Browsing by Subject "caregiver"

Now showing 1 - 5 of 5
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    Caregiver Engagement in Serious Illness Communication in a Long-Term Acute Care Hospital Setting
    (Sage, 2024-10) Levoy, Kristin; Ashare, Rebecca L.; Ganta, Niharika; O'Connor, Nina; Meghani, Salimah H.; Ashare, Rebecca; School of Nursing
    Context Prolonged management of critical illnesses in long-term acute care hospitals (LTACH) makes serious illness communication (SIC), a clinical imperative. SIC in LTACH is challenging as clinicians often lack training and patients are typically unable to participate—making caregivers central. Objectives This qualitative descriptive study characterized caregiver engagement in SIC encounters, while considering influencing factors, following the implementation of Ariadne Labs’ SIC training at a LTACH in the Northeastern United States. Methods Clinicians’ documented SIC notes (2019-2020) were analyzed using directed content analysis. Codes were grouped into four categories generated from two factors that influence SIC—evidence of prognostic understanding (yes/no) and documented preferences (yes/no)—and caregiver engagement themes identified within each category. Results Across 125 patient cases, 251 SIC notes were analyzed. In the presence of prognostic understanding and documented preferences, caregivers acted as upholders of patients’ wishes (29%). With prognostic understanding but undocumented preferences, caregivers were postponers of healthcare decision-making (34%). When lacking prognostic understanding but having documented preferences, caregivers tended to be searchers, intent on identifying continued treatment options (13%). With poor prognostic understanding and undocumented preferences, caregivers were strugglers, having difficulty with the clinicians or family unit over healthcare decision-making (21%). Conclusion The findings suggest that two factors—prognostic understanding and documented preferences—are critical factors clinicians can leverage in tailoring SIC to meet caregivers’ SIC needs in the LTACH setting. Such strategies shift attention away from SIC content alone toward factors that influence caregivers’ ability to meaningfully engage in SIC to advance healthcare decision-making.
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    Caregiver-Focused Evaluations to Assist Therapists in Addressing Family Mealtime Stress: A Doctoral Capstone Project
    (2022-05-02) Lentz, Jordan N.; Chase, Tony; Department of Occupational Therapy, School of Health and Human Sciences; Wasemann, Colleen
    This paper will discuss the doctoral capstone process and evaluate the findings of a quality improvement project focused on implementing mealtime-focused assessments with caregivers for therapists to better address the mealtime stress of families, thus creating caregiver-focused evaluations. Before beginning this study, a needs assessment was conducted at Feeding Friends, a pediatric feeding clinic in Indianapolis, to identify gaps in caregiver-focused evaluations within this organization. From there, a comprehensive literature review was conducted to further examine assessments and evidence-based strategies used in therapy to address mealtime stress in families of children with disabilities. Finally, a 14-week study took place examining the effectiveness of two different mealtime-focused assessments in better informing therapists of caregiver stress during the mealtime process. The therapists then completed pre-and post-surveys allowing the researchers to gather information regarding the use of the assessments as well as potential sustainability plans. Through these assessments, therapists successfully applied results to clinical practice while better addressing communication, goal development, and guidance with caregivers; therefore, resulting in improved caregiver-focused evaluations. Overall, therapists found the Wasemann Confidence Rating Scale to be the most beneficial assessment in achieving this goal.
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    Promoting Family Engagement in a Community Setting for Children Impacted by the Substance Use Disorder of a Family Member
    (2024-05) Greenwell, Conner; Belkiewitz, Johnna; Department of Occupational Therapy, School of Health and Human Sciences; McFadden, Rachel
    Individuals caring for children impacted by the substance use disorder of a family member are often less able to participate in valued occupations, specifically social participation, and they lack a community in which they feel supported and understood. The capstone student collaborated with Camp Mariposa Aaron’s Place in Indianapolis, IN and Mitchell, IN, with the purpose of promoting family and peer engagement for caregivers of children who attend this program. The student identified a gap in current research on how to best support caregivers of children affected by the substance use disorder of a family member. The main component of this project was evaluation and further development of Camp Village Council, a support program for family members of children who attend Camp Mariposa Aaron’s Place. The student created an intervention binder, educational modules, and educational handouts to promote connectedness between group members and to provide caregivers with an improved ability to carry over what kids are learning at camp into the home. Another component of this project was supplemental programming of family events to promote family engagement. Overall, results suggest that groups facilitated by the student and materials created by the student had a positive impact on the Camp Village Council participants and program as a whole. Results were mixed on the impact of supplemental programming.
