Aim: To explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease.Background: Resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting.Design: A qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ.Methods: Individual semi‐structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta‐ethnographic approach was used to analyse and synthesise cross‐national findings.Results: Forty‐seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub‐themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well‐being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management.Conclusions: An integrated and person‐and‐community‐centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long‐term conditions.Patient or Public Contribution: The Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings.Relevance to Clinical Practice: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson’ disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journey.

Background: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long‐term conditions such as Parkinson's disease.Objective: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships.Methods: A mixed‐methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta‐ethnography approach was used to analyse and synthesize cross‐national findings.Results: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services.Conclusions: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory.Patient or Public Contribution: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings.

Background: The technological advances of medicine, and specifically the techniques of organ transplants, have allowed crossing the border of life and death. This is especially relevant in the case of heart transplant, since its symbolism requires a redefinition not only of these traditional concepts, but also of the body or of one’s own identity.Aims: To explore the experiences of patients after receiving a heart from a donor.Methods: A phenomenological qualitative approach, through Merleau Ponty and Levinas perspectives, was conducted to capture the subjective experiences of heart transplant patients. We conducted 22 in-depth interviews: 12 with heart transplant patients from two hospitals in Madrid (Spain), and 10 with relatives who lived with them.Results: The line between life and death is erased for heart transplant patients. Three main themes arose from the analysis: towards death, the frontier between life and death, and towards life. The need to redefine the concepts of life and death is structured around issues such as the thought of facing one’s own death and the concept of gift and resurrection.Conclusion: Organ transplant techniques open the door to a new definition of death, of the identity of the body and its parts and the limits of life. Considering the cultural, legal, psychological, social and symbolic elements involved in the heart transplant process, a qualitative approach provides new avenues of understanding the clinical process from the patients’ perspective.

Aim: To evaluate the effectiveness of an online nursing consultation through the Internet platform Red Sinapsis (RS) in improving the perceived quality of life of patients with fibromyalgia (FM). Eighty patients with FM were randomized to an intervention group (n = 40) or control group (n= 40). The intervention group (IG) was monitored by a nursing specialist through the online platform RS while the control group (CG) received standard follow-up at the clinic. The Fibromyalgia Impact Questionnaire (FIQ) and 36-item Short-Form Health Survey (SF-36) were used at baseline, 6-month, and 12-month follow-up. The IG showed a 65% improvement in the perception of their general state of health at 12 months into the study, compared with an improvement of 5.6% in the CG (p < .001). The IG also achieved better results for emotional status, with a maintained improvement throughout the study of more than 2 points in the anxiety variable (from 7.64 to 5.36), that remained constant in the CG. The depression variable also showed constant improvement over the 12 months of the study in the IG, rising from an average of 7.72 (standard deviation [SD] = 2.05) to 5.33 (SD = 1.65), while in the CG a slight deterioration was observed. In both cases, the difference in mood evolution was significant (p < .001). Online nursing follow-up for people with fibromyalgia improves patients' perceived quality of life related to their welfare and emotional state. Fibromyalgia (FM) is among the diseases causing the highest rate of occupational disability in Spain. Fibromyalgia (FM) is a complex condition that causes pain, fatigue, non-refreshed sleep, mood disturbance and cognitive impairment.