Ángela Sanjuán-Quiles

What do older people understand by mobility-related difficulties?

UNLABELLED Despite the centrality of the difficulty concept in the study of disability, there has been little research on its significance from the point of view of people with functional limitations. The main objective of this study was to describe what older people understand when asked about difficulty in undertaking mobility activities. As a secondary objective, we considered whether there are any differences depending on the type of activities, according to the International Classification of Functioning (ICF) mobility domains. METHODS Seventeen community-dwelling men and women aged 70 years old or over were interviewed by means of a questionnaire containing 55 items covering the ICF mobility domains. The participants responded to the items while thinking aloud, saying what led them to give a specific answer about their level of difficulty. Inductive content analysis was conducted and categories, subthemes and themes were identified. RESULTS Causes of difficulty (pathologies, impairments, symptoms) and accommodations (task modifications and use of aids) were the two themes identified; and their importance (and that of the subthemes included) varied across the types of activity. All the participants said that they had no difficulty in at least one task, despite mentioning changes in the way they performed them. CONCLUSIONS Older peoples opinions were consistent with theoretical models of disability and with the standard practice of measuring functional limitations by asking about the degree of difficulty; however, the design of these measures needs to be improved in order to detect perceptions of no difficulty in the presence of task modification.

Life Experiences of People Affected by Crohn’s Disease and Their Support Networks Scoping Review

This scoping review identifies and describes relevant studies related to the evidence published on life experiences and perceived social support of people affected by Crohn’s disease. Twenty-three studies were definitely selected and analyzed for the topics explored. The overall findings show patients’ needs and perceptions. There is a lack of evidence about patients’ perceived needs as well as the understanding of social support that has contributed to improve their life experiences with that chronic illness. Lack of energy, loss of body control, body image damaged due to different treatments and surgeries, symptoms related to fear of disease, feeling burdened loss related to independence, and so on are some of the concerns with having to live with those affected by the Crohn. To underline those experiences through this scoping review provides valuable data for health care teams, especially for the nursing profession, considered by those affected as one of the main roles along the whole pathological process. This review provides the basis for developing broader research on the relatively underexplored topics and consequently improves specific programs that could address patients’ needs.

Healthcare professionals’ views of the experiences of individuals living with Crohn’s Disease in Spain. A qualitative study

Crohn’s Disease (CD) in Spain lacks of a unified National Clinical Pathway and not even any early detection program and professional follow-up outpatient attention once it has been diagnosed. Little is known about the Spanish health professionals’ views of the experiences of individuals living with Crohn’s Disease nationwide and also about how the Spanish Health System faces this situation. A qualitative research method was conducted to explore this topic through in-depth interviews with eleven healthcare professionals, who represented different clinics treating people with CD from the province of Alicante (Spain). Three topics and seven sub-topics were derived from the analysis of the content emerging from the interviews. The three main topics were: the healthcare system as a hindrance for ongoing treatment of CD, the impact of the disease, support networks. The knowledge of CD gained by healthcare professionals, in the contexts studied here within, with regards to the psychosocial aspects and the experience of those living with the disease and their immediate circles, is poor, if not null on an academic level, becoming experiential on their incorporation into the professional field. Additionally, a priori, they lack the tools to address the doubts and concerns of patients from the moment of diagnosis through the ongoing care of the patient. Organizational hindrances, such as the lack of time and consensual guidelines for adequately monitoring CD patients in Alicante (Spain), further restrict the patient-professional relationship. Due to the consensus established by the National Agency regulating the contents of the Health Professions’ Education and Training across the country, we are assuming that the phenomenon highlighted may be similar in other parts of Spain. Therefore, it can be said that healthcare professionals have a limited understanding of the impact of CD on the day-to-day life of those affected, not being considered a part of the CD patients’ formal support network. Nonetheless, they are conscious of this limitation and advocate for multidisciplinary teams as the best means of attending to people living with CD. Our study outcomes may represent the first step onto identifying strategies and best practices for establishing an effective therapeutic relationship, as well as any hindering factors.