Search

Hospice cancer caregivers' (HCCs') burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. Hospice cancer caregiver daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs' day-to-day burden and unmet needs with prospective HCC (N = 50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs' burden were dissonance between how they "should" feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs' experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process, and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs. [ABSTRACT FROM AUTHOR]

To examine preliminary effects of ReStoreD (Resilience after Stroke in Dyads) on resilience in couples coping with stroke-related challenges. Supplemental analysis of prospective pilot trial with pre-/post-assessments and 3-month follow-up. Community. Thirty-four cohabitating stroke-care partner dyads (N=34); at least 3 months post-stroke. 8-week self-administered dyadic intervention (ReStoreD) consisting of activities completed individually and as a couple. 10-item Connor-Davidson Resilience Scale. Care partner baseline resilience scores were significantly higher than persons with stroke scores. Repeated-measures analysis of variance suggest significant pre-post improvement in resilience for persons with stroke (mean difference [I - J]=-2.42, SE=.91, P =.04, 95% CI [-4.75, -0.08]) with a large effect size (η2=.34), which was maintained at 3-month follow-up. Care partners showed no significant change over time. This study provides preliminary evidence that ReStoreD improves resilience in persons with stroke. More research is needed to address resilience in care partners. These findings represent a promising first step to address the mental health needs in this population. [ABSTRACT FROM AUTHOR]

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88. 37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [ORadj], 1.15, [1.05, 1.26]; P = .004), rest (ORadj, 1.11, [1.01, 1.22]; P = .031), and slow down when ill (ORadj, 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (ORadj, 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has dramatically changed social life. This secondary qualitative analysis aimed to better understand the impact of the pandemic on bereaved hospice family caregivers' experiences of social connection and isolation in a time of social distancing and general anxiety. Six caregivers in 3 states recorded audio diaries (N = 59) between March 13 and May 15, 2020. Caregivers were, on average, 56.80 years old (SD, 14.22; range, 32-67 years old) and consisted of spouses (n = 2), adult children (n = 3), and a sibling (n = 1). Using NVIVO 12, caregiver diaries were coded for (1) "social connection" (n = 23), defined as being able to access or seeking informal or formal social support networks; (2) "isolation" (n = 17), defined as being unable or reluctant to access informal or formal social support networks, or feeling alone; and (3) "bereavement processes" (n = 147), informed by the dual process model of bereavement (restoration and loss-oriented stressors). Content analysis revealed that caregivers were able to connect with others despite physical distancing expectations, expressed loneliness and grief while in isolation, and described moving on in the face of uncertainty. Findings provide insight into how caregivers experienced bereavement during the initial period of the pandemic and highlight implications for hospice bereavement services. [ABSTRACT FROM AUTHOR]

Traditionally, basic scientists have not been as engaged in the translational continuum when it comes to engagement with patients, caregivers, and other community stakeholders. In order to address this discrepancy, a multi-disciplinary team at Moffitt Cancer Center conceived of and enacted the Patient-Researcher Forum (PRF) to promote a community-engaged research approach through communication, compassion, and bi-directional research insight for both patients/caregivers and researchers. We outline the structure and implementation of the PRF, its participants, and qualitative and quantitative results across 14 sessions. PRF sessions were conducted between July 2018 and October 2019 and included 29 patients/caregivers and close to 200 researcher/staff participants; post participation survey response rates assessing the PRF experience were 27.6% (patients/caregivers) and 60.3% (researchers) on average. Research staff overwhelmingly reported that the PRF was beneficial, citing that it helped them gain new patient-centered perspectives and helped them practice communicating research to lay audiences. Patients/caregivers also reported that the PRF was valuable, indicating that they gained a better understanding of research and that they developed a personal connection with researchers. Our PRF model may provide a strategy for improving basic scientist communication, ethics, and understanding of research impacts on the populations they wish to serve. This innovative model provides a much-needed direct connection between basic scientists and patients/caregivers which creates a 2-way learning platform that fosters understanding and research ideas in the spirit of community-engaged research. [ABSTRACT FROM AUTHOR]

