Examining how goals of care communication are conducted between doctors and patients with severe acute illness in hospital settings: A realist systematic review.

BACKGROUND: Patient involvement in goals of care decision-making has shown to enhance satisfaction, affective-cognitive outcomes, allocative efficiency, and reduce unwarranted clinical variation. However, the involvement of patients in goals of care planning within hospitals remains limited, particularly where mismatches in shared understanding between doctors and patients are present. AIM: To identify and critically examine factors influencing goals of care conversations between doctors and patients during acute hospital illness. DESIGN: Realist systematic review following the RAMESES standards. A protocol has been published in PROSPERO (CRD42021297410). The review utilised realist synthesis methodology, including a scoping literature search to generate initial theories, theory refinement through stakeholder consultation, and a systematic literature search to support program theory. DATA SOURCES: Data were collected from Medline, PubMed, Embase, CINAHL, PsychINFO, Scopus databases (1946 to 14 July 2023), citation tracking, and Google Scholar. Open-Grey was utilized to identify relevant grey literature. Studies were selected based on relevance and rigor to support theory development. RESULTS: Our analysis included 52 papers, supporting seven context-mechanism-output (CMO) hypotheses. Findings suggest that shared doctor-patient understanding relies on doctors being confident, competent, and personable to foster trusting relationships with patients. Low doctor confidence often leads to avoidance of discussions. Moreover, information provided to patients is often inconsistent, biased, procedure-focused, and lacks personalisation. Acute illness, medical jargon, poor health literacy, and high emotional states further hinder patient understanding. CONCLUSIONS: Goals of care conversations in hospitals are nuanced and often suboptimal. To improve patient experiences and outcome of care interventions should be personalised and tailored to individual needs, emphasizing effective communication and trusting relationships among patients, families, doctors, and healthcare teams. Inclusion of caregivers and acknowledgment at the service level are crucial for achieving desired outcomes. Implications for policy, research, and clinical practice, including further training and skills development for doctors, are discussed.

"I'd rather wait and see what's around the corner": A multi-perspective qualitative study of treatment escalation planning in frailty.

INTRODUCTION: People living with frailty risk adverse outcomes following even minor illnesses. Admission to hospital or the intensive care unit is associated with potentially burdensome interventions and poor outcomes. Decision-making during an emergency is fraught with complexity and potential for conflict between patients, carers and clinicians. Advance care planning is a process of shared decision-making which aims to ensure patients are treated in line with their wishes. However, planning for future care is challenging and those living with frailty are rarely given the opportunity to discuss their preferences. The aim of the ProsPECT (Prospective Planning for Escalation of Care and Treatment) study was to explore perspectives on planning for treatment escalation in the context of frailty. We spoke to people living with frailty, their carers and clinicians across primary and secondary care. METHODS: In-depth online or telephone interviews and online focus groups. The topic guide explored frailty, acute decision-making and planning for the future. Data were thematically analysed using the Framework Method. Preliminary findings were presented to a sample of study participants for feedback in two online workshops. RESULTS: We spoke to 44 participants (9 patients, 11 carers and 24 clinicians). Four main themes were identified: frailty is absent from treatment escalation discussions, planning for an uncertain future, escalation in an acute crisis is 'the path of least resistance', and approaches to facilitating treatment escalation planning in frailty. CONCLUSION: Barriers to treatment escalation planning include a lack of shared understanding of frailty and uncertainty about the future. Emergency decision-making is focussed on survival or risk aversion and patient preferences are rarely considered. To improve planning discussions, we recommend frailty training for non-specialist clinicians, multi-disciplinary support, collaborative working between patients, carers and clinicians as well as broader public engagement.

Patient or family perceived deterioration in functional status and outcome after intensive care admission: a retrospective cohort analysis of routinely collected data.

OBJECTIVE: To explore the association of patient or family reported functional deterioration (defined by a single question) in the preceding year, with mortality outcome for those admitted to the intensive care unit (ICU). DESIGN: Retrospective observational analysis of a routinely collected data source. PARTICIPANTS: Patients that were admitted to the ICU at Northwick Park and St Marks Hospitals, London North West University Healthcare NHS Trust between 01 October 2017 to 15 June 2019 were included. Patients were excluded if they had a prior ICU admission during the existing hospital episode or if information on functional deterioration could not be retrieved from either the patient or their advocate. PRIMARY OUTCOMES: Mortality at the point of hospital discharge and 1 year following admission to the ICU. RESULTS: Of the 1006 patients who were admitted to the ICU during the study period, information on functional deterioration was available for 621 patients who were included in the analysis. From these, 251 (40.4%) patients had patient or family reported functional deterioration in the preceding year, while 370 (59.6%) patients had a perceived stable functional baseline. Comparing the two groups, mortality was significantly higher in those who had functionally deteriorated compared with those with stable baseline function, at the point of hospital discharge (45.4% vs 25.9%; p<0.0001) and at 1 year (59.4% vs 33.0%; p<0.0001). CONCLUSION: Patient or family reported functional deterioration was significantly associated with higher mortality at the point of hospital discharge and at 1 year. The concept of functional deterioration in the lead up to ICU admission warrants further exploration.

