L.P. de Witte

Impact of environmental factors on community participation of persons with an intellectual disability: a systematic review

STUDY DESIGN A systematic review of the literature. OBJECTIVES To describe which environmental factors have an impact on community participation of persons with an intellectual disability. METHODS A systematic literature search was conducted for the period of 1996-2006 in Pubmed, CINAHL and PSYCINFO. Search terms were derived from the International Classification of Functioning, Disability and Health. Three investigators assessed the relevance of the studies identified using predefined selection criteria. Aspects of community participation included were: domestic life; interpersonal interactions and relationships; major life areas; community, civic and social life. Environmental factors included were: products and technology; natural environment and human-made changes to environment; support and relationships; attitudes; services, systems and policies. RESULTS Out of 236 initial hits, 9 quantitative studies and 2 qualitative studies met the predefined selection criteria and were included in the study. Various research instruments were used in the studies and only one study used a conceptual framework. The review allowed the identification of a number of environmental factors positively affecting participation: opportunities to make choices; variety and stimulation of the environment of facilities; opportunities for resident involvement in policy making; small residential facilities; opportunities for autonomy; vocational services; social support; family involvement; assistive technology; and positive staff attitudes. A number of identified environmental factors negatively affecting participation are: lack of transport and not feeling accepted. DISCUSSION It can be concluded that little has been published about the impact of environmental factors on community participation. Many studies do not clearly define the concept of community participation. Research on the impact of environmental factors on community participation so far seems not to be based on a theoretical framework. Most studies focused on the impact of services on community participation in general.

Burden of support for partners of persons with spinal cord injuries

Study design:Cross-sectional survey.Objectives:(1) To describe the support given to persons with spinal cord injuries (SCI) by their partners, (2) to describe the perceived burden of support by partners and (3) to examine predictors of perceived burden of support.Setting:The Netherlands.Methods:All members of the Dutch patients organisation DON (N=1004) and their caregivers, if applicable, were invited. Physical disability of the person with SCI was measured using the Barthel Index (BI). A number of secondary conditions, other practical problems and psychosocial problems were recorded. Partner support was described using a list of ADLsupport, other practical support and emotional support. Burden of support was measured by a six-item measure (Cronbachs alpha 0.92), Nonparametric descriptive statistics and correlations were used. Linear regression was used to identify predictors of caregiver burden.Results:Responses were obtained from 461 persons with SCI. Of 265 couples, patient as well as partner data were available. Mean age of the partners was 49.4 years (SD 12.2) and 69.8% were women. Mean BI of the persons with SCI was12.3 (SD 4.7) on a 0–20 scale and 60.4% were seriously disabled (BI<15). Most partners provided various kinds of support. ADL-support and other practical support were given much more often by partners of persons with serious disability, but less difference was seen regarding emotional support. Professional (paid) support was obtained by 45.3% of all couples. Perceived burden of support was high in 24.8% of partners of persons with serious disabilities against 3.9% of partners of persons with minor disabilities. Significant predictors of caregiver burden were (in order of importance) the amount of ADL support given, psychological problems of the patient, partner age, partner gender, BI score and time after injury (total explained variance 47%).Conclusion:A substantial proportion of partners of persons with SCI suffer from serious burden of support. Prevention of caregiver burnout should be part of the lifelong care for persons with SCI.

Facilitating the participation of people with aphasia in research: a description of strategies:

Background: People with aphasia are often excluded from research because of their communication impairments, especially when an investigation into the communication impairment is not the primary goal. In our research concerning social participation of people with aphasia, we wanted to include people with mild, moderate as well as severe aphasia. Aim: To suggest strategies and techniques for research in people with aphasia based upon experiences in conducting research in this group of people. Methods: We conducted a qualitative study and a quantitative study in people with aphasia concerning their social participation. In these studies different strategies were developed based upon the literature, conversations with people with aphasia and speech and language therapists, to facilitate the inclusion of people with aphasia, even those with severe communication problems. Several strategies were evaluated. The strategies used and our experiences are outlined in this report. Main contribution: It is possible to conduct research in this group. Several strategies were helpful to make this mission possible: the use of pre-structured diaries, the use of in-depth interviews with attention to non-verbal communication, the use of existing measurements, adjusted for people with aphasia by: using pictograms, placing one question per page, bolding the key concepts in the question, using large font, visualizing the answering possibilities in words and in pictures, reducing the question length, and excluding negatives in the question. Conclusion: Research in people with aphasia is possible when using strategies adjusted to the communicative impairment.

