Assessing disability : the reliability and validity of the multiple sclerosis disability profile

The assessment of people with disabilities is complex. The priorities adopted and issues addressed vary. The Multiple Sclerosis Disability Profile was developed and is currently used to assess people with MS in Australia. However, little is known about its psychometric properties and people with MS have not had a previous opportunity to comment on its relevance to them. Therefore the reliability and validity of the Disability Profile was assessed using widely used assessment methods and the views of people with MS. Standard methods for assessing the characteristics of assessment scales were used and one hundred and three people with MS were asked to nominate important issues that need discussing when assessing the person with MS. Support people and health professionals provided additional views. The research was conducted from a theoretical perspective that considers the relationship between disability and citizenship. The internal consistency of the Disability Profile was found to be excellent (Cronbach's Alpha= 0.9656). Furthermore it was found that the inter-rater reliability of the Multiple Sclerosis Disability Profile can be improved with clearer operational definitions, increased training for health professionals in the use of the instrument and reduced number of responses per item. Moreover the assessment of disability needs to be improved to achieve more sensitivity and to incorporate the handicap score devised in the course of this study. These amendments will enable improved discrimination when assessing handicap. However further research is required to assess the reliability and validity of the amended instrument. As the Disability Profile is a starting point for assessment, therapy and support for the person with MS, the revisions proposed here offer health professionals a holistic assessment instrument with acceptable reliability and viability

A comparative study of aspects of health care valued by residents with multiple sclerosis and staff at a residential setting

This research was undertaken in response to the implementation of a program of de-institutionalisation under the auspices of the Disability Services Act 1986, involving people with Multiple Sclerosis {MS) . The impact of de-institutionalisation on people with MS has not been researched before in Australia. The aim of the research was to identify and compare aspects of health care valued by people with Multiple Sclerosis and staff at an assisted accommodation unit in suburban Australia. The research participants included the residents and staff of a residential centre for people with MS. Elements of quantitative and qualitative research methods were used. Data were collected using unstructured interviews and sequential questionnaires. These data were analysed using recurrent theme identification technique. The research shows that the current program of deinstitutionalisation has resulted in changes affecting both residents and staff. The findings of the research were similar for both groups, who wish to see the Centre remain as much as possible as it is, with in-house services continued. Changes resulting in the abolition or reduction of services are not supported by either group. While the overall objectives of the Disability Services Act 1986 are supported by residents and staff, the major conclusion of the study is that its implementation should more closely reflect the needs of people with MS already living in an assisted accommodation unit

The impact of care practices and health demographics on the prevalence of skin tears and pressure injuries in aged care

To determine whether differences in care practices and demographics between two long-term aged care facilities affected the incidence of residents' skin wounds.A retrospective analysis of care plans and clinical outcomes was conducted for a six month period in 2016 at two aged care facilities, N=39 Home 1 and N=45 Home 2. Skin tears, pressure injuries and usual care practices and associated health demographics were recorded.Over the six month period, 84 residents were found to have a total of 206 aged care acquired skin wounds (skin tears, pressure injuries, haematomas, rashes, infections). The frequency of skin tears or total wounds did not differ between the homes. Several factors were identified that influenced the skin wounds. A reduction in skin tears was associated with the use of heel protectors and antiembolic stockings, whilst a diagnosis of vascular dementia was associated with increased prevalence of skin wounds. Pressure injuries were significantly higher at Home 2. Increased use of strategies to moderate risk activities, such as tray tables and bed rails, and impaired cognitive function were associated with higher pressure injury prevalence.A number of care factors and health demographics influenced the rate of skin wounds. A holistic approach to skin management is needed.Practices, such as repositioning and skin hygiene, are well known to reduce the incidence of pressure injuries and skin tears; however there are other care practices that take place in homes as part of usual care that also impact skin wounds that have been largely ignored. This paper highlights those care practices, as well as resident characteristics and comorbidities that may increase the risk of skin wounds, requiring further monitoring/mitigating strategies. This article is protected by copyright. All rights reserved

Loneliness in Old Age: Interventions to Curb Loneliness in Long-Term Care Facilities

Presently there is little analytical research examining practical interventions to address loneliness in long-term aged care. Thus, a review of the literature was conducted to identify and examine the usefulness of current interventions. A broad range of activities were found to benefit lonely residents. Animal-assisted therapy was the most widely implemented strategy and was both appropriate and effective for cognitively impaired and nonimpaired residents. Collaborative group approaches to improve cognitive aging were highly beneficial to residents as was indoor gardening, group use of game consoles and increased social contact with family or friends mediated via videoconferencing. Continued innovation and adaptation of practices to provide stimulation and increase social connectedness are needed, in conjunction with rigorous research methodologies, to determine effectiveness and appropriateness of those interventions to reduce loneliness for residents in long-term care facilities

Illness and demographic correlates of chronic pain among a community-based sample of people with multiple sclerosis

