Shayleigh Dickson Page, Kylie Trone, Margaret C Souders, Jennifer A Pinto-Martin, Janet A Deatrick
{"title":"The Multidimensional Factors That Influence the Family Management of Autism Spectrum Disorder: A Mixed Methods Study.","authors":"Shayleigh Dickson Page, Kylie Trone, Margaret C Souders, Jennifer A Pinto-Martin, Janet A Deatrick","doi":"10.1177/10748407251333201","DOIUrl":"https://doi.org/10.1177/10748407251333201","url":null,"abstract":"<p><p>Children with autism spectrum disorder (ASD) have complex health needs and co-occurring medical and psychiatric diagnoses. Using the Family Management Style Framework, this convergent parallel mixed methods (QUAN + qual) study: (a) examined the intersection of Ability and Effort to define family management patterns and (b) evaluated the influence of child (ASD-related behaviors, feeding difficulties, sleep disturbances, gastrointestinal symptoms, aggression, self-injury), caregiver (anxiety, depression), and family (social support, unmet social needs) factors on family management pattern. Fifty-six primary caregivers of children with ASD completed the quantitative strand of the study. A nested sample of 30 caregivers participated in semi-structured interviews. The four patterns of family management were similar to those previously identified. Data from quantitative measures and interviews converged to identify that specific child characteristics (ASD behaviors, sleep disturbances, aggression, self-injury) and the caregiver's perceived social support influence family management. Descriptions of family management patterns and their correlates are important to guiding family nursing for this population.</p>","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":" ","pages":"10748407251333201"},"PeriodicalIF":2.6,"publicationDate":"2025-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144057208","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Chronic Illness and Disability: A Multisystemic Practice Model.","authors":"John S Rolland","doi":"10.1177/10748407251329694","DOIUrl":"https://doi.org/10.1177/10748407251329694","url":null,"abstract":"<p><p>Serious health conditions can severely strain family relationships. This article describes the Family Systems Illness (FSI) model to provide a guiding framework to help individuals, couples, and families navigate the changing landscape in the experience of illness and disability over time. This resilience-oriented practice approach distinguishes three dimensions of the illness experience and trajectory over time: (a) \"psychosocial types\" of health conditions, based on the pattern of onset, course, outcome, disability, and level of uncertainty; (b) major developmental phases in their evolution over time (initial crisis, chronic, terminal), facilitating longitudinal thinking about chronic conditions as an ongoing process with transitions and changing demands; (c) key family system variables, emphasizing: the interweaving of illness, individual, and family development; multigenerational themes and legacies related to illness and loss that influence coping and adaptation; family health belief systems (e.g., meaning-making, including influences of culture, ethnicity, spirituality, gender, and race), and the goodness of fit in the patient/family/health care provider relationship. The FSI model is intended for a broad spectrum of health conditions in children and adults, diverse health care professional disciplines, and clinical settings. Discussion includes timely, cost-effective applications in different clinical settings, including the use of prevention-oriented family consultations, psychosocial checkups, and brief and intensive interventions.</p>","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":"31 2","pages":"63-74"},"PeriodicalIF":2.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144024105","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Adriana Maria Duarte, Carla Maria Cerqueira da Silva, Maria do Céu Barbieri-Figueiredo
{"title":"Construction and Validation of a Simulation Scenario for Teaching Family-Focused Care in Pediatric Oncology.","authors":"Adriana Maria Duarte, Carla Maria Cerqueira da Silva, Maria do Céu Barbieri-Figueiredo","doi":"10.1177/10748407231223768","DOIUrl":"10.1177/10748407231223768","url":null,"abstract":"<p><p>Clinical simulation can be a promising teaching strategy to help nurses develop behaviors that improve family care actions, promoting safe and high-quality care. The objective of this study was to build, validate, and test a simulation scenario in pediatric oncology family-focused care (FFC) following an initial diagnosis of cancer. It is a six-step methodological study based on the philosophy of Family-Centered Care (FCC), with a user-centered design. The evaluators established a Content Validity Index (CVI) > 0.8 for validation. Pilot testing included the Simulation Design Scale. The data were analyzed by descriptive statistics. A total of 35 experts participated in this study. All 19 items in the scenario were validated and considered relevant, in a single round, with the item-level CVI ranging between 0.8 and 1 and a scale-level CVI of 0.92. The high-fidelity developed and validated clinical simulation scenario is a consistent tool for the education of advanced practice nurses.</p>","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":" ","pages":"89-105"},"PeriodicalIF":2.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492587","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Barbara K Giambra, Kathleen Knafl, Stephen Haas, Yin Zhang, Nanhua Zhang, Rita H Pickler, Maria T Britto