Hospice aides are integral to the delivery of home hospice care and play an essential role in the effective communication and collaboration of the hospice interdisciplinary team. Despite their critical role, little is known about hospice aides' perceptions of their role in providing hospice services. This qualitative study explores hospice aides' perspectives of their work; their relationships with patients, families, and interdisciplinary team members; and their contributions to end-of-life care. Two focus groups of hospice aides (N = 13) and 16 hours of observation of in-home caregiving were conducted. Focus group data were inductively and iteratively coded, and three themes were identified: (1) "We"re the eyes and ears," (2) "We're kept out of the loop," and (3) "We have no voice." Aides described themselves as frontline providers based on the close relationships they formed with patients and family members yet felt underrecognized by members of the hospice team. Observational field noteswere reexaminedwith themes to confirm convergence of qualitative and observational data. Better understanding of their role could enhance the integration of aides into patient- and family-centered team interactions, leading to both improved patient and family outcomes and retention and support of this critical component of the hospice workforce. [ABSTRACT FROM AUTHOR]

Objectives To provide a definition of spirituality, define the scope and nature of spiritual care communication, describe how to initiate communication about, and elicit, a spiritual history, and introduce the AMEN protocol to support patient/family hopes for a miracle. Data Sources Literature review. Conclusion Spiritual communication is important throughout cancer care. Nurses can assess and integrate patient and family caregivers' spiritual needs in clinical care by practicing self-awareness and engaging in spiritual care communication strategies. Implications for Nursing Practice Spirituality is recognized as an essential component of quality care. Spiritual conversations can increase patients' satisfaction with care and improve well-being. [ABSTRACT FROM AUTHOR]

Home hospice providers are concerned with family caregiver perceptions of the quality of care and support offered, and more research is needed to understand experiences of family caregivers and what 'support' means to them. We compared perceptions of caregiver needs from family caregivers and hospice nurse care managers who participated in focus groups. Discussions were audio-recorded, transcribed, inductively coded, an qualitatively analyzed to describe patterns and themes. Caregivers described information, explanation, trust, an respect as their greatest needs. Nurses also described information as the most critical need of caregivers, followed by instruction, honesty, and reassurance. Although these concepts shared similarities, caregivers and nurses related them differently to caregiver support Both groups focused on relationship building, suggesting 2 themes that highlighted both contrasts and mutual understanding of the importance of effective relationship 'breaking it down to build it up' and 'doing to, doing for, or doing with.' Caregivers and nurses cited similar concepts as essential for successful relationships between caregivers and the hospice team, but how they describe them differed, and these differences shape perceptions of support. Greater understanding of similarities and differences could inform and improve training and education programs for hospice teams. [ABSTRACT FROM AUTHOR]

Home hospice providers are concerned with family caregiver perceptions of the quality of care and support offered, and more research is needed to understand experiences of family caregivers and what "support" means to them. We compared perceptions of caregiver needs from family caregivers and hospice nurse care managers who participated in focus groups. Discussions were audio-recorded, transcribed, inductively coded, an qualitatively analyzed to describe patterns and themes. Caregivers described information, explanation, trust, an respect as their greatest needs. Nurses also described information as the most critical need of caregivers, followed by instruction, honesty, and reassurance. Although these concepts shared similarities, caregivers and nurses related them differently to caregiver support Both groups focused on relationship building, suggesting 2 themes that highlighted both contrasts and mutual understanding of the importance of effective relationship "breaking it down to build it up" and "doing to, doing for, or doing with." Caregivers and nurses cited similar concepts as essential for successful relationships between caregivers and the hospice team, but how they describe them differed, and these differences shape perceptions of support. Greater understanding of similarities and differences could inform and improve training and education programs for hospice teams. [ABSTRACT FROM AUTHOR]

