Waves of family hope: narratives of families in the context of pediatric chronic illness

Objective: to analyze narratives about the experience of hope of families in the context of pediatric chronic illness. Method: a narrative research using Family Systems Nursing as a conceptual framework. Three families of children and adolescents diagnosed with complex chronic illness participated in this study, totaling 10 participants. Data collection was developed using family photo-elicitation interviews. Family narratives were constructed and analyzed according to inductive thematic analysis with theoretical data triangulation. Results: the analytical theme - Waves of Family Hope in the Context of Pediatric Chronic Illness - is composed of four different types of hope: uncertain hope, caring hope, latent hope, and expectant hope. Movement through these hopes generates a driving energy and depends on a number of factors: support, information, searching for normality, and thoughts and comparisons. Conclusion: the results highlight the interaction and reciprocities of the members of the family unit, and the dynamics of hope, and illustrate the different types of hope and the factors that influence them. This study highlights the experience of hope as a family resource rather than just an individual resource, and supports health professionals in the planning of family care considering hope as an essential and dynamic family resource.

Introduction to Cystic Fibrosis for Mental Health Care Coordinators and Providers: Collaborating to Promote Wellness

To maximize health, individuals with cystic fibrosis (CF) follow a complex, burdensome daily care regimen. Managing CF is associated with a range of significant biopsychosocial challenges and places individuals with CF, and their caregivers, at greater risk for developing anxiety and depression. To promote wellness and address the potential barriers that affect management of this complex chronic illness, many individuals would benefit from treatment from a behavioral health provider. Social workers within multidisciplinary CF care teams are well positioned to respond to this need, and an expanding number of social workers serving as behavioral health providers in the community will be sought as a resource to provide treatment to this population. This article serves as a primer for social workers to maximize knowledge of the psychosocial and potential behavioral health needs of individuals with CF across the life span. To best support individuals with CF, authors describe the disease-specific manifestations and outline the numerous potential clinical targets for social work to promote wellness. The article concludes by highlighting the importance of communication with the medical team and considerations for effective collaborative care.

Uncertainty Management Among Older Adults with Heart Failure: Responses to Receiving Implanted Device Data using a Fictitious Scenario Interview Method

Heart failure (HF) is a complex chronic illness that affects the older adult population, requiring medical therapy and day-to-day management to prevent worsening and exacerbation. Patients with HF are often treated with cardiac implanted electronic devices (CIEDs) which capture diagnostic and predictive parameters for HF. In this work we explore how patients would respond to receiving data from an implanted device, using a fictitious scenario interview method with 24 older adults with HF. We applied an uncertainty management lens to better understand how patients face uncertain outcomes and integrate novel data into their decision making. The findings provide insight into how patients would engage and respond to a technology which provides an indicator of their HF status from an implanted device.

Primary care redesign for person-centred care: delivering an international generalist revolution

Person-centred primary care is a priority for patients, healthcare practitioners and health policy. Despite this, data suggest person-centred care is still not consistently achieved – and indeed, that in some areas, care may be worsening. Whole-person care is the expertise of the medical generalist – an area of clinical practice that has been neglected by health policy for some time. It is internationally recognised that there is a need to rebalance specialist and generalist primary care. Drawing on 15 years of scholarship within the science of medical generalism (the expertise of whole-person medical care), this discussion paper outlines a three-tiered approach to primary care redesign; describing changes needed at the level of the consultation, practice set up and strategic planning. The changing needs of patients living with complex chronic illness has already started a revolution in our understanding of healthcare systems. This paper outlines work to support that paradigm shift from disease-focused to person-focused primary healthcare.