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Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.

Background/Aims Numerous changes can occur between the original design plans for clinical trials, the submission of funding proposals, and the implementation of the clinical trial. In the hospice setting, environmental changes can present significant obstacles, which require changes to the original plan designs, recruitment, and staffing. The purpose of the study was to share lessons and problem-solving strategies that can assist in future hospice trials. Methods This study uses one hospice clinical trial as an exemplar to demonstrate challenges for clinical trial research in this setting. Using preliminary data collected during the first months of a trial, the research team details the many ways their current protocol reflects changes from the originally proposed plans. Experiences are used as an exemplar to address the following questions: 1) How do research environments change between the initial submission of a funding proposal and the eventual award? 2) How can investigators maintain the integrity of the research and accommodate unexpected changes in the research environment? Results The changing environment within the hospice setting required design, sampling, and recruitment changes within the first year. The decision-making process resulted in a stronger design with greater generalization. As a result of necessary protocol changes, the study results are positioned to be translational following the study conclusion. Conclusion Researchers would do well to review their protocol and statistics early in a clinical trial. They should be prepared for adjustments to accommodate market and environmental changes outside their control. Ongoing data monitoring, specifically related to recruitment, is advised.

ObjectiveHospice nurses frequently encounter patients and families under tremendous emotional distress, yet the communication techniques they use in emotionally charged situations have rarely been investigated. In this study, researchers sought to examine hospice nurses’ use of validation communication techniques, which have been shown in prior research to be effective in supporting individuals experiencing emotional distress.MethodResearchers performed a directed content analysis of audiorecordings of 65 hospice nurses’ home visits by identifying instances when nurses used validation communication techniques and rating the level of complexity of those techniques.ResultAll nurses used validation communication techniques at least once during their home visits. Use of lower level (i.e., more basic) techniques was more common than use of higher level (i.e., more complex) techniques.Significance of ResultsAlthough hospice nurses appear to use basic validation techniques naturally, benefit may be found in the use of higher level techniques, which have been shown to result in improved clinical outcomes in other settings.

Family caregivers face ongoing, formidable stress and burden. Caregivers need sustainable support to maintain resilience. We aim to identify challenges, possible solutions that are resources for resilience, and expected consequences from the perspective of 39 family caregivers of hospice patients with dementia. The resilience framework was used to guide the coding and synthesis of the qualitative data. Identified challenges included difficulties in communication, providing care and decision-making, lack of knowledge, emotional challenges, concern about care facility selection, death with dignity, and lack of public awareness. Resilience resources for caregiving challenges were identified at the individual, community, and societal levels. Anticipated benefits of using these resources included the ability to provide better care and have a better quality of life for both patients and caregivers. The findings of this study can guide the design and implementation of supportive interventions designed for family caregivers of hospice patients with dementia to bolster available resilience resources.

Context There is a need for brief measurement instruments that do not cause burden to hospice caregivers. The Caregiver Quality of Life Index (CQLI) has been used in several studies, but assessment of its psychometric properties has been minimal. The CQLI-R (revised) instrument was found to have equivalent properties but also has had minimal testing in small samples. Objective This study sought to evaluate the reliability and validity of the CQLI-R. Methods Data were used from three hospice clinical trials. Reliability was assessed using test-retest and an item analysis. Construct validity was evaluated by comparing items to similar items within the same data set. Results Test-rest and item analysis found moderate-to-good reliability. Construct validity found significance in comparison of CQLI-R items with those of similar instruments. Conclusions The CQLI-R is an easy-to-use instrument to assess caregiver quality of life. Despite adequate reliability and construct validity, further evidence is needed to support content validity.

End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.

Fourteen ( N = 14) bereaved family members participated in an exploratory study of Digital Storytelling as a bereavement intervention. The primary purpose of this study was to examine the feasibility of this approach and to qualitatively assess potential impacts. Qualitative data revealed that for some, participation in Digital Storytelling facilitated growth and meaning-making. Themes from the data also revealed that participation in Digital Storytelling affected participants in these ways: (a) the writing and verbalization of the script helped participants organize their thoughts and emotions about the loss, (b) having the space to share with a collective group encouraged confidence in their ability to discuss their feelings with others, and (c) the final product served as a source of closure for participants. Although this was a small exploratory study, results were promising and suggest the clinical applicability of Digital Storytelling as a tool for facilitating meaning-making among bereaved family members.

Rural communities are home to a disproportionate number of older adults, many of whom are living with a serious illness or providing care to a seriously ill family member or friend. For these individuals, hospice and palliative care services can provide much-needed biopsychosocial and spiritual support, leading to an enhanced quality of life. Technologically-mediated interventions hold promise as a strategy to bridge geographic distances between healthcare providers and rural elders; however, the effect of such interventions may be greater when they are designed in a manner congruent with rural culture and compatible with the technological infrastructure common in rural areas. Informed by lessons learned during a pilot study of a telehealth intervention in one Midwestern state (R21CA191165), this presentation includes a discussion of strategies to more effectively recruit, engage, and retain rural older adults into studies testing technologically-mediated interventions for hospice and palliative care patients and their families.

Objectives Older adults in need of residential services are increasingly spending their final days in small, domestic-style care settings such as adult family homes. In this study, we sought to identify processes that facilitated the provision of quality hospice care to seriously ill residents of adult family homes and their family members. Design We conducted a secondary analysis of qualitative data collected as part of a randomized clinical trial of a problem-solving intervention for family members of hospice patients. Setting The original trial was conducted in partnership with 2 large, community-based hospice agencies in the state of Washington. Participants Data from 73 family members of residents of adult family homes receiving hospice services were included in the analysis. Measurements Data were collected via semi-structured individual interviews, which were audio-recorded and transