Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying.

BACKGROUND: A paucity of qualitative research on sensitive topics that focuses on participants with intellectual disabilities leaves their views unexplored. This scoping review mainly aimed to provide an overview of qualitative data collection methods used in research involving participants with intellectual disabilities to explore death and dying. METHOD: A scoping review of primary research and methodological papers published between January 2008 and March 2022 was conducted. The PRISMA-ScR checklist was followed. RESULTS: We identified 25 articles utilising four data collection methods: interviews, focus groups, the Nominal Group Technique, and participant observation. Data collection trends were identified, including accommodations for participants with intellectual disabilities, visual media used as a facilitator, and reporting of distress protocols. Most participants had mild to moderate intellectual disabilities. CONCLUSIONS: The included studies demonstrate a flexible approach that relies on the use of multiple methods. Future research must adequately report study characteristics to ensure transparency and reliability.

Perceived barriers and facilitators to good end of life care: Focusing on people with intellectual disabilities.

BACKGROUND: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. METHOD: This qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants. RESULTS: Three themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care. CONCLUSIONS: The themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population.

Identification of Classes of Functioning Trajectories and Their Predictors in Individuals With Spinal Cord Injury Attending Initial Rehabilitation in Switzerland.

OBJECTIVES: To identify classes of functioning trajectories in individuals with spinal cord injury (SCI) undergoing initial rehabilitation after injury and to examine potential predictors of class membership to inform clinical planning of the rehabilitation process. DESIGN: Longitudinal analysis of the individual's rehabilitation stay using data from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). SETTING: Initial rehabilitation in specialized centers in Switzerland. PARTICIPANTS: Individuals with newly acquired SCI (N=748; mean age, 54.66±18.38y) who completed initial rehabilitation between May 2013 and September 2019. The cohort was primarily composed of men (67.51%), persons with paraplegia (56.15%), incomplete injuries (67.51%), and traumatic etiologies (55.48%). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Functioning was operationalized with the interval-based sum score of the Spinal Cord Independence Measure version III (SCIM III). For each individual, the SCIM III sum score was assessed at up to 4 time points during rehabilitation stay. The corresponding time of assessment was recorded by the difference in days between the SCIM III assessment and admission to the rehabilitation program. RESULTS: Latent process mixed model analysis revealed 4 classes of functioning trajectories within the present sample. Class-specific predicted mean functioning trajectories describe stable high functioning (n=307; 41.04%), early functioning improvement (n=39; 5.21%), moderate functioning improvement (n=287; 38.37%), and slow functioning improvement (n=115; 15.37%), respectively. Out of 12 tested factors, multinomial logistic regression showed that age, injury level, injury severity, and ventilator assistance were robust predictors that could distinguish between identified classes of functioning trajectories in the present sample. CONCLUSIONS: The current study establishes a foundation for future research on the course of functioning of individuals with SCI in initial rehabilitation by identifying classes of functioning trajectories. This supports the development of specifically tailored rehabilitation programs and prediction models, which can be integrated into clinical rehabilitation planning.

Correction: Examining the complexity of functioning in persons with spinal cord injury attending first rehabilitation in Switzerland using structural equation modelling.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

Examining the complexity of functioning in persons with spinal cord injury attending first rehabilitation in Switzerland using structural equation modelling.

STUDY DESIGN: Cross-sectional. OBJECTIVES: To examine the associations between activities, body structures and functions, and their relationship with aetiology, age and sex in persons with spinal cord injury (SCI) at discharge from first rehabilitation. SETTING: Swiss SCI Cohort Study (SwiSCI). METHODS: The study included 390 participants with newly acquired SCI and the International Classification of Functioning, Disability and Health (ICF) as conceptual frame of reference. Body structures were represented by injury level and severity; body functions by cardiovascular, pulmonary, skin, bowel and urinary functions and pain; mental functions by anxiety, depression, optimism and self-esteem; and activities by independence in performing activities of daily living (ADL). Using structural equation modelling (SEM), indirect effects of body structures and functions on independence in performing ADL through mental functions were tested for each mental function separately. For each structural model, fit was assessed using several indices and differences in aetiology, age and sex groups were explored. RESULTS: The structural model about optimism showed good fit in all indices; the models about anxiety, depression and self-esteem showed conflicting fit indices, respectively. Within all models, effects on independence in performing ADL were mainly direct. Pain showed significant (P < 0.05) indirect effects on independence in performing ADL within the depression, optimism and self-esteem models. The model about anxiety showed differences in aetiology groups. CONCLUSIONS: Using an ICF-based modelling approach, this study presents an attempt towards a more comprehensive understanding of functioning in first rehabilitation of persons with SCI, which might be fundamental for rehabilitation planning.

Accounting for What Matters to Patients in the G-DRG System: A Stakeholder's Perspective on Integrating Functioning Information.

Functioning information constitutes a relevant component for determining patients' service needs and respective resource use. Diagnosis-Related Group (DRG) systems can be optimized by integrating functioning information. First steps toward accounting for functioning information in the German DRG (G-DRG) system have been made; yet, there is no systematic integration of functioning information. The G-DRG system is part of the health system; it is embedded in and as such dependent on various stakeholders and vested interests. This study explores the stakeholder's perspective on integrating functioning information in the G-DRG system. A qualitative interview study was conducted with national stakeholders in 4 groups of the G-DRG system (health policy, administration, development, and consultations). Interviews were analyzed using inductive thematic analysis. In total, 14 interviews were conducted (4 administration and 10 consultation group). Three main themes were identified: (1) functioning information in the G-DRG system: opportunities and obstacles, (2) general aspects concerning optimizing G-DRG systems by integrating additional information, and (3) ideas and requirements on how to proceed. The study offers insights into the opportunities and obstacles of integrating functioning information in the G-DRG system. The relevance of functioning information was evident. However, the value of functioning information for the G-DRG system was seen critically. Integrating functioning information alone does not seem to be sufficient and a systems approach is needed.

Describing Functioning in People Living With Spinal Cord Injury in Switzerland: A Graphical Modeling Approach.

OBJECTIVE: To describe functioning in people living with spinal cord injuries (SCI) in Switzerland. DESIGN: Secondary analysis of cross-sectional survey data. SETTING: Community, Switzerland. PARTICIPANTS: Individuals (N=1549) 16 years of age or older with a history of traumatic or nontraumatic SCI and permanently residing in Switzerland. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Functioning was operationalized through 4 domains: (1) impairments in body functions; (2) impairments in mental functions; (3) independence in performing activities; and (4) performance problems in participation. RESULTS: Univariate analysis indicated a high prevalence of problems in 5 areas: (1) housework; (2) climbing stairs; (3) tiredness; (4) spasticity; and (5) chronic pain. Graphical modeling showed a strong association among the four domains of functioning. Moreover, we found that the differences in the dependence structures were significant between the paraplegia SCI population and the tetraplegia SCI population. CONCLUSIONS: This study is a first study in the epidemiology of functioning of people living with SCI in Switzerland. Using univariate and graphical modeling approaches, we proposed an empirical foundation for developing hypotheses on functioning in each domain and category that could inform health systems on people's health needs.

Optimizing health system response to patient's needs: an argument for the importance of functioning information.

BACKGROUND: Current health systems are increasingly challenged to meet the needs of a growing number of patients living with chronic and often multiple health conditions. The primary outcome of care, it is argued, is not merely curing disease but also optimizing functioning over a person's life span. According to the World Health Organization, functioning can serve as foundation for a comprehensive picture of health and augment the biomedical perspective with a broader and more comprehensive picture of health as it plays out in people's lives. The crucial importance of information about patient's functioning for a well-performing health system, however, has yet to be sufficiently appreciated. METHODS: This paper argues that functioning information is fundamental in all components of health systems and enhances the capacity of health systems to optimize patients' health and health-related needs. RESULTS AND CONCLUSION: Beyond making sense of biomedical disease patterns, health systems can profit from using functioning information to improve interprofessional collaboration and achieve cross-cutting disease treatment outcomes. Implications for rehabilitation Functioning is a key health outcome for rehabilitation within health systems. Information on restoring, maintaining, and optimizing human functioning can strengthen health system response to patients' health and rehabilitative needs. Functioning information guides health systems to achieve cross-cutting health outcomes that respond to the needs of the growing number of individuals living with chronic and multiple health conditions. Accounting for individuals functioning helps to overcome fragmentation of care and to improve interprofessional collaboration across settings.

Balancing autonomy and protection: A qualitative analysis of court hearings dealing with protective measures.

