Dilemmas and deliberations in managing the care trajectory of elderly patients with complex health needs: a single-case study.

BACKGROUND: Today, the ageing population is larger than ever before, and people who are living longer with chronic illnesses and multimorbidity need support from multiple healthcare service levels. Similarly, healthcare systems are becoming increasingly specialised and fragmented. The World Health Organization has highlighted novel policies for developing integrated and person-centred services. However, patients, next of kin and health professionals face several challenges in managing healthcare during the care trajectory. Limited literature has addressed the challenges experienced by these groups. Therefore, this study aimed to identify the dilemmas and deliberations faced by patients, next of kin and health professionals during the care trajectory of elderly patients with complex healthcare needs. METHOD: The study had a qualitative single-case design. The case was taken from a multi-case study exploring the care trajectory of elderly patients. The participants were the patient, their next of kin and the health professionals involved in the patient's care trajectory. Data were obtained via observation and individual interviews conducted during the patient's hospital stay and after the patient returned home. RESULTS: The dilemmas and deliberations in managing the care trajectory were divided into four main themes: the health professionals' pursuit of appropriate and feasible healthcare services, the next of kin's planning horizons, being the person left in limbo and reorganising the home for comprehensive healthcare. CONCLUSION: The pursuit of a tailored and suitable healthcare service lead to a comprehensive mobilisation of and work by all actors involved. Having a comprehensive understanding of these conditions are of importance in developing an appropriate care trajectory for the elderly patient with complex need.

International consensus on sleep problems in pediatric palliative care: Paving the way.

OBJECTIVE: Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care. Therefore, we initiated an international project aimed at establishing a multidisciplinary consensus. METHODS: A two-round Delphi approach was adopted to develop recommendations in the areas of Definition, Assessment/Monitoring, and Treatment. After selecting a panel of 72 worldwide experts, consensus (defined as ≥75% agreement) was reached through an online survey. RESULTS: At the end of the two voting sessions, we obtained 53 consensus recommendations based on expert opinion on sleep problems in PPC. CONCLUSIONS: This study addresses the need to personalize sleep medicine's approach to the palliative care setting and its peculiarities. It provides the first international consensus on sleep problems in PPC and highlight the urgent need for global guidance to improve sleep-related distress in this vulnerable population and their caregivers. Our findings represent a crucial milestone that will hopefully enable the development of guidelines in the near future.

Keeping Hope Possible Toolkit: The Development and Evaluation of a Psychosocial Intervention for Parents of Infants, Children and Adolescents with Life Limiting and Life Threatening Illnesses.

BACKGROUND: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children's care becomes the central focus of family life. Inadequate support for parents is detrimental to their well-being and management of their child's care and support needs. METHODS: The second phase of this evaluation study followed a quasi-experimental crossover design to test a theory-based psychosocial intervention, the Keeping Hope Possible Toolkit. Fifty-nine participants were randomly assigned to one of two sequence groups, with measures of hope, feelings of control, distress, and uncertainty completed pre- and post-intervention, and at a three-month follow-up. Qualitative interviews sought to assess participant experiences with the intervention, along with acceptability and feasibility. RESULTS: Significant influence on parental distress was found, and the qualitative findings reveal benefits of the intervention for parental wellbeing. The intervention effectively offered practical and emotional support to diverse family caregivers. CONCLUSIONS: The evidence-informed KHP intervention can be used by healthcare providers to intervene with family caregivers to support their dynamic emotions including hope, need to live in the moment and remember self, and social preferences. In doing so, parents' critical caregiving activities can be sustained and their child's health and wellbeing optimized.

Long-Term Care for Tracheotomised Patients With or Without Invasive Ventilation. Lessons Learned from a Scoping Review of International Concepts.

INTRODUCTION: Patients with long-term tracheostomies, with or without mechanical ventilation have complex and comprehensive healthcare needs. The number of patients is increasing internationally. Evidence suggests poor healthcare quality and outcomes, especially in Germany. Against this background, we searched for international concepts tailoring healthcare to these special needs, their key characteristics and results from their evaluations. METHODS: A scoping review was performed in 2018 based on a systematic search of scientific databases and grey literature without restrictions to publication type. Key information was charted and thematically analysed based on the taxonomy of integrated care. Evaluations were analysed descriptively. RESULTS: Seventy-nine publications related to 25 programmes from five countries were included. Healthcare concepts are usually regionally adapted and tertiary sector-based with a cross-sectoral approach. Care coordination responsibility is usually assigned to advanced nurse practitioners, embedded in multi-professional programme teams. Interventions consist of specialised needs-based clinical services combined with care coordination, homecare support and education. Evaluation of concepts is scarce, but existing results indicate beneficial effects on patient-related outcomes, care coordination, healthcare utilisation and costs. CONCLUSIONS: The concepts available in the literature are often poorly described and rarely evaluated. Research is needed on their impact on healthcare quality and outcomes. However, several key characteristics were identified, which should be considered when developing and implementing integrated and needs-based approaches for the patient group in Germany and beyond.

Parent-Driven Campaign Videos: An Analysis of the Motivation and Affect of Videos Created by Parents of Children With Complex Healthcare Needs.

Caring for a child with complex health care needs places additional stress and time demands on parents. Parents often turn to their peers to share their experiences, gain support, and lobby for change; increasingly this is done through social media. The WellChild #notanurse_but is a parent-driven campaign that states its aim is to "shine a light" on the care parents, who are not nurses, have to undertake for their child with complex health care needs and to raise decision-makers' awareness of the gaps in service provision and support. This article reports on a study that analyzed the #notanurse_but parent-driven campaign videos. The purpose of the study was to consider the videos in terms of the range, content, context, perspectivity (motivation), and affect (sense of being there) in order to inform the future direction of the campaign. Analysis involved repeated viewing of a subset of 30 purposively selected videos and documenting our analysis on a specifically designed data extraction sheet. Each video was analyzed by a minimum of 2 researchers. All but 2 of the 30 videos were filmed inside the home. A variety of filming techniques were used. Mothers were the main narrators in all but 1 set of videos. The sense of perspectivity was clearly linked to the campaign with the narration pressing home the reality, complexity, and need for vigilance in caring for a child with complex health care needs. Different clinical tasks and routines undertaken as part of the child's care were depicted. Videos also reported on a sense of feeling different than "normal families"; the affect varied among the researchers, ranging from strong to weaker emotional responses.

Evaluating the feasibility of a parent-briefing intervention in a pediatric acute care setting.

PURPOSE: The purpose of this study was to test the feasibility of a parent-briefing intervention for parents of hospitalized children with complex healthcare needs. DESIGN AND METHODS: A phase I, single-group, posttest study. There were 18 physicians, 25 nurses, and 31 parents who participated in the study. Participants were asked to sit while carrying out the briefings with parents. Parents and clinicians completed a feasibility questionnaire post briefings. RESULTS: Sixty-eight briefings were carried out. Parents and nurses evaluated the briefings in a favorable manner, whereas physicians' ratings were mixed. PRACTICE IMPLICATIONS: Further inquiry is recommended to understand the effects of a structured communication intervention on parent-professional decision-making practices.