Thilo Kroll

Understanding the consequences of access barriers to health care: experiences of adults with disabilities

Purpose : The study explores: (1) the scope and nature of the consequences that adults with disabilities perceive as the result of inappropriate access to health care services; (2) the variability of these consequences by demographic attributes such as disability type, gender, and health insurance type; and (3) the inter-relatedness and multidimensionality of these consequences. Methods : Qualitative, semi-structured, in-depth interviews were administered over the telephone to 30 participants with spinal cord injury, cerebral palsy, or multiple sclerosis as part of a nation-wide study on access and utilisation in the USA. Interviews were transcribed and coded for analysis using the qualitative analysis program, NVivo. Results : Consequences were grouped into one of five categories: social, psychological, physical, economic and independence issues. Responses differed slightly with regard to disability type, gender and health insurance type. There was substantial overlap among consequence categories. For most respondents, negative consequences were not limited to just one area--frequently, one consequence triggered others. Conclusions : Health insurers and providers need a better understanding of the multiple consequences of access barriers. Based on this knowledge, detrimental and costly effects of inappropriate service delivery could be more effectively prevented. Implications for health care services and policy are discussed.

The SCI Exercise Self-Efficacy Scale (ESES): development and psychometric properties

BackgroundRising prevalence of secondary conditions among persons with spinal cord injury (SCI) has focused recent attention to potential health promotion programs designed to reduce such adverse health conditions. A healthy lifestyle for people with SCI, including and specifically, the adoption of a vigorous exercise routine, has been shown to produce an array of health benefits, prompting many providers to recommend the implementation of such activity to those with SCI. Successfully adopting such an exercise regimen however, requires confidence in ones ability to engage in exercise or exercise self-efficacy. Exercise self-efficacy has not been assessed adequately for people with SCI due to a lack of validated and reliable scales, despite self efficacys status as one of the most widely researched concepts and despite its broad application in health promotion studies. Exercise self efficacy supporting interventions for people with SCI are only meaningful if appropriate measurement tools exist. The objective of our study was to develop a psychometrically sound exercise self-efficacy self-report measure for people with SCI.MethodsBased on literature reviews, expert comments and cognitive testing, 10 items were included and made up the 4-point Likert SCI Exercise Self-Efficacy Scale (ESES) in its current form. The ESES was administered as part of the first wave of a nationwide survey (n = 368) on exercise behavior and was also tested separately for validity in four groups of individuals with SCI. Reliability and validity testing was performed using SPSS 12.0.ResultsCronbachs alpha was .9269 for the ESES. High internal consistency was confirmed in split-half (EQ Length Spearman Brown = .8836). Construct validity was determined using principal component factor analysis by correlating the aggregated ESES items with the Generalised Self Efficacy Scale (GSE). We found that all items loaded on one factor only and that there was a statistically significant correlation between Exercise Self-Efficacy Scale (ESES) and Generalised Self Efficacy Scale (GSE) (Spearman RHO = .316; p < .05; n = 53, 2-sided).ConclusionPreliminary findings indicate that the ESES is a reliable instrument with high internal consistency and scale integrity. Content validity both in terms of face and construct validity is satisfactory.

Supporting 'work-related goals' rather than 'return to work' after cancer? A systematic review and meta-synthesis of 25 qualitative studies

This study aimed to systematically review and synthesise qualitative studies of employment and cancer.

Using Focus Groups in Disability Research

Qualitative health service research has increasingly drawn on focus groups to inform health policy and intervention design. Focus groups provide opportunities to engage in the development and evaluation of health services for those service users who are often excluded from other forms of data collection. Increasingly, people with disabilities have been recognized as a marginalized group in health research. To provide appropriate accommodation and to maximize the utility of focus groups with people who have disabilities, careful preparation and planning are necessary. In this article, the authors highlight critical issues in conducting focus groups with people who have various impairments and provide advice on what to consider in terms of preparation and analysis.

Using peer mentoring for people with spinal cord injury to enhance self-efficacy beliefs and prevent medical complications.

AIMS AND OBJECTIVES Individuals with spinal cord injury/disease are faced with a myriad of psychosocial adjustment challenges. This article describes the implementation of a peer-mentoring programme designed to support this adjustment process for people with SCI/disease and the programmes believed impact on self-efficacy and prevention of medical complications. BACKGROUND With shorter length of stay in acute inpatient rehabilitation after spinal cord injury/disease, peer mentor programmes are becoming an important component to assist with education and community re-integration. DESIGN Quasi-experimental non-controlled pretest/post-test. METHOD Patients with newly acquired spinal cord injury/disease participated in a one-year spinal cord injury peer-mentoring programme. Peer mentors met with their assigned participants regularly during inpatient care and on discharge to track medical complications and assist with adjusting to life after spinal cord injury/disease. RESULTS In all, of 37 mentees enrolled, 24 successfully completed the programme. Sixty-seven per cent showed improved self-efficacy score between the two time points. Medical complications and doctor visits all decreased significantly between 0-6 months and 7-12 months. Our findings indicate that the older an individual is, the lower the likelihood of having a urinary tract infection (p = 0.006). The programme was well received by all mentees who felt they could connect well with their peer mentor. CONCLUSION Peer mentoring in a rehabilitation setting enhances the understanding of challenges that patients and medical staff deal with on a day-to-day basis. Our findings suggest it is important to monitor and educate individuals with spinal cord injury/disease at the acute stage to improve medical outcomes. Caution is advised in the interpretation of these results as they were obtained in a small non-random sample using self-report data. RELEVANCE TO CLINICAL PRACTICE Peer mentors play an increasingly important role in nurse-delivered education in the spinal cord injury/disease population.