Daily functioning of the lower extremity amputee: an overview of the literature

The aim of this paper is to review the existing literature on the incidence, morbidity and mortality of lower limb amputation. The functional level of the lower limb amputee and the predictive factors for functioning with a prosthesis are reviewed, both for unilateral and for bilateral amputees. The reported incidence of lower extremity amputation (LEA) varies considerably between different Western countries. The mean survival of LEA patients ranges between two and five years. Assessment of functional outcome is carried out differently. Studies are not comparable and most concern selected groups of amputees. Increasing age, concurrent disease and poor compliance are prognostic factors for a low functional level. For optimal planning of rehabilitation it is necessary to study a complete cohort of amputees with respect to these prognostic factors.

Follow-up care for persons with spinal cord injury living in the community: a systematic review of interventions and their evaluation.

Study design:Systematic review.Objectives:(1) To describe and compare follow-up care programmes, performed by rehabilitation centres, for persons with spinal cord injury (SCI) and (2) to describe the effects of these programmes regarding the occurrence of secondary impairments, well-being, the quality and costs of care.Methods:A systematic literature search was conducted in MEDLINE (1972–2003) and CINAHL (1982–2003). Publications were selected about medical and/or nursing follow-up care to SCI patients living in the community performed by or with rehabilitation facilities for SCI patients. The aim of the follow-up care should be a decrease of secondary impairments, an improvement of well-being, an improvement of the quality and/or a decrease of the costs of care.Results:The search resulted in 24 papers. The descriptions of the programmes in these papers were sometimes rather scattered, vague or brief. The most important methods were telemedicine (six programmes; of which five were performed in the same rehabilitation centre), outpatient consulting hours (six programmes), home visits (three programmes, and case management (one programme). Eight other programmes combined several methods (ie outpatient consulting hours, home visits, peer teaching and support, outings, ongoing support, therapy from several care disciplines, SCI education, providing SCI expertise and support to community health-care providers, coordination of care with community nursing agencies). In all, 16 programmes have been evaluated to some degree. In general the quality of the studies was low. Most evaluations were pre-experimental in design. Only three were quasi-experimental, and two programmes were experimental in design. Although several studies claimed positive effects, it was not possible to draw conclusions on the effect of follow-up care on the occurrence of secondary impairments, well-being, the quality and costs of care.Conclusion:There is a need for the development, the publication and the well-designed evaluation of follow-up care programmes for persons with SCI.

Health behaviour of persons with spinal cord injury

Study design:Postal survey.Objective:To describe the health behaviour of persons with spinal cord injury (SCI) living in the community and the relationships between health behaviour, respondent/injury characteristics, and health-related variables: the presence and number of secondary impairments, readmissions in rehabilitation centre and hospital, and perceived health.Setting:Members of the Dutch Association of Patients with SCI.Methods:The frequency of health behaviours, that delay or prevent secondary impairments, was assessed by means of a 22-item, self-report questionnaire. The questionnaire was also focused on 13 secondary impairments.Results:The frequency of engaging in health behaviour varied considerably between the respondents. Variance was observed between and within the health behaviours measured. The respondents did not frequently engage in pressure relief methods when sitting/driving in their wheelchair. Almost no statistical differences were observed between health behaviour of subgroups of respondents based on respondent/injury characteristics. However, the total health behaviour scores increased significantly with increasing age and pressure sore prevention was significantly more applied in persons with a complete lesion. Health behaviour was significantly more applied in respondents who had one or more secondary impairments.Conclusion:As secondary impairments are prevalent among persons with SCI and education on a healthy lifestyle is a core component of every rehabilitation programme, it is of great importance to rigorously test the efficacy of health behaviours promoted during rehabilitation. Therefore, longitudinal research is recommended.

Reducing disability in community-dwelling frail older people: cost-effectiveness study alongside a cluster randomised controlled trial

