Manuel Lillo-Crespo

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.

Tackling perinatal loss, a participatory action research approach: research protocol

AIM   The aim of this study was to promote changes to improve the care provided to parents who have experienced a perinatal loss through participatory action research. BACKGROUND   The birth of a child is a joyful event for most families, however, unfortunately some pregnancies end in loss. Perinatal loss creates a heavy emotional impact not only on parents but also on health professionals, where in most cases there is an evident lack of skills, strategies and resources to cope with these kinds of situations. DESIGN   Participatory action research is the methodology proposed to achieve the purpose of this study. METHODS   Participatory action research consists of five stages: outreach and awareness, induction, interaction, implementation and systematization. The working group will include professionals from the Mother and Child Unit for patients at a tertiary level public hospital in Spain. The duration of the study will be 3 years since the approval of the protocol in January 2011. The qualitative techniques used will include group dynamics such as the SWOT analysis the nominal group technique, focus groups and brainstorming, among others that will be recorded and transcribed, generating reports throughout the evolution of the group sessions and about the consensus reached. Content analysis will be conducted on the field diaries kept by the participants and researchers. This project has been funded by the Andalusian Regional Ministry of Health. DISCUSSION   Participatory action research is a methodological strategy that allows changes in clinical practice to conduct a comprehensive transformative action in the care process for perinatal loss.

Understanding life experiences of people affected by Crohn's disease in Spain. A phenomenological approach

BACKGROUND AND OBJECTIVES People affected by Crohns disease must adapt their lives to their new chronic condition, and therefore, understanding such experience can be helpful in planning effective interventions for the affected ones. The aim of this study was to gain an insight into such experience and how they adapted in different areas of their lives, particularly in a family-centred culture such as the Spanish one. METHOD A descriptive phenomenological study was conducted through in-depth interviews to 19 people diagnosed of Crohns disease in the province of Alicante (Spain). Once the interviews were transcribed, data were analysed using Colaizzis seven-step method. RESULTS Five emergent themes were identified: self-protection against the unknown cause; self-training; learning to live with Crohns disease; perceived losses associated to Crohns disease; and relationship with others. The results portrayed a chronically ill patient who is unconscious about the chronicity and consequently must develop strategies to keep living a similar life like the one lived before. CONCLUSIONS This study revealed that people affected by Crohns disease struggle with the fact of being a chronic patient with uncertainty about the illness and need to learn living with a chronic condition that limits their daily lives. Furthermore, the lack of Crohns disease a professional in charge of these peoples Cares such as the specific nursing role existing in other countries support in the Spanish Health System determines the loneliness those diagnosed experience to cope with the new situation.

The development of a consensus definition for healthcare improvement science (HIS) in seven European countries: A consensus methods approach

Abstract Introduction There is a limited body of research in the field of healthcare improvement science (HIS). Quality improvement and ‘change making’ should become an intrinsic part of everyone’s job, every day in all parts of the healthcare system. The lack of theoretical grounding may partly explain the minimal transfer of health research into health policy. Methods This article seeks to present the development of the definition for healthcare improvement science. A consensus method approach was adopted with a two-stage Delphi process, expert panel and consensus group techniques. A total of 18 participants were involved in the expert panel and consensus group, and 153 answers were analysed as a part of the Delphi survey. Participants were researchers, educators and healthcare professionals from Scotland, Slovenia, Spain, Italy, England, Poland, and Romania. Results A high level of consensus was achieved for the broad definition in the 2nd Delphi iteration (86%). The final definition was agreed on by the consensus group: ‘Healthcare improvement science is the generation of knowledge to cultivate change and deliver person-centred care that is safe, effective, efficient, equitable and timely. It improves patient outcomes, health system performance and population health.’ Conclusions The process of developing a consensus definition revealed different understandings of healthcare improvement science between the participants. Having a shared consensus definition of healthcare improvement science is an important step forward, bringing about a common understanding in order to advance the professional education and practice of healthcare improvement science.

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.