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    Rural Hospice Caregivers and the Social Workers Who Support Them: A Mixed Methods Study
    (2024-12) Curd, Jessica Lind Ann; Pierce, Barbara; Hong, Michin; Lee, Jessica; Nguyen, Thu Suong Thi
    This study aimed to explore the experiences of rural caregivers for dying individuals and the hospice social workers who support them, with a focus on the Covid- 19 pandemic and its recovery phases. This study also investigated stress, secondary trauma, anticipatory grief, social support, and health disparities among home informal caregivers of dying persons, as well as stress and secondary trauma among hospice social workers. This study employed a mixed method approach to explore the factors affecting rural caregivers and hospice social workers. This allowed for a comprehensive understanding of their experiences. Initial analysis of means revealed moderate to high levels of anticipatory grief, secondary trauma, and caregiver stress among end-of-life caregivers. To explore the interactions between these variables, a multiple linear regression analysis was conducted using data from 107 caregivers. Each regression model (Caregiver Stress, Secondary Trauma, and Anticipatory Grief) was statistically significant. Results indicated that anticipatory grief, secondary traumatic stress, and caregiver stress co-vary and are influenced by perceived social support. Qualitative findings from caregiver interviews supported the quantitative results. Seven themes emerged: "no time to grieve but I am grieving," "feeling alone," "structure and routine help," "meaning making," "building a 'new normal'," "going into their world," and "impact ofCovid-19 pandemic." Interviews with 19 hospice social workers revealed moderate to high levels of anticipatory grief and secondary traumatic stress. Six themes emerged: "feeling disconnected and less effective," "grief regarding loss of no1malcy," "no longer 'heroes'," "false sense of security," "closer with peers and distanced from leaders," and "systemic barriers." Overall, this study sheds light on the specific stressors and emotional challenges faced by rural end-of-life caregivers and social workers. It highlights their resilience and adaptability in the face of adversity. The findings underscore the need for targeted support systems and interventions to address the mental health and well-being of these essential yet often overlooked members of the healthcare community. Additionally, the research contributes valuable insights to the broader discourse on the importance of social support in mitigating the effects of stress and trauma in caregiving professions.
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    Tracking Patterns of Needs During a Telephone Follow-up Program for Family Caregivers of Persons with Stroke
    (Taylor and Francis, 2016-09) Bakas, Tamilyn; Jessup, Nenette M.; McLennon, Susan M.; Habermann, Barbara; Weaver, Michael T.; Morrison, Gwendolyn; Economics, School of Liberal Arts
    Purpose Programs that address stroke family caregiver needs and skill-building are recommended based on the literature and patient care guidelines for stroke rehabilitation. The purpose of this study was to explore patterns of perceived needs and skill-building during a stroke caregiver intervention program. Method Descriptive statistics were used to analyze data from 123 stroke caregivers enrolled in the intervention group of a randomized controlled clinical trial. Caregivers received 8 weekly telephone sessions, with a booster session a month later. At each session, the Caregiver Needs and Concerns Checklist (CNCC) was used to identify and prioritize current needs that were then addressed through skill-building strategies. Results Perceived needs changed over time. Information about stroke was the highest priority need during Session 1. Managing survivor emotions and behaviors was the highest priority for Sessions 2 through 4. Caregivers generally waited until Sessions 5 through 9 to address their own emotional and physical health needs. Physical and instrumental care needs were relatively low but stable across all 9 sessions. Skill-building was consistently high, though it peaked during Sessions 2 and 3. Conclusions Tracking patterns of needs and skill-building suggest appropriate timing for targeting different types of family caregiver support during stroke rehabilitation.