Respect for individual autonomy is at the core of the Convention on the Rights of Persons with Disabilities (CRPD). However, the need to protect persons with disabilities, especially those with cognitive impairments and psychosocial conditions, from outright exploitation, violence and abuse is explicitly provided for in article 16. Legal authorities still decide on a daily basis upon the institution of measures, which aim to protect vulnerable persons and unavoidably impact on the autonomy of persons concerned, known as guardianship, curatorship or administration. Observations of court hearings, interviews with judges and analysis of written materials from the cantons of Geneva and Vaud in Switzerland as well as from Belgium - which all have differently composed authorities - were carried out in order to identify what influences authorities in decision-making processes regarding protective measures, and to explore how autonomy and protection can be balanced. We suggest pragmatic considerations that should not be ignored when trying to reach a balance between autonomy and protection from abuse, in line with the CRPD.

Setting up a cohort study on functioning: deciding what to measure.

The objectives of this article were to (1) answer the question of what to measure in a cohort study in which the main focus is the understanding of functioning over time for a specific population and to (2) describe the process of determining what to measure using a theory-informed selection of domains of functioning based on the International Classification of Functioning, Disability and Health (ICF). The Swiss Spinal Cord Injury Cohort Study, a cohort study being carried out in Switzerland for a population of persons with spinal cord injury, was used as an example. A set of domains for the Swiss Spinal Cord Injury Cohort Study was identified demonstrating the application of the methodology. This set consisted of 45 categories of the ICF. Defining what to measure using the ICF is a valuable technique for the cohort researcher because it guarantees comparability of data and comprehensiveness of scope, enhancing the prospects of the study results being understood and is consequently used by health professionals as well as in other contexts, such as in health and social policy.

Capturing the psychologic-personal perspective in spinal cord injury.

OBJECTIVE: The overall objective of this study was to illustrate a systematic approach for capturing the psychologic-personal perspective in International Classification of Functioning, Disability and Health-based comprehensive research on spinal cord injury (SCI) in terms of what and how to measure. The specific aims were to identify (1) relevant areas of research for capturing the psychologic-personal factors in a study that is planned and conceptualized according to the comprehensive context of the International Classification of Functioning, Disability and Health, using SCI as a case in point; (2) a set of domains relevant for SCI research from a psychologic-personal perspective; and (3) suitable measurement instruments that can be considered for the assessment of those identified domains based on a set of predefined guiding principles. DESIGN: The psychologic-personal factor structure was developed based on an item pool of 1246 entries from secondary analyses of available data from SCI studies. The domain set for psychologic-personal factors was identified through reviewing the scientific literature in PubMed and PsycInfo. The set of measurement instruments was collected using available measurement reviews, searches in the literature, instrument databases, and further sources and was selected using guiding principles. RESULTS: Forty specific psychologic-personal factors, subdivided into seven areas of research, were identified: (1) sociodemographic personal characteristics, (2) the position in the immediate social and physical context, (3) personal history and biography, (4) feelings, (5) thoughts and beliefs, (6) motives, and (7) patterns of experience and behavior. The psychologic-personal factors domain set contains both cross-cutting outcome domains, namely quality-of-life, life satisfaction, subjective well-being, and sociodemographic personal characteristics, life events, positive and negative affect, perceived stress, locus of control, self-efficacy, purpose in life, coping, lifestyle, and personality. For each of the identified domains, a pool of measurement instruments was listed, and the application of predefined guiding principles for measurement instrument selection was exemplified for self-efficacy. It resulted in the selection of the General Self-Efficacy Scale by Schwarzer and Jerusalem (Measures in Health Psychology: A User's Portfolio. Causal and Control Beliefs. pp. 35-37; 1995). CONCLUSIONS: The results of the current article contributed to creating a transparent protocol for the Swiss Spinal Cord Injury Cohort study, coordinated by the Swiss Paraplegic Research in Nottwil, Switzerland. This article also stresses the relevance of the comprehensive approach to SCI and the consideration of the psychologic-personal perspective in this approach. The study, therefore, hopes to encourage scientists to use the International Classification of Functioning, Disability and Health and the psychologic-personal perspective as a frame of reference for their research. Furthermore, the research reported in this article can inform the World Health Organization's future development of the personal factors classification in the International Classification of Functioning, Disability and Health.

Monitoring the United Nation's Convention on the Rights of Persons with Disabilities: data and the International Classification of Functioning, Disability and Health.