Interactions among hospice care providers and caregivers are a promising area of exploration, as we seek to better understand the context of hospice care and how to support those engaged in this complex relationship. This study examines patterns within naturally occurring speech between nurses and family caregivers during hospice visits. Based on previous work, we propose that nurse communication can be more or less facilitative or directive in style and this in turn shapes nurse-family caregiver interactions. We analyzed nurse-caregiver speech interactions recorded during seven hospice encounters. Findings show significant differences in the speech patterns associated with facilitative or directive styles. Directive styles tended to be denser and nurse oriented and offered less opportunity for caregiver self-expression, while facilitative styles were more caregiver oriented and more vivid and responsive and made more space for caregiver expression. There were also significant differences in the amount of cognitive, emotional, or task-oriented speech and how these terms shaped the nature and focus of the interactions. This study provides empirical support for best communication practices and may help us better understand how specific communication patterns facilitate positive outcomes by supporting caregivers' own needs for interaction and self-expression. [ABSTRACT FROM AUTHOR]

Background: Individuals with a disability and their partners, who often provide care, are both at risk for depression and lower quality of life. Mobile health (mHealth) interventions are promising to address barriers to mental health care. Rehabilitation researchers and software development researchers must collaborate effectively with each other and with clinical and patient stakeholders to ensure successful mHealth development. Objective: This study aimed to aid researchers interested in mHealth software development by describing the collaborative process between a team of rehabilitation researchers, software development researchers, and stakeholders. Thus, we provide a framework (conceptual model) for other teams to replicate to build a Web-based mHealth app for individuals with physical disability. Methods: Rehabilitation researchers, software development researchers, and stakeholders (people with physical disabilities and clinicians) are involved in an iterative software development process. The overall process of developing an mHealth intervention includes initial development meetings and a co-design method called design box, in which the needs and key elements of the app are discussed. On the basis of the objectives outlined, a prototype is developed and goes through scoping iterations with feedback from stakeholders and end users. The prototype is then tested by users to identify technical errors and gather feedback on usability and accessibility. Results: Illustrating the overall development process, we present a case study based on our experience developing an app (SupportGroove) for couples coping with spinal cord injury. Examples of how we addressed specific challenges are also included. For example, feedback from stakeholders resulted in development of app features for individuals with limited functional ability. Initial designs lacked accessibility design principles made visible by end users. Solutions included large text, single click, and minimal scrolling to facilitate menu navigation for individuals using eye gaze technology. Prototype testing allowed further refinement and demonstrated high usability and engagement with activities in the app. Qualitative feedback indicated high levels of satisfaction, accessibility, and confidence in potential utility. We also present key lessons learned about working in a collaborative interdisciplinary team. Conclusions: mHealth promises to help overcome barriers to mental health intervention access. However, the development of these interventions can be challenging because of the disparate and often siloed expertise required. By describing the mHealth software development process and illustrating it with a successful case study of rehabilitation researchers, software development researchers, and stakeholders collaborating effectively, our goal is to help other teams avoid challenges we faced and benefit from our lessons learned. Ultimately, good interdisciplinary collaboration will benefit individuals with disabilities and their families. [ABSTRACT FROM AUTHOR]

Caregivers of allogeneic hematopoietic cell transplant (HCT) patients experience high levels of stress, and a better understanding of the commonly used coping strategies can guide intervention development. Mindfulness-based interventions are one promising approach that could augment and extend existing coping strategies. This study examined in-depth phone interviews conducted with HCT caregivers to gather information about coping strategies used to manage stress and other difficult emotions while taking care of their patient. Participants (N = 18; 55% female) completed phone interviews, which were transcribed and hand-coded for analysis. Thematic content analysis was used to code responses. Five primary coping strategy themes were reported: physical activity, spirituality, hobbies, social support, and avoidance. Caregivers also provided information about what they gained from the caregiving experience (e.g., increased empathy). Based on these findings and in an effort to move the intervention development field forward, a discussion is presented on how mindfulness-based strategies have the ability to augment existing coping strategies and perhaps modify unhelpful strategies. [ABSTRACT FROM AUTHOR]