{"title":"Effects of Family Caregiver-Nurse Communication on Family Management and Family Caregiver Uncertainty Regarding the Care of Children With Long-Term Ventilator Dependence.","authors":"Barbara K Giambra, Kathleen Knafl, Stephen Haas, Yin Zhang, Nanhua Zhang, Rita H Pickler, Maria T Britto","doi":"10.1177/10748407241290300","DOIUrl":"10.1177/10748407241290300","url":null,"abstract":"<p><p>Nurses caring for hospitalized children with long-term ventilator dependence (LTVD) assess family management capability and teach new skills through communication with family caregivers. This theoretically-based quantitative, descriptive study aimed to determine the communication behaviors associated with family caregiver uncertainty and management of the child with LTVD's care after discharge. One hundred families and 48 nurses enrolled. Family caregiver-nurse conversations were recorded and transcripts coded for communication behaviors. Family management and uncertainty data were gathered during hospitalization and after discharge. Data analysis included correlations and linear mixed models. Family caregivers and nurses used advocating and negotiating roles communication behaviors least frequently; however, these communication behaviors were associated with the most aspects in terms of uncertainty about the child's condition and ease of management of the child's care after discharge to home. Nurses should assess family caregiver ease in managing care, provide support, and engage in collaborative problem-solving through respectful communication.</p>","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":" ","pages":"106-121"},"PeriodicalIF":2.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142570051","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"A Duty to Care: Male Perspectives on the Caregiver Role for Persons With Alzheimer's or Dementia.","authors":"Michael V Bueno","doi":"10.1177/10748407231222291","DOIUrl":"10.1177/10748407231222291","url":null,"abstract":"<p><p>The population of family caregivers (FCGs) of persons with Alzheimer's disease and related dementias (ADRD) is growing, as is the proportion of males taking on this traditionally female role. Caregiving research has centered around women due to historic roles, resulting in a knowledge gap regarding male caregiving experiences. The purpose of this qualitative descriptive study was to explore the experiences of male FCGs of people with ADRD. Eleven male caregivers were recruited and interviewed by telephone or Zoom/videoconferencing. Data were analyzed using thematic analysis. Four major themes emerged highlighting males' struggles with the unfamiliar caregiving role and changing identity; their acknowledgment of personal growth and discovery through caregiving; their challenges in finding the \"right\" kind of support; and their perceived reshaping of masculinity through the caregiving role. Male caregivers expressed unique experiences as FCGs. Findings indicate the need for researchers and clinicians to develop tailored support to address their needs.</p>","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":" ","pages":"75-88"},"PeriodicalIF":2.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139418391","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Shannon N Hammer, Janet A Deatrick, Kathleen A Knafl, George J Knafl, Wendy L Hobbie, Evelyn Stevens, Jane E Minturn, Lamia P Barakat
{"title":"Evaluating a Self- and Family Management Framework for Young Adult Survivors of Childhood Brain Tumors.","authors":"Shannon N Hammer, Janet A Deatrick, Kathleen A Knafl, George J Knafl, Wendy L Hobbie, Evelyn Stevens, Jane E Minturn, Lamia P Barakat","doi":"10.1177/10748407251314865","DOIUrl":"10.1177/10748407251314865","url":null,"abstract":"<p><p>This study evaluated adaptations to the revised Self- and Family Management Framework aimed at enhancing support for families of young adult survivors of childhood brain tumors (YAS). Baseline data from condition-focused caregivers of YAS (<i>N</i> = 53) examined correlations between the Framework's Facilitators and Barriers (individual/contextual/clinical factors), Processes (caregiver problem-solving), Proximal Outcomes (YAS self-management, caregiver family management), and Distal Outcomes (YAS/caregiver HRQOL). All aspects of family management were associated with YAS HRQOL; only Parent Mutuality was associated with caregiver HRQOL. Problem-solving was partially supported as a process linked to family management and caregiver HRQOL. Individual/contextual/clinical factors were not associated with problem-solving. Self-management was not associated with problem-solving or HRQOL. Interventions grounded in concepts of family management may improve YAS HRQOL and have future potential for family nursing practice. Further research is needed to understand the divergence between HRQOL findings, partial support for problem-solving, and lack of associations with individual/contextual/clinical factors, and self-management.