Journal of Family Nursing最新文献

This review aimed to develop a framework to understand the process of information management in families with inherited conditions. Electronic databases were searched for relevant peer-reviewed articles. Articles were included if they were original research on families affected by any confirmed inherited condition, described how a family accesses, interprets, conveys, and/or uses information about the disease, included the recruitment of more than one family member, and used family as the unit of analysis. Data were analyzed through directed content analysis. Thirty-four articles from 27 studies were analyzed. We propose a framework for family information management consisting of the following domains: contextual influences, family information management behaviors, and family information management outcomes. This proposed framework expands the understanding of how families manage their genetic information in making health care decisions for their affected and at-risk relatives.

Youth prefer to be involved in treatment decisions, yet youth participation is minimally present in decisions like stem cell transplant (SCT) that require frequent medications and social isolation to be successful in curing cancer and chronic illness. The purpose of our study is to identify the barriers and facilitators to youth decision-making involvement in the youth-parent interaction when referred for treatment with SCT. We report qualitative findings from our theory-driven mixed-methods study. We thematically analyzed our field notes of youth and parent observations and audio-recordings during SCT consultations and semi-structured interviews. Data were collected from 10 youth, 8 to 16 (median 12) years of age, and their parents (n = 20). Three themes emerged: (a) Reluctant unless motivated, (b) Uncertain but capable, and (c) Limited unless supported. Our findings emphasize the critical role parents may take in facilitating youth involvement in decisions.

Caregiving is often associated with negative physical and mental health outcomes, and as the COVID-19 pandemic escalated, caregivers experienced more burden and provided more care with substantially less support. Digital resources may have been one way caregivers managed demands for care and needs for information. This mixed-methods study included surveys and semi-structured interviews with caregivers (n = 11) to describe experiences and use of digital health resources during the COVID-19 pandemic. Caregivers most often provided significant physical care and experienced reduced or no social support during the pandemic. Caregivers reported the need for improving the quality of telehealth services and digital health resources. COVID-19 will not likely be the last pandemic faced by contemporary society. Measures should be taken to reduce the anticipated negative impacts on caregivers and those receiving care during future pandemics.

Family members' experience of integrating chronic illnesses or chronic conditions into family life is valuable information for health care professionals, such as nurses, to understand, improve, and adjust the care provided to families of chronically ill patients. Furthermore, the assessment of the experience of integrating chronic illness into family life can support family nursing interventions and reduce suffering. This study aimed to adapt and psychometrically test a new Likert-type questionnaire on the experience of integrating pediatric chronic illness into family life (EICI-FLQ) in two European samples. A sample of 164 primary caregivers of children/adolescents with chronic illnesses/conditions in Iceland and another sample of 237 primary caregivers with children/adolescents with chronic illnesses/conditions in Portugal completed the online questionnaire. Exploratory factor analysis of the Icelandic sample yielded support for a one-factor solution with acceptable internal reliability (Cronbach's α = .866). Confirmatory factor analysis of the one-factor structure in the Portuguese sample indicated good model fit and similar internal reliability (Cronbach's α = .838). This instrument has good psychometric characteristics and is a promising tool for measuring the experience of integrating pediatric chronic illness into family life in clinical and research settings.

Family-centered intervention can help families facing illness-related issues. We investigated the feasibility of Family and Network Conversations (FNCs) in high-grade glioma patients and their families. Quasi-experimental feasibility study with longitudinal mixed-methods design. Patients and families were invited to three FNCs over 1 year. They completed questionnaires at four time points and expressed their perspectives on the intervention through telephone interviews. Nurses' perspectives were collected in a focus group. Twenty-one patients and 47 family members were included. On average, patients were 66 years old, mainly male, married, living with caregivers, with unifocal cancer. On average, caregivers were 47 years old, mainly female, being spouses or children of the patient. Quantitative and qualitative data did not always match and expanded each other. Nurse-delivered FNCs holistically addressed families' needs while strengthening family's dialogue and union. Nurses felt empowered, underling that advanced competencies were required. Nurse-delivered FNCs are feasible to provide family-centered care, but they should be tailored to each family's needs.

There is increasing evidence that highlights the benefits of Family-oriented Therapeutic Conversations (FAM-TC) for the patient and the family; however, studies show variability regarding the content and the way these interventions are offered. This may hamper its further development in clinical practice. This review systematically maps the available literature on nurse-led FAM-TC and offers a solid synthesis of the characteristic, effectiveness, and feasibility of these interventions. A systematic search in PubMed, CINAHL, Cochrane, Web of Science, PsycINFO, Trip (Turning Research Into Practice), BASE (Bielefeld Academic Search Engine), OATD (Open Access Theses and Dissertations), and ProQuest databases identified 37 studies. The interventions varied in interventionist nurses' profile, the intervention content, or the duration of the sessions offered. Most of the interventions showed beneficial effects on perceived family support and family functioning. This review offers suggestions for future studies, such as the inclusion of specific theoretical frameworks for intervention design, targeting both the patient and the family and offered by nurses with family nursing competency.