Jerome Bickenbach

Searching for an Operational Definition of Frailty: A Delphi Method Based Consensus Statement. The Frailty Operative Definition-Consensus Conference Project

BACKGROUND There is no consensus regarding the definition of frailty for clinical uses. METHODS A modified Delphi process was used to attempt to achieve consensus definition. Experts were selected from different fields and organized into five Focus Groups. A questionnaire was developed and sent to experts in the area of frailty. Responses and comments were analyzed using a pre-established strategy. Statements with an agreement more than or equal to 80% were accepted. RESULTS Overall, 44% of the statements regarding the concept of frailty and 18% of the statements regarding diagnostic criteria were accepted. There was consensus on the value of screening for frailty and about the identification of six domains of frailty for inclusion in a clinical definition, but no agreement was reached concerning a specific set of clinical/laboratory biomarkers useful for diagnosis. CONCLUSIONS There is agreement on the usefulness of defining frailty in clinical settings as well as on its main dimensions. However, additional research is needed before an operative definition of frailty can be established.

The International Classification of Functioning, Disability and Health: a new tool for understanding disability and health

Reliable and timely information about the health of populations is part of the World Health Organizations mandate in the development of international public health policy. To capture data concerning functioning and disability, or non-fatal health outcomes, WHO has recently published the revised International Classification of Functioning, Disability and Health (ICF). In this article, the authors briefly outline the revision process and discuss the rationale for the ICF and the needs that it serves in rehabilitation. The ICF is shown to be an essential tool for identifying and measuring efficacy and effectiveness of rehabilitation services, both through functional profiling and intervention targeting. Existing applications of the ICF in rehabilitation are then surveyed. The ICF, in short, offers an international, scientific tool for understanding human functioning and disability for clinical, research, policy development and a range of other public health uses.

The Personal Factors of the International Classification of Functioning, Disability and Health in the literature - a systematic review and content analysis.

Purpose. This review provides an overview of the literature on the conceptualisation of the Personal Factors (PF) component of the International Classification of Functioning, Disability and Health (ICF). Method. A systematic literature review was carried out. Electronic searches were performed in Pubmed, Embase, PsycINFO, CINAHL and SSCI. Qualitative content analysis of statements about PF was conducted using inductive coding. Results. The searches yielded 353 citations, 79 papers were eligible for analyses. Five hundred thirty-eight statements about PF were extracted, condensed and coded. Beside conceptual statements, 238 examples of potential PF as well as five attempts at classifying PF were found in the literature. PF were considered in relation to clinical service provision, assessment and intervention, in research and social security contexts. PF were seen to be related to various aspects of health, functioning, disability and the environment. Conclusions. The analysis of the literature shows that PF is seen as relevant to the application of the ICF in various settings. The review revealed a need for standardisation of PF. The literature points to the potential of PF in enhancing the understanding of functioning, disability and health, in facilitating interventions and services for people with disabilities, and strengthening the perspective of individuals in the ICF.

Changes in Spiritual Beliefs After Traumatic Disability

OBJECTIVES To discover the effect of sudden-onset disability on spirituality, specifically, to investigate changes following the onset of disability in spiritual concepts and to outline a theoretical framework consisting of relationships with the self, others, the world, and a supreme power. STUDY DESIGN The study used a cross-sectional, qualitative approach to understand changes in spirituality from the perspective of the disabled person. Intensive semistructured interviews were conducted with 16 participants, each of whom had either a spinal cord injury or brain injury, within the 2-year period after discharge from rehabilitation. Changes in spiritual concepts were explored in relation to 3 types of relationships (intrapersonal, interpersonal, and transpersonal) and 5 themes (awareness, closeness, trust, purpose, and vulnerability). RESULTS Specific changes in spirituality described by sample members were: greater awareness of the self; a change in their view of their own independence; a sense of purpose in life that was not present before the onset of the disability; greater awareness of their own mortality and vulnerability; a new understanding of trust, especially when depending on others; loss of some significant relationships; greater appreciation and closeness with others and the world; and greater understanding of other disadvantaged groups. CONCLUSIONS The interviews portrayed a significant ability to conceptualize issues in a spiritual context in the 2-year period after discharge from rehabilitation. Further, the changes reported suggest a positive effect of spirituality in the adjustment period following onset.

Disability and schizophrenia: a systematic review of experienced psychosocial difficulties

BackgroundSchizophrenia is a significantly disabling disease that affects all major areas of life. There is a lack of comprehensive synthesis of research findings on the full extent of psychosocial difficulties (PSDs) experienced by people living with schizophrenia. This paper provides a systematic review of the literature concerning PSDs and their associated factors in schizophrenia. PSDs were conceptualized in accordance with the International Classification of Functioning, Disability and Health (ICF) as disabilities, in particular impairments of mental functions, activity limitations and participation restrictions.MethodsAn electronic search using MEDLINE and PsychINFO plus a manual search of the literature was performed for qualitative and longitudinal studies published in English between 2005 and 2010 that examined PSDs in persons with schizophrenia. The ICF was used as a conceptual framework.ResultsA total of 104 papers were included. The most frequent PSDs addressed in the literature were not specific ones, directly linkable to the ICF categories of mental functions, activity limitations or participation restrictions, but broad areas of psychosocial functioning, such as psychopathological symptoms (53% of papers) or global disability and functioning (37%). Among mental functions, the most extensively studied were cognitive functions (27%) and emotional functions (27%). Within the domain of activities and participation, the most widely investigated were difficulties in relationships with others (31%) and employment (20%). Of the factors associated with the intensity or course of PSDs, the most commonly identified were treatment modalities (56%), psychopathological symptoms (26%), and socio-demographic variables (24%). Medication tended to improve the most relevant PSD, but at the same time was the only consistently reported determinant of onset of PSDs (emerging as unwanted side-effects).ConclusionsThe present review illustrates the remarkably broad scope and diversity of psychosocial areas affected in schizophrenia and shows how these areas are interconnected and how they interact with contextual factors. The need for a shift in focus of schizophrenia research is suggested – from an excessive reliance on global measures of psychopathology and disability for defining outcomes to the creation of profiles of specific PSDs that have a more direct bearing on the disabling experience and real-world functioning of patients and can serve to guide interventions and monitoring over time.

