Webcam use in German neonatological intensive care units: an interview study on parental expectations and experiences.

BACKGROUND: To bridge the physical distance between parents and children during a neonatal intensive care unit (NICU) stay, webcams are used in few German NICUs. They allow parents to view their infant even when they cannot be present on the ward. The aim of the study was to explore the factors for and against webcam use that parents with or without webcam use encountered. METHODS: Guideline-based, semi-structured qualitative interviews were conducted in the period from September 2019 to August 2020. Interview transcripts were analysed using a category-based content analysis. The categories were generated in a combined deductive-inductive procedure. RESULTS: We interviewed 33 mothers and seven fathers. Parents with webcam experience emphasised positive aspects concerning their webcam use. Factors that increased webcam acceptance included feeling certain about the child's well-being and an increased sense of proximity. Only a few critical voices emerged from parents who had webcam experience, e.g. regarding privacy concerns. Parents who had no experience with webcam use showed ambivalence. On the one hand, they expressed a positive attitude towards the webcam system and acknowledged that webcam use could result in feelings of control. On the other hand, reservations emerged concerning an increase of mental stress or a negative influence on parental visitation behaviour. CONCLUSION: In addition to the parents' positive experiences with webcam use, results show a need within parents who lacked webcam experience. Despite some criticism, it was evident that webcam use was primarily seen as an opportunity to counteract the negative consequences of separation in the postnatal phase. TRIAL REGISTRATION: The Neo-CamCare study is registered at the German Clinical Trials Register. DRKS-ID: DRKS00017755 . Date of Registration in DRKS: 25-09-2019.

Caregiver burden and the medical ethos.

Are physicians sometimes morally required to ease caregiver burden? In our paper we defend an affirmative answer to this question. First, we examine the well-established principle that medical care should be centered on the patient. We argue that although this principle seems to give physicians some leeway to lessen caregivers' suffering, it is very restrictive when spelled out precisely. Based on a critical analysis of existing cases for transcending patient-centeredness we then go on to argue that the medical ethos should indeed contain a rule requiring physicians to alleviate caregiver burden under certain circumstances. Finally, we apply our findings to deep brain stimulation (DBS) for Parkinson's disease. We present empirical data from a recent study of DBS indicating that spousal caregivers of Parkinson patients treated with DBS are sometimes deeply troubled by the effects of the therapy and discuss what moral obligations the treating physicians may have in such cases.

Priorities in healthcare provision in Parkinson's disease from the perspective of Parkinson Nurses: A focus group study.

Background: Through their expertise and diverse skills, Parkinson Nurses are key care providers for people with Parkinson's disease. They are seen as an important profession for person-centered and multidisciplinary care, considered priorities in Parkinson's care delivery. Currently, however, little is known about the priorities that this profession itself defines for the care of Parkinson's patients and how they perceive their own role in the care process. Objective: To explore the perspective of Parkinson Nurses on care priorities in people with Parkinson's disease. Design: Qualitative study. Settings: The iCare-PD study served as the object of study by establishing an interdisciplinary, person-centered and nurse-led care model in several European countries and Canada. The nurses who participated in this model were part of the study. Participants: Six Parkinson Nurses participated in the study. Methods: We conducted a thematic focus group, adopting the paradigm of pragmatism to draft an interview guide. The focus group was based on the inspiration card method and followed recommendations for co-creation processes. Results: Parkinson Nurses define care priorities for Parkinson's in areas of education, multi-professionalism, and need-orientation. They see themselves as mediators and coordinators of care delivery processes. Conclusions: In line with international recommendations, Parkinson Nurses prioritize key aspects of multidisciplinary and person-centered care. At the same time, however, the nurses also name care priorities that go beyond the international recommendations. It is therefore crucial to integrate the perspective of this important profession into recommendations for the delivery of healthcare for people with Parkinson's.Tweetable abstract How do specialized nurses define priorities for person-centered Parkinson's care? Answers are sought in this qualitative study by @MarlenaMunster.

Study protocol of the HessenKohorte2042: a prospective, longitudinal cohort study characterising quality of life in people with Parkinson's disease and their caregivers using a bio-psycho-social approach.

INTRODUCTION: Quality of life (QoL) is of paramount importance as an outcome to monitor and guide therapies for people with Parkinson's disease (PwPD). In particular, due to the heterogeneous symptoms that PwPD may experience during their disease course, QoL can deteriorate not only in patients but also in their caregivers, with a variety of psychosocial consequences. However, there is a lack of longitudinal studies that explore how QoL evolves over time and what factors are significant. Furthermore, holistic approaches that consider bio-psycho-social determinants are rare. In the worst cases, these gaps can lead to suboptimal care and therefore unmet needs for patients and their caregivers, resulting in unnecessary symptom burden and increased healthcare costs for society. METHODS AND ANALYSIS: This prospective, longitudinal study will follow 1000 PwPD along with their caregivers for 20 years, with up to 40 semi-annual assessments. Patient data and sample collection will include clinical assessments, self-reported outcome measures focusing on QoL, biospecimen collection and MRI. Caregiver burden will be systematically assessed through self-administered questionnaires. The use of digitised surveys will allow efficient data collection and convenient assessment at home. Our primary objective is to attain a holistic understanding of QoL in PwPD and establish a tool to measure it. The secondary objective is to explore the psycho-social and biological variables associated with QoL of patients and caregivers over the progression of the disease. This will provide key information for diagnostic and prognostic prediction, therapeutic patient stratification and adaptation of therapy in the future. ETHICS AND DISSEMINATION: The study was approved by the local ethics committee of the University Hospital of Marburg (study number: 209/19). The results will be disseminated by means of publication in peer-reviewed journals, international conference contributions, annual patient meetings and a dedicated website. TRIAL REGISTRATION NUMBER: German Clinical Trials Register (DRKS00023598).