Parent Perspectives on Their Mobile Technology Use: The Excitement and Exhaustion of Parenting While Connected.

OBJECTIVE: Parent use of mobile devices (e.g., smartphones, tablets) while around their young children may be associated with fewer or more negative parent-child interactions, but parent perspectives regarding this issue have not been explored. We aimed to understand parent views regarding their mobile device use to identify actionable targets of potential intervention. METHOD: We conducted 35 in-depth semi-structured group and individual interviews with English-speaking caregivers of children 0 to 8 years old, purposively sampled from diverse ethnic backgrounds, educational levels, and employment statuses. Following thematic saturation, results were validated through expert triangulation and member checking. RESULTS: Participants included 22 mothers, 9 fathers, and 4 grandmothers; 31% were single parents, 43% nonwhite race/ethnicity, and 40% completed high school or less. Participants consistently expressed a high degree of internal tension regarding their own mobile technology use, which centered around 3 themes relevant to intervention planning: (1) Cognitive tensions (multitasking between work and children, leading to information/role overload), (2) emotional tensions (stress-inducing and reducing effects), and (3) tensions around the parent-child dyad (disrupting family routines vs serving as a tool to keep the peace). CONCLUSION: Caregivers of young children describe many internal conflicts regarding their use of mobile technology, which may be windows for intervention. Helping caregivers understand such emotional and cognitive responses may help them balance family time with technology-based demands.

Overstimulated Consumers or Next-Generation Learners? Parent Tensions About Child Mobile Technology Use.

PURPOSE: Mobile technology is ubiquitous, but its impact on family life has not been thoroughly addressed in the scientific literature or in clinical practice guidelines. We aimed to understand parents' views regarding mobile technology use by young children, aged 0 to 8 years, including perceived benefits, concerns, and effects on family interactions, with the goal of informing pediatric guidelines. METHODS: We conducted 35 in-depth, semistructured group and individual interviews with English-speaking caregivers of diverse ethnic backgrounds, educational levels, and employment statuses. After thematic saturation, results were validated through expert triangulation and member checking. RESULTS: Participants included 22 mothers, 9 fathers, and 4 grandmothers; 31.4% were single parents, 42.9% were of nonwhite race or ethnicity, and 40.0% completed high school or less. Participants consistently expressed a high degree of tension regarding their child's mobile technology use, from which several themes emerged: (1) effects on the child-fear of missing out on educational benefits vs concerns about negative effects on thinking and imagination; (2) locus of control-wanting to use digital devices in beneficial ways vs feeling that rapidly evolving technologies are beyond their control (a tension more common in low-income caregivers); and (3) family stress-the necessity of device use in stressed families (eg, to control a child's behavior or as an inexpensive learning/entertainment tool) vs its displacement of family time. CONCLUSIONS: Caregivers of young children describe many novel concepts regarding use of mobile technology, raising issues not addressed by current anticipatory guidance. Guidance may be more effectively implemented if it takes into account parents' uncertainties, locus of control, and functional uses of mobile devices in families.

Patterns of mobile device use by caregivers and children during meals in fast food restaurants.

BACKGROUND AND OBJECTIVES: Mobile devices are a ubiquitous part of American life, yet how families use this technology has not been studied. We aimed to describe naturalistic patterns of mobile device use by caregivers and children to generate hypotheses about its effects on caregiver-child interaction. METHODS: Using nonparticipant observational methods, we observed 55 caregivers eating with 1 or more young children in fast food restaurants in a single metropolitan area. Observers wrote detailed field notes, continuously describing all aspects of mobile device use and child and caregiver behavior during the meal. Field notes were then subjected to qualitative analysis using grounded theory methods to identify common themes of device use. RESULTS: Forty caregivers used devices during their meal. The dominant theme salient to mobile device use and caregiver-child interaction was the degree of absorption in devices caregivers exhibited. Absorption was conceptualized as the extent to which primary engagement was with the device, rather than the child, and was determined by frequency, duration, and modality of device use; child response to caregiver use, which ranged from entertaining themselves to escalating bids for attention, and how caregivers managed this behavior; and separate versus shared use of devices. Highly absorbed caregivers often responded harshly to child misbehavior. CONCLUSIONS: We documented a range of patterns of mobile device use, characterized by varying degrees of absorption. These themes may be used as a foundation for coding schemes in quantitative studies exploring device use and child outcomes.