The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
Background: To prevent deterioration after admission to the intensive care unit (ICU), and to improve rehabilitation, the ICU team should use digital technologies to provide comprehensive and practical information alongside personalised support for survivors and their family members. However, a knowledge gap exists on the users’ preferences for such an e-health platform in ICU follow-up services. Objectives: This study aims to explore the opinions and priorities for an e-health platform, including choices in digital elements, according to survivors of critical illness and their family members. Methods: A cross-sectional survey was used among members and other interested individuals of the Dutch volunteer organisation ‘Foundation Family- and Patient-Centred Intensive Care’. An investigator-developed questionnaire was disseminated through the newsletter and social media channels of the Foundation Family- and Patient-Centred Intensive Care. The results of this member consultation were analysed and reported as descriptive statistics on demographic variables and outcome measures in opinions and priorities of the participants. Results: Most of the 227 participants were female (76%), aged 46–55 years (33%), and completed higher education (70%). The participants reported high confidence in advice delivered through an e-health platform (72%). They prioritised the provision of a guide including relevant professionals who may support them during their recovery when using an e-health platform. Conclusions: ICU survivors prioritised the provision of relevant professionals who may support them during their recovery when using an e-health platform; however, selection bias means the population studied is likely to be more digitally connected than the general ICU population. Digital solutions could cater to their information and support needs. For family members, the highest priority reported was receiving help in managing their emotional distress. The development of an e-health platform considering the opinions and priorities of this target group could contribute to a personalised recovery trajectory promoting self-management while including digital elements addressing relevant ICU follow-up services.
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In most countries, maternal and newborn care is fragmented and focused on identification and treatment of pathology that affects only the minority of women and babies. Recently, a framework for quality maternal and newborn care was developed, which encourages a system-level shift to provide skilled care for all.This care includes preventive and supportive care that works to strengthen women’s capabilities and focuses on promotion of normal reproductive processes while ensuring access to emergency treatment when needed. Midwifery care is pivotal in this framework, which contains several elements that resonate with the main dimensions of primary care. Primary health care is the first level of contact with the health system where most of the population’s curative and preventive health needs can be fulfilled as close as possible to where people live and work. In this paper, we argue that midwifery as described in the framework requires the application of a primary care philosophy for all childbearing women and infants. Evaluation of the implementation of the framework should therefore include tools to monitor the performance of primary midwifery care.
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