ROAMER: roadmap for mental health research in Europe.

Despite the high impact of mental disorders in society, European mental health research is at a critical situation with a relatively low level of funding, and few advances been achieved during the last decade. The development of coordinated research policies and integrated research networks in mental health is lagging behind other disciplines in Europe, resulting in lower degree of cooperation and scientific impact.

Disability, culture and the UN convention

Is the universality of human rights, such as those set out in the United Nations Convention on the Rights of Persons with Disabilities, incompatible with therapeutic strategies of respecting cultural differences? I show that universalism is essential to the notion of human rights, as well as the rarely explained, political slogan of ‘the rights approach to disability’. Similarly, culture responsiveness is commonly defended by therapists. I argue that the conflict between universalism of rights and cultural sensitivity exist only if these positions are expressed in extreme form: rights absolutism and cultural relativity. If more sensibly spelled out – in the form of progressive realisation of rights and situational sensitivity of difference – there is no conflict at all. Indeed, these more reasonable positions are mutually supportive. I conclude that, given resource and other constraints, the realisation of human rights will always be a matter of political negotiation, and that a social commitment to equality demands that we ensure that only transparent, fully-informed and fully-participatory procedures, respectful of difference [are employed]. These principles should guide us when we have to make hard choices in the implementation of human rights.

The World Report on Disability

The World Report on Disability, a joint endeavor of the World Health Organization and the World Bank, launched in June 2011, is an astonishing achievement that will set the standard for disability studies research for evidence-informed policy for years to come. The product of collaborative and participatory work between organizations of persons with disabilities, academics and social and health professionals and policy-makers, the Report is governed by a commitment to the best available evidence and the widest scope of policy domains, types of disability and voices from low, medium and high resource countries of the world. The Report’s recommendations are both topic-focused and cross-cutting, and are supplemented with actions that operationalize the recommendations in ways that are both progressive and feasible to implement. In the end, the Report can plausibly claim, as it does, that it is providing the evidence and analysis needed to facilitate the implementation of the United Nations Convention on the Rights of Persons with Disabilities.

Training on the international classification of functioning, disability and health (ICF) : the ICF-DIN basic and the ICF-DIN advanced course developed by the disability italian network

The objective is to present training on the International Classification of Functioning, Disability and Health (ICF) prepared by the Disability Italian Network (DIN) and to present strategies of ICF dissemination in Italy. A description of DIN’s training methodology, prepared in collaboration with World Health Organization (WHO) experts, is provided within its practical applications in health, labour, rehabilitation and statistical sectors. The ICF–DIN Basic Course is eight hours long and focuses on ICF basic principles, structure and application in different settings. The ICF–DIN Advanced Course, three days long followed by three months of distance learning, assumes Basic Course completion, and focuses also on ICF–checklist’s coding and WHO–DAS II administration. The first training courses’ outcomes, held in Italy and addressed to health, social and labour professionals, are provided. The feedback received by participants at the end of the courses showed that the main mistake they made was to consider ICF as an assessment instrument. The ICF–DIN training course was crucial in explaining the correct use of the ICF as a classification and to show its impact and usefulness on daily practice, particularly in multidisciplinary teams. The ICF–DIN courses already carried out in Italy show that this teaching methodology teaches how to avoid incomplete applications, simplification and misunderstanding of ICF’s complexity.

Spiritual issues associated with traumatic-onset disability

Purpose : The present study used a qualitative approach to discover the concepts used by people with a sudden-onset disability to express issues of spirituality. Using a crosssectional time frame, the study sought to understand how spiritual issues were experienced at the onset of a disability from the perspective of the disabled person him or herself. The study also compared the perceptions of brain injury respondents to spinal cord injury respondents. Method : The qualitative approach was chosen to capture a detailed understanding of perceptions about spirituality, and the relationship of the disability to the disabled persons spiritual beliefs. The sample consisted of 16 individuals, all of whom had experienced a spinal cord injury or a brain injury. Results : The main findings of the study were as follows: (1) Participants recovering from a disability described spiritual issues relating to five themes which arose directly from the data (awareness, closeness, trust, purpose, vulnerability) and relating to three relationships found throughout the literature on spirituality (intrapersonal, interpersonal and transpersonal). These eight dimensions can be combined to form a matrix, which serves as a framework for considering spiritual issues associated with disability; and (2) There were differences in the spiritual concepts described by the participants with brain injury compared to those with spinal cord injury. In particular, those with brain injuries seemed to place greater emphasis on the importance of their families, and to be more aware of the need for trust in view of their memory deficits. Conclusions : These results represent one of the earliest attempts to take an empirical approach to the development of theory in the area of spirituality and disability. Building on theory developed in other populations (palliative care and ageing), the study offers a theoretical model for clinicians, educators and researchers to better understand spirituality in the context of disability.