This paper approaches the general issue of the complex challenges in the relationship between those who generate data--researchers, scientists, and state statistical offices--and those who use data--researchers and policy-makers--in light of the more specific policy challenges created by the monitoring requirement of the United Nation's Convention on the Rights of Persons with Disabilities (CRPD: Article 33). International Conventions and Treaties standardly suffer from being persistently ineffectual primarily because of the absence of implementation mechanisms. The CRPD, by contrast, explicitly requires State Parties who have ratified it to institute data generation and monitoring mechanisms for its implementation. This paper argues that WHO's International Classification of Functioning, Disability and Health (ICF) can be brought into the service of the CRPD data generation and monitoring mandate, both in the shaping of relevant data streams and in the creation of relevant indicators, and concludes by reviewing the challenges that remain.

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.

Explaining functioning outcomes across musculoskeletal conditions: a multilevel modelling approach.

PURPOSE: To determine whether changes in health outcomes result from changes in domains of functioning and relevant environmental factors in musculoskeletal conditions. METHOD: Longitudinal observational study on a convenience sample of 291 patients with low back pain, osteoarthritis, osteoporosis, rheumatoid arthritis and chronic widespread pain. The study was part of the MHADIE project. Data collection was performed at baseline, after 4 and 8 weeks using the ICF Core Sets for the corresponding musculoskeletal conditions. Multilevel models for change were used to determine which ICF categories explain the variability and change over time of the general, physical and mental health according to the SF-36. RESULTS: There are only small fluctuations in the health outcomes. These are related to functions of the locomotor apparatus, such as muscle power, and to activities and participation domains related to them, such as lifting and carrying objects. A large amount of baseline variance is explained with a relatively small number of ICF categories of functioning. CONCLUSIONS: This study presents a list of functioning problems and environmental factors relevant to map out both the patterns and the variations in the experience of living with a chronic and painful condition. These are intervention targets common across MSC conditions.

Chapter 3: International non-governmental organizations in the emerging world society: the example of ISPRM.

Using the International Society of Physical and Rehabilitation Medicine (ISPRM) as a case in point, the paper describes the complex world societal situation within which non-governmental organizations that address health issues have to operate.This paper describes the complex world societal situation within which non-governmental organizations (NGOs), that are addressing health issues have to operate. In particular, as an international organization in official relation with the World Health Organization (WHO), ISPRM is confronted with a variety of responsibilities and a true world health political mandate. The accompanying rights need to be played out in relation to its own internal member organization and external allies. The theory of the world society and the current situation are briefly reviewed. The role of international NGOs within the world health polity, rehabilitation and Physical and Rehabilitation Medicine (PRM) is highlighted, whilst special emphasis is placed on NGOs in official relation with WHO. Functions, dysfunctions and challenges of international NGOs operating in the health sector are discussed. Against this background, key approaches to enhance ISPRM's political role are analysed. These include transparent and accountable development of the organization, the differentiation between internal and external policy relations, the harmonization of organizational structures and procedures, the consequential use of political structures available to influence WHO's agenda, and the identification of other policy players of major relevance to PRM in order to build strategic alliances with external partners and to enhance ISPRM's membership base.

Chapter 4: A policy process and tools for international non-governmental organizations in the health sector using ISPRM as a case in point.

The politics of international non-governmental organizations (NGOs) such as the International Society of Physical and Rehabilitation Medicine (ISPRM) serve the function of selecting and attaining particular socially valued goals. The selection and attainment of goals as the primary function of political action can be structured along a policy process or cycle comprising the stages of strategic goal setting and planning of strategic pathways, agenda setting, resource mobilization, implementation, evaluation and innovation. At the various stages of this policy process different policy tools or instruments, which can be used to influence citizen and organizational behaviour in the light of defined goals, can be applied. The objective of this paper is to introduce and describe policy tools of potential relevance to ISPRM with regard to different policy functions and stages of the policy process.

Chapter 5: Organizational structures suited to ISPRM's evolving role as an international non-governmental organization in official relation with the world health organization.

International non-governmental organizations (NGOs) in official relation with the World Health Organization (WHO) face organizational challenges against the background of legitimate representation of their membership and accountable procedures within the organization. Moreover, challenges arise in the light of such an international NGO's civil societal mandate to help reach the "health-for-all" goals as defined by WHO and to facilitate the implementation of the United Nations (UN) Convention on the Rights of Persons with Disabilities. The objective of this paper is to examine how such an international NGO using the International Society of Physical and Rehabilitation Medicine (ISPRM) as a case in point can address these challenges. The specific aims are to analyse ISPRM's structures and procedures of internal organs and external relations and to develop solutions. These possible solutions will be presented as internal organizational scenarios and a yearly schedule of meetings closely aligned to that of WHO to facilitate an efficient internal and external interaction.