Connected health services: Health professionals' role as seen by parents of a child with inflammatory bowel disease.

Objective: Connected health services will change the scope of health professionals' roles. It is unclear how parents of a child with inflammatory bowel disease perceive the role of health professionals in relation to these services and what their experiences and needs are. The purpose of this study is to highlight parents' experiences with this role. Furthermore, it aims to outline the fundamental needs that parents have regarding this role, in order to promote audience-specific access to these services and derive overarching action measures. Methods: Fourteen parents of children with inflammatory bowel disease from seven different clinics in Switzerland were recruited. Between August 2022 and February 2023, these parents were interviewed in semi-structured interviews. The interviews were analyzed using a structured qualitative content analysis. Results: Five main categories were identified, with few parents having prior experience with the role of health professionals in this area. Parents saw health professionals in the role of gatekeepers, transferers of knowledge and in a supporting function for these services. From the parents' perspective, health professionals should recognize the limitations of these services and use them as a complement to standard treatment. Conclusion: The role of health professionals in relation to connected health services needs to be adapted from the parents' perspective. To meet the needs of parents, health professionals must have access to these services. In addition to health professionals' personal engagement with these services, institutional and policy changes, as well as research on role development from the perspective of other stakeholders are needed.

Parents' experiences of family and daily life after their child's stay in the pediatric intensive care unit: a qualitative descriptive study.

INTRODUCTION: The stay of a critically ill child in a pediatric intensive care unit (PICU) is a significant experience for the family. Thus far, little is known regarding the impact of this stay on parents and their healthy children for whom no continuous aftercare services are offered. This study aimed to capture the post-stay experience and needs of parents after this traumatic event so that they could return to family and everyday life. METHODS: This qualitative descriptive study was conducted in collaboration with four pediatric intensive care units in Switzerland. It included parents whose children had fully recovered after a stay and who did not require continuous medical follow-up. All children were hospitalized in the PICU for at least 48 h. Data were collected through narrative pairs (n = 6) and individual interviews (n = 8). Interviews were audio recorded, transcribed, coded inductively according to Saldaña, and analyzed. RESULTS: The results showed three related phases that influence each other to restore normality in daily life: Trust and inclusion in the treatment process during the stay (1), processing after the stay (2), and returning to everyday life (3). CONCLUSION: Follow-up meetings should be available to all parents whose children have been hospitalized in the PICU. In particular, it should also be available to parents whose children have fully recovered and no longer have any medical disabilities.

Use of digital technologies to combat loneliness and social isolation: a cross-sectional study in Swiss outpatient care during COVID-19 pandemic.

BACKGROUND: There is limited data on the use of digital technologies in outpatient care in Switzerland. Our objectives were therefore to determine which digital technologies are used and whether they had an impact on loneliness and social isolation in the wake of the COVID-19 pandemic. METHODS: A cross-sectional survey design was used with a convenience sample of 1272 outpatient care providers in Switzerland. The questionnaire used is based on an unsystematic literature review and a previous qualitative study with six outpatient caregivers and two caring relatives, based on which the 30 items for this questionnaire were developed. Data were analyzed descriptively, and group comparisons were made using the Kruskal Wallis test. Changes over time were measured using Friedman test with Bonferroni post hoc tests and Wilcoxon test for paired samples. RESULTS: The impact of the COVID-19 pandemic was evident both on the part of the health care system, e.g., inadequate protective equipment; on the part of health care providers, e.g., increasing fatigue in keeping abreast of the virus as the pandemic progressed; and on the part of clients, who reduced services of care, e.g., out of fear of infection. According to the assessment of the outpatient caregivers, loneliness and social isolation of the clients was high in spring 2020 and increased strongly in the following winter. Alternative solutions, such as digital technologies, were hardly used or not used at all by the clients. CONCLUSIONS: The results suggest that the pandemic is dramatically impacting clients. This highlights the urgent need to invest in the development of appropriate digital technologies reducing the impact of social isolation and loneliness and the associated long-term costs to the healthcare system.

Complexity in non-pharmacological caregiving activities at the end of life: an international qualitative study.

BACKGROUND: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life. METHODS AND FINDINGS: Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings. CONCLUSIONS: Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.