Objective: To investigate the prevalence, nature, and correlates of pain among a community-based sample of people with multiple sclerosis (MS).\ud Design: Cross-sectional survey and structured pain interview.\ud Setting: Community.\ud Participants: Two hundred and nineteen people with MS recruited via systematic sampling from a randomly ordered MS society membership database.\ud Intervention: Not applicable.\ud Main Outcome Measures: Pain presence or absence, pain intensity (numerical rating scales), pain quality (McGill Pain Questionnaire), pain location(s) and extent (pain drawing), pain duration and frequency, provoking and relieving pain factors, and pain management techniques.\ud Results: Pain was found to be common with some 67.1% of the sample reporting pain during the two weeks preceding the study. Comprehensive pain assessment revealed that a substantial subset of these individuals experience chronic pain conditions characterised by moderate-to-severe pain intensity. Among those with pain, three-quarters reported pain in 3 or more locations, with participants reporting an average of 4.0 (SD = 1.8) distinct pain sites. Women and individuals with more severe MS-related disability were significantly more likely to report both the presence of pain and greater pain intensity. In contrast, being in a married/defacto relationship and longer time since MS diagnosis were significantly associated with lower pain intensity.\ud Conclusion: Given the high prevalence and nature of pain experienced by people with MS, health care providers need to approach pain with a similar priority given to other MS-related problems such as mobility and functional independence. Women and individuals with more severe MS-related disability appear to be at particular risk for significant pain problems and therefore these groups warrant particular attention, such that routine clinical assessment should trigger routine pain assessment

Understanding chronic pain complicating disability: Finding meaning through focus group methodology

While extensive literature exists on the experiences of people living with chronic non-malignant pain as a primary condition, little is known about the phenomenon of pain as it is experienced by the person with a chronic disabling condition. This focus group study explored the experience of disability-related pain among 32 people with multiple sclerosis (MS) living in the community. Thematic analysis of transcripts revealed four broad conceptualizations of the experience of living with chronic MS-related pain. The first theme, pain is pervasive, described the overwhelming and intrusive presence of pain in daily life. Participants related the physical, emotional and social consequences of living with chronic disability-related pain, which caused them great loss and restriction. The second theme resonated around feelings that nobody understands. The participants sought understanding and validation of their pain experiences by family, friends and health care professionals and struggled with difficult issues concerning the legitimacy and invisibility of their pain. The third theme, I’m fine, referred to the propensity of participants to keep pain private from others. In part because of its contested nature, participants at times concealed pain from others in order to avoid conflict and maintain some semblance of their former lives. Always a factor in the equation emerged as the final theme. The participants shared how MS had transformed their worlds into ones in which pain and discomfort had become a normal part of everyday life, requiring careful negotiation and planning in order to undertake activities and prevent exacerbation. It is vital for health care providers to give opportunities for people with MS to talk about pain and pain-related concerns, validate their experiences, and provide interventions that enable self-management. Clinicians are encouraged to challenge their own meanings and expectations about disability-related pain so that opportunities for therapeutic intervention can be facilitated

Biopsychosocial Correlates of Adjustment to Pain Among People With Multiple Sclerosis

Objectives: \ud The objective of this study was to examine the extent to which pain-related beliefs and coping strategies predicted measures of adjustment to pain among people with multiple sclerosis (MS), over and above that accomplished by demographic and clinical variables.\ud \ud Methods: \ud Participants were a community-based sample of people with chronic MS-related pain (N = 105) who completed postal surveys and standardised interviews that included measures of demographic and MS-related variables, typical pain intensity, psychological functioning, pain interference, pain beliefs and coping strategies. \ud \ud Results: \ud Pain-specific beliefs and coping strategies were associated with and explained a significant proportion of the variance in adjustment to pain (24−34%) among people with MS, over and above that accomplished by demographic and disease-related variables and pain intensity. Compatible with previous studies, greater endorsement of pain constancy and catastrophizing were significant predictors of poorer adjustment, whereas perceived ability to decrease pain and increasing behavioural activities in response to pain were related to positive adaptation.\ud \ud Discussion: \ud These findings provide support for the premise that psychosocial factors remain central in disability-related pain and suggest the possibility that interventions targeting these variables would reduce the negative impact of pain among people with MS

Understanding chronic pain complicating disability: Finding meaning through focus group methodology

Over the past few decades a major paradigm shift has occurred in the conceptualisation of chronic pain as a complex multidimensional phenomenon. Yet, pain experienced by individuals with a primary disability continues to be understood largely from a traditional biomedical model, despite its inherent limitations. This is reflected in the body of literature on the topic that is primarily driven by positivist assumptions and the search for etiologic pain mechanisms. Conversely, little is known about the experiences of and meanings attributed to, disability-related pain. Thus the purpose of this paper is to discuss the use of focus group methodology in elucidating the meanings and experiences of this population. Here, a distinction is made between the method of the focus group and focus group research as methodology. Typically, the focus group is presented as a seemingly atheoretical method of research. Drawing on research undertaken on the impact of chronic pain in people with multiple sclerosis, this paper seeks to theorise the focus group in arguing the methodological congruence of focus group research and the study of pain experience. It is argued that the contributions of group interaction and shared experiences in focus group discussions produce data and insights less accessible through more structured research methods. It is concluded that a biopsychosocial perspective of chronic pain may only ever be appreciated when the person-in-context is the unit of investigation

Accessing care summaries at point-of-care: implementation of mobile devices for personal carers in aged care

Continued development of mobile technology now allows access to information at the point-of-care. This study was conducted to evaluate the use of one such tool on a mobile device, from the carer perspective. Caregivers across 12 aged-care facilities were supplied mobile devices to access a Picture Care Plan (PCP), a specific tool designed around the role of the personal carer. An anonymous questionnaire was subsequently completed by 85 carers with questions relating to participants' experience. Perceived helpfulness of the PCP at the point-of-care was high (87%). A significant number of participants believed the use of the PCP increased resident safety and quality of care (76%). Practical components related to the carrying of the device, network speed and the requirement to maintain communication with senior members of staff to ascertain updates were also expressed by participants. Findings suggest that staff are receptive to adoption of mobile devices to access care directives at the point-of-care and that the technology is useful