Coping Styles in Patients with Parkinson's Disease: Consideration in the Co-Designing of Integrated Care Concepts.

Integrated care models may help in designing care for Parkinson's disease (PD) that is more efficient and patient-centered. However, in order to implement such models successfully, it is important to design these models around patients' needs and preferences. Personality traits and coping styles play a well-studied important role in patients' disease perception and their utilization of medical and social services to cope with their disease. There is evidence that coping styles remain largely unchanged over the course of PD; coping styles are defined in the early stages of life and extend over the entire lifespan of the patient. Therefore, it seems necessary to consider aspects of the personality traits and coping styles of PD patients in the development and implementation of care models. We postulate that by taking patients' personality traits and coping styles into account, care models for PD can be designed in a more individualized and, thus, more effective way. This paper, structured in three main sections, attempts to structure the uptake of patients' coping styles in the co-design of integrated care models. However, further studies are needed to better develop tailored care concepts to the needs of people living with PD and their individual coping styles.

Telemedicine as an Untapped Opportunity for Parkinson's Nurses Training in Personalized Care Approaches.

(1) Background: Parkinson nurses (PN) take over important functions in the telemedical care of person's with Parkinson's disease (PwPs). This requires special competencies that have so far been largely unexplored. The aim of the article is to identify competencies of PN operating in a personalized care model. (2) Methods: This study employed a qualitative approach. Based on the competency framework for telenursing, PN were asked about their competencies using a qualitative online survey. (3) Results: The results show that PN need competencies on a personal and organizational level, as well as in the relationship with PwPs. PN have developed these skills through professional exchange, training, and personal experience. In addition, both hindering and beneficial factors for the development of competencies could be identified. (4) Conclusions: Competency development for telemedical care is complex and must be designed and promoted in a targeted manner.

The Role of Parkinson Nurses for Personalizing Care in Parkinson's Disease: A Systematic Review and Meta-Analysis.

BACKGROUND: Quality of life (QoL) of persons with Parkinson's disease (PD) is diminished by (non-)motor symptoms, that require personalized care. Parkinson Nurses (PN) may be pivotal promoting tailored care offerings. This systematic review and meta-analysis investigates PD care models and aims at furnishing current concepts of PN to offer personalized care. OBJECTIVE: The purpose of this study is to identify the various roles and functions that PN may hold for personalized PD care. METHODS: We performed a systematic literature review, utilizing: PubMed, Web of Science, The Cochrane Library, and PsycINFO. The review qualitatively evaluated articles, which described personalized care models involving PNs and was guided by the personalized care management model. A meta-analysis compared patient-reported QoL (quantified using the 39-item Parkinson's Disease Questionnaire) between personalized care interventions involving PN versus standard care with. RESULTS: Twenty-seven publications were identified, including six randomized, controlled trials ascertaining with health related QoL (n = 1830 PwPs). The qualitative evaluation revealed that PN contribute to all aspects of personalized care. The meta-analysis showed no improved QoL in personalized care models compared to standard care, thought a great heterogeneity among study design and interventions was outlined (Standardized Mean Difference = -0.8935; 95% Confidence Interval, -2.1177 to 0.3307; z = -1.43, p = 0.1526). CONCLUSION: PN fulfil important functions in personalized PD care. For the future, a clear role definition will be necessary to adjust training for PN across healthcare systems and care settings but especially to realize their full potential for PD care.

Moving towards Integrated and Personalized Care in Parkinson's Disease: A Framework Proposal for Training Parkinson Nurses.

Delivering healthcare to people living with Parkinson's disease (PD) may be challenging in face of differentiated care needs during a PD journey and a growing complexity. In this regard, integrative care models may foster flexible solutions on patients' care needs whereas Parkinson Nurses (PN) may be pivotal facilitators. However, at present hardly any training opportunities tailored to the care priorities of PD-patients are to be found for nurses. Following a conceptual approach, this article aims at setting a framework for training PN by reviewing existing literature on care priorities for PD. As a result, six prerequisites were formulated concerning a framework for training PN. The proposed training framework consist of three modules covering topics of PD: (i) comprehensive care, (ii) self-management support and (iii) health coaching. A fourth module on telemedicine may be added if applicable. The framework streamlines important theoretical concepts of professional PD management and may enable the development of novel, personalized care approaches.