The Importance of Psychological and Social Factors in Influencing the Uptake and Maintenance of Physical Activity after Stroke: A Structured Review of the Empirical Literature

Background. People with stroke are not maintaining adequate engagement in physical activity (PA) for health and functional benefit. This paper sought to describe any psychological and social factors that may influence physical activity engagement after stroke. Methods. A structured literature review of studies indexed in MEDLINE, CinAHL, P&BSC, and PsycINFO using search terms relevant to stroke, physical disabilities, and PA. Publications reporting empirical findings (quantitative or qualitative) regarding psychological and/or social factors were included. Results. Twenty studies from 19 publications (9 surveys, 1 RCT, and 10 qualitative studies) were included. Seventeen studies reported findings pertinent to psychological factors and fourteen findings pertinent to social factors. Conclusion. Self-efficacy, physical activity beliefs, and social support appear particularly relevant to physical activity behaviour after stroke and should be included in theoretically based physical interventions. The Transtheoretical Model and the Theory of Planned Behaviour are candidate behavioural models that may support intervention development.

Treatment adherence in juvenile rheumatoid arthritis--a review.

Adherence to long-term complex treatment in children with Juvenile Rheumatoid Arthritis (JRA) is a major problem. This article reviews psychosocial factors that compromise treatment adherence and discusses ways to improve long-term adherence. Child-centred information, therapy management, behaviour modification, and parental monitoring are described as adherence facilitating strategies for clinical and non-clinical settings. Finally, the implications for further practice and research are discussed.

Secondary conditions in spinal cord injury: Results from a prospective survey

Study design. Prospective, self-report mail survey with two points of measurement one year apart. Objectives. To determine significant predictors of pressure ulcers (PU) and urinary tract infections (UTI) in adults with spinal cord injury (SCI) over 2 years. Setting. Non-institutionalized adults with SCI living in the United States of America. Methods. Secondary data analysis from 2 consecutive years. Independent variables included demographic, healthcare-related, functional, access to care, and health behavior measures. Dependent variables were the occurrence of PU and UTI at Time 2. Results. Bivariate analyses showed significant associations between various independent variables and the occurrence of PU and UTI at Time 2. Separate logistic regression analyses for PU and UTI at Time 2 as dependent variables showed that PU at Time 1, not being married or cohabiting, not having access to primary care services when needed, and reporting a greater number of activities of daily living (ADL) requiring assistance were significant predictors of PU at Time 2. UTI at Time 1, a greater number of ADLs requiring assistance, and not engaging in weekly exercise are significant predictors of subsequent occurrence of UTI. Conclusions. Findings support previous research, and indicate the need for increased efforts to provide SCI self-management education to at-risk subpopulations, including individuals with greater personal assistance needs and functional limitations.

Psychosocial services in the first 30 days after diagnosis: Results of a web‐based survey of children's oncology group (COG) member institutions

This study examines what proportion of families of recently diagnosed pediatric cancer patients are offered recommended psychosocial services, and if that proportion is linked to size of institution or number of psychosocial staff.

From physical and functional to continuity with pre-stroke self and participation in valued activities: A qualitative exploration of stroke survivors’, carers’ and physiotherapists’ perceptions of physical activity after stroke

Abstract Purpose: Physical activity (PA) improves fitness, functioning, health and wellbeing after stroke. However, many survivors are inactive. This study explored survivors’, carers’ and physiotherapists’ beliefs about PA to identify how these support or hinder PA participation. Methods: Semi-structured in-depth interviews with community dwelling stroke survivors (n = 38); two focus groups involving six carers each; two focus groups, respectively, involving seven and eight stroke rehabilitation physiotherapists from clinical and community settings. Data were audio-recorded and transcribed. Analysis was structured using the Framework Approach to identify themes and a dynamic, conceptual model. Findings: Desired outcomes and control over outcome achievement were key concepts. For survivors and carers, PA supported participation in valued activities, providing continuity with pre-stroke sense of self. Carers adopted motivating strategies for PA to support recovery and participation in shared activities. In contrast, physiotherapists prioritised physical and functional outcomes and viewed survivors’ control of outcomes as limited which was reflected by the support they provided. Conclusions: Individualised interventions that account for social and environmental influences on behaviour appear vital to enabling survivors to participate in meaningful physical activities. Such interventions should facilitate development of shared perspectives among physiotherapists, carers and survivors of PA and related outcomes and provide tailored strategies to facilitate PA participation. Implications for Rehabilitation Physical activity after stroke rehabilitation is important for fitness, health, functioning and well-being. Reasons for survivors participating or not in physical activity after stroke are complex and varied. Physiotherapists and carers influence survivors’ participation in physical activity but their views about how to do this do not always match, or do they always complement the views of survivors. Integrated approaches to supporting physical activity that account for survivors’ preferences and recognise the carers’ role should be developed and applied by physiotherapists and other health professionals.