</p>","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":" ","pages":"140-152"},"PeriodicalIF":2.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143384023","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Family Nursing Network.","authors":"","doi":"10.1177/10748407251337178","DOIUrl":"https://doi.org/10.1177/10748407251337178","url":null,"abstract":"","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":"31 2","pages":"153"},"PeriodicalIF":2.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144030026","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarah J Hoffman, Windy M Fredkove, Maria M Vukovich, Elaine Hsieh, Hsa Moo, Kaziah Josiah, Zamzam Dini
{"title":"Ushering a Witness: A Psychosocial Theory of Maternal Intrafamily Trauma Communication in the Refugee Family System.","authors":"Sarah J Hoffman, Windy M Fredkove, Maria M Vukovich, Elaine Hsieh, Hsa Moo, Kaziah Josiah, Zamzam Dini","doi":"10.1177/10748407241301369","DOIUrl":"10.1177/10748407241301369","url":null,"abstract":"<p><p>The ways that families communicate about traumatic experiences is a critical social process. Intrafamily trauma communication encompasses approaches through which family members share and respond to difficult past experiences. We examined the embedded communication processes and actions of war-affected Karen maternal caregivers living post-resettlement in the United States, as they described disclosures of torture and war trauma experiences to their children. Using a modified approach to a constructivist-oriented grounded theory, we analyzed 33 in-depth qualitative interviews. <i>Narrative experiences of mothers and synthesized storylines shaped a psychosocial theory of maternal intrafamily trauma communication, Ushering a Witness</i>. The core category was depicted by the coalescence of three distinct conceptual, temporal phases and corresponding properties: (a) Appraising: Communication decision-making, (b) (Co-)Constructing: Act of communicating, and (c) Amending: Developing awareness and reevaluating purpose, response, and approach to communication. Findings will facilitate further exploration of the relationships between the intergenerational effects of trauma and intergenerational communication.</p>","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":" ","pages":"122-139"},"PeriodicalIF":2.6,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142873420","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Christine Meng, Safira Lachapelle, Adebusola Adekoya, Lucy Kervin, Kishore Seetharaman, Koushambhi Basu Khan, Jennifer Baumbusch
{"title":"Using a Trauma-Informed Care Approach to Understand Family Caregivers' Experiences of Accessing Formal Supports in Dementia Care.","authors":"Christine Meng, Safira Lachapelle, Adebusola Adekoya, Lucy Kervin, Kishore Seetharaman, Koushambhi Basu Khan, Jennifer Baumbusch","doi":"10.1177/10748407251314549","DOIUrl":"10.1177/10748407251314549","url":null,"abstract":"<p><p>Family caregivers provide essential care and support for individuals living with dementia, yet their contributions and needs are often unrecognized within formal health care systems. Over time, this marginalization can contribute to long-term trauma. Guided by a trauma-informed care (TIC) framework, we explored the experiences of 15 family caregivers in a longitudinal, qualitative study. Set in British Columbia, Canada, data were collected through semi-structured interviews and reflective diaries. Data were analyzed using inductive-deductive thematic analysis. Deductive analyses demonstrated that participants' experiences aligned with existing TIC principles. Inductive analysis identified \"Uncertainty\" as a novel principle, reflecting the ongoing challenges caregivers face from diagnosis to the inadequacy of in-home supports. Our study highlights the importance of recognizing trauma induced by interactions with formal health care services and the value of using a TIC approach with family caregivers of people living with dementia.</p>","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":" ","pages":"3-15"},"PeriodicalIF":2.6,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11843802/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143366502","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Family Nursing Network.","authors":"","doi":"10.1177/10748407251318898","DOIUrl":"https://doi.org/10.1177/10748407251318898","url":null,"abstract":"","PeriodicalId":50193,"journal":{"name":"Journal of Family Nursing","volume":"31 1","pages":"58"},"PeriodicalIF":2.6,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143469830","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}