 patients remained. Composite measures were computed following the area under the curve approach. Interaction terms were computed between functional disability and social support satisfaction. Correlational and hierarchical regression analyses were performed. RESULTS: In patients with short-term RA, disease-related factors and social support were important in determining distress. Also, a buffering effect of social companionship was found. In total, 51% of the variance in distress in short-term RA could be explained primarily by mean distress over the previous years. In patients with long-term RA, disease-related factors remained important in determining distress, but to a lesser extent. Seventeen percent of the variance in distress in long-term RA could be explained primarily by mean distress over the years before. CONCLUSION: During the course of the disease, patients may learn to adjust to their disease and its consequences and are able to maintain a normal distress level. The effect of the disease on psychological distress decreased over the years. Some support for the buffering hypothesis of social support was found in short-term RA, but not in long-term RA.

The effects of Guillain-Barré syndrome on the close relatives of patients during the first year.

OBJECTIVE: To study the impact of Guillain-Barré Syndrome (GBS) on the psychosocial functioning of the closest relative and on family functioning during the first year after GBS. METHOD: At 1 (=T1), 3 (=T3), 6 (=T6), and 12 months (=T12) after the onset of GBS, relatives of patients received the General Health Questionnaire (GHQ28) and the Family Assessment Device (FAD). Sixty-three relatives returned the GHQ28 at all four designated intervals. At T1 the relatives also received a questionnaire that contained questions on the impact on their daily life. The answers to these questions yielded a Daily Living Impact index. From the 110 relatives, 86 returned this questionnaire. RESULTS: 72% of the 86 relatives reported one or more problems in daily living. At T1 the scores of the GHQ subscales ranged from normal to mildly disturbed. The relatives showed significant improvement in their somatic complaints and anxiety during the first half year. Social dysfunction remained somewhat less than normal, severe depression was not found. At T1 and T3 the scores of the GHQ28 and some subscales differed significantly depending on the severity of the functional status of the patient, but not at T6 and T12. Relatives of patients with severe residua at 1 month score worse on the GHQ28 and most subscales at 6 months. The FAD was normal at all moments measured. CONCLUSIONS: Psychological morbidity of close relatives is significantly higher in the first months after the onset of GBS. The patient's condition has an important impact on the psychosocial functioning of close relatives. Therefore, a family approach is recommended to neurologist and other medical personnel during the first period of the disease. Also patient support groups may play a beneficial role for the relatives of GBS patients.

Contribution of partner support in self-management of rheumatoid arthritis patients. An application of the theory of planned behavior.

The aim of this exploratory study was to test the applicability of a model derived from the Theory of Planned Behavior on self-management. In this model social support from the partner, attitude and self-efficacy are determinants of intention, and intention and self-efficacy are determinants of self-management. We tested the model on rheumatoid arthritis patients who have a partner, using regression analyses and structural equation models. Partner support and attitude partly explained the variance in intention. Intention in turn partly explained the variance in self-management. Self-efficacy showed a tendency to positively affect intention and self-management. The present study provided moderate support for the use of the constructs and ideas derived from the Theory of Planned Behavior-attitude, social support, self-efficacy, and intention-in predicting and explaining self-management.

How Guillain-Barre patients experience their functioning after 1 year.

OBJECTIVE: To analyze how the patient himself perceives his physical and social situation 1 year after Guillain-Barre syndrome (GBS). MATERIAL AND METHOD: The Dutch patients who participated in an international multicenter trial were asked to complete a self-administered questionnaire containing questions on their physical status at homecoming and at 12 months, as well as questions dealing with various aspects of their social condition. RESULTS: Ninety patients participated. Up to 72% had sensory disturbances and loss of power in part of the arms and up to 89% in part of the legs at homecoming. At 12 months, a significant improvement had occurred, but residua were perceived in 36 and 67%, respectively. The residua ranged from irritating to seriously disturbing in up to 49%, and only 33% felt completely cured. Furthermore, 32% had changed their work due to GBS, 30% did not function at home as well as before and 52% had altered their leisure activities. CONCLUSION: One year after the onset of GBS, a considerable number of patients still perceived a decrease of power and sensation with an often disturbing effect. GBS had an evident impact on daily life and social well-being.