Case Study: Culturally Competent Strategies Toward Living Well with Dementia on the Mediterranean Coast

Barbara is a 65-year-old Scottish woman who arrived in Spain with her husband John and two pet dogs. They planned to permanently live in a rural area on the Mediterranean Coast, which has been traditionally selected by the retired elderly population from Central and Northern European countries as a place to live when they are still active and healthy. The Scottish middle-income couple were retired in an urban Scottish area for 1 year before relocating. They then decided to move to the sunny coastal area of Southeast Spain, investing their life savings in a country house in the village where they vacationed every year. For them Spain was an affordable country where their savings would be worth more; it had a lower cost of living and a higher quality of life and was perceived as a safe place to live. They had even heard from other expats that healthcare costs were assumed by the Spanish government, and healthcare was considered as high quality as any in Europe. They settled in the countryside with their pets, in a rural area with 1100 inhabitants, with widely separated properties. There were no other foreign residents living nearby. The nearest British Community was in a big town by the sea where the only British Expats’ Association was located.

From home care to care home: a phenomenological case study approach to examining the transition of older people to long-term care in Spain

Background and Aims It has been the tradition in Spain until recently for families to take care of their own older relatives, but this is now changing, especially in urban areas where caring roles are also shifting. This study aims to examine the Spanish care transitions of older people moving from being traditionally a family-centred and gender-based cultural phenomenon to one that is moving gradually into professional care settings. Method A phenomenological case study approach was adopted, involving 15 cases exemplifying the care experience in typical primary care settings in one region of Spain, and examined how the transition from home care is happening. In-depth interviews with older people and carers with lived experience regarding the phenomenon took place. Results Seven themes were identified portraying the current picture of the phenomenon, evidencing that care of older people is still culturally assumed as family-centred care and a gender-based responsibility, care homes have a negative social image, there are differences between rural and urban areas, there is a lack of training for professional and family carers, and family income and dependency level accelerate the transition. Conclusions This study revealed a lack of care services for older people in Spain, inconsistencies in service provision, as well as a lack of professional and non-professional training.

Experiences of advanced dementia care in seven European countries: implications for educating the workforce

ABSTRACT Background: There is a paucity of robust research concerning the care experiences of peoplewith advanced dementia within Europe. It is essential to understand these experiences if weare to address care inequalities and create impactful dementia policies to improve servicesthat support individuals and enable family caring. Objectives: To identify the strengths and weaknesses in daily life perceived by people with dementia and family caring across Europe by exemplifying experiences and the range of typical care settings for advanced dementia care in seven partner countries. Methods: Twenty two in-depth qualitative case studies were completed in seven European countries across a range of care settings considered typical within that country. Narrative accounts of care illuminated a unique set of experiences and highlighted what was working well (strengths or positive aspects) and not so well (weaknesses or negative aspects) for people with advanced dementia and family caring. A constant comparative method of analysis through thematic synthesis was used to identify the common themes. Results: Eight key themes were identified; Early diagnosis, good coordination between service providers, future planning, support and education for carers, enabling the person with dementia to live thebest life possible and education on advanced dementia for professional and family caregiverswere all significant and recurring issues considered important for care experiences to bepositive. Conclusion: People with advanced dementia may have limited opportunities for self-realization and become increasingly reliant on the support of others to maximize their health and well-being. Careful attention must be given to their psychosocial well-being, living environment and family caring to enable them to live the best life possible. Building on what the case studies tell us about what works well, we discuss the potential for integrating the findings into interprofesional learning solutions for the professional workforce across Europe to champion practice-based change.

Developing a framework for evaluating the impact of Healthcare Improvement Science Education across Europe: a qualitative study

Purpose Frontline healthcare professionals are well positioned to improve the systems in which they work. Educational curricula, however, have not always equipped healthcare professionals with the skills or knowledge to implement and evaluate improvements. It is important to have a robust and standardized framework in order to evaluate the impact of such education in terms of improvement, both within and across European countries. The results of such evaluations will enhance the further development and delivery of healthcare improvement science (HIS) education. We aimed to describe the development and piloting of a framework for prospectively evaluating the impact of HIS education and learning. Methods The evaluation framework was designed collaboratively and piloted in 7 European countries following a qualitative methodology. The present study used mixed methods to gather data from students and educators. The framework took the Kirkpatrick model of evaluation as a theoretical reference. Results The framework was found to be feasible and acceptable for use across differing European higher education contexts according to the pilot study and the participants’ consensus. It can be used effectively to evaluate and develop HIS education across European higher education institutions. Conclusion We offer a new evaluation framework to capture the impact of HIS education. The implementation of this tool has the potential to facilitate the continuous development of HIS education.