BACKGROUND although proactive primary care, including early detection and treatment of community-dwelling frail older people, is a part of the national healthcare policy in several countries, little is known about its cost-effectiveness. OBJECTIVE to evaluate the cost-effectiveness of a proactive primary care approach in community-dwelling frail older people. DESIGN AND SETTING embedded in a cluster randomised trial among 12 Dutch general practitioner practices, an economic evaluation was performed from a societal perspective with a time horizon of 24 months. METHOD frail older people in the intervention group received an in-home assessment and interdisciplinary care based on a tailor-made treatment plan and regular evaluation and follow-up. Practices in the control group delivered usual care. The primary outcome for the cost-effectiveness and cost-utility analysis was disability and health-related quality of life, respectively. RESULTS multilevel analyses among 346 frail older people showed no significant differences between the groups regarding disability and health-related quality of life at 24 months. People in the intervention group used, as expected, more primary care services, but there was no decline in more expensive hospital and long-term care. Total costs over 24 months tended to be higher in the intervention group than in the control group (€26,503 versus €20,550, P = 0.08). CONCLUSIONS the intervention under study led to an increase in healthcare utilisation and related costs without providing any beneficial effects. This study adds to the scarce amount of evidence of the cost-effectiveness of proactive primary care in community-dwelling frail older people. TRIAL REGISTRATION Current Controlled Trials, ISRCTN 31954692.

Effectiveness of provision of outdoor mobility services and devices in the Netherlands

Objective: To answer the following questions: What are the problems encountered by people with outdoor mobility disabilities? What solutions are being offered to them in the Netherlands? How effective are these solutions? How responsive is the IPPA instrument (Individually Prioritized Problem Assessment)? Design: Analysing the results of a follow-up study using the IPPA instrument. Setting: The Dutch Service for the Disabled Act (SDA, in Dutch: WVG) provision system. This act is responsible for the provision of mobility aids and home adaptations. Subjects: Fifty-nine people with outdoor mobility disabilities. Interventions: The provision of outdoor mobility service and devices. Main outcome measures: Effectiveness of provisions as measured using IPPA (i.e., the degree to which activities have become less difficult to perform), effect size of IPPA with this intervention. Results: Problems identified by clients are very diverse and specific but can be classified fairly well on the basis of the International Classification of Functioning, Disability and Health (ICF); in the main, the solutions they are provided with are very similar and generic. Effectiveness is excellent at a group level, but insufficient for some at an individual level. The IPPA instrument is highly responsive in this setting. Most mobility problems respondents identified, although very individual and specific, were related to shopping, social visits or leisure activities. These specific sets of problems were solved using ‘standard’, generic solutions. Conclusions: The Dutch provision system should be more ‘demand oriented’ and less ‘supply oriented’. IPPA turns out to be a useful, structured and individualoriented method to evaluate service delivery.

Post-discharge nursing problems of spinal cord injured patients: on which fields can nurses contribute to rehabilitation?

Objective: To identify nursing problems of spinal cord injured (SCI) patients after discharge from clinical rehabilitation and to identify gaps in the nursing care regarding the prevention of these problems. Design: The study had an exploratory character and was divided into three phases. Phase 1 had a qualitative nature. Eight patients were interviewed to obtain insight into experienced problems after discharge. In phase 2, a panel of experts regarding nursing care for SCI patients selected nursing problems out of all problems mentioned. Phase 3 consisted of a mailed questionnaire including the nursing problem areas identified in phase 2, which was sent to all patients that were discharged during the last 18 months before the study. Setting: Specialist rehabilitation centre, the Netherlands. Subjects: Eight patients participated in phase 1 (100% response rate), 35 nurses participated in phase 2 (87.5% response rate) and 35 patients participated in phase 3 (62.5% response rate). Results: The most important nursing problems in the response group appeared to be: limitations to activities of daily living, having difficulties in asking for help (assertiveness), pain, coping with the disability, dependency on personal help and problems with changed bladder regulation. The respondents made several suggestions for improving nursing care, involving both clinical care and care after discharge. Conclusions: SCI patients experience serious problems after discharge from clinical rehabilitation. Nurses can give input on a wide variety of these problems.

Effects and Effectiveness of Dynamic Arm Supports: A Technical Review

ABSTRACTNumerous dynamic arm supports have been developed in recent decades to increase independence in the performance of activities of daily living. Much effort and money have been spent on their development and prescription, yet insight into their effects and effectiveness is lacking. This article is a systematic review of evaluations of dynamic arm supports. The 8 technical evaluations, 12 usability evaluations, and 27 outcome studies together make 47 evaluations. Technical evaluations were often used as input for new developments and directed at balancing quality, forces and torques, and range of motion of prototypes. Usability studies were mostly single-measure designs that had varying results as to whether devices were usable for potential users. An increased ability to perform activities of daily living and user satisfaction were reported in outcome studies. However, the use of dynamic arm supports in the home situation was reported to be low. Gaining insight into why devices are not used when their developers believe them to be effective seems crucial for every new dynamic arm support developed. The methodological quality of the outcome studies was often low, so it is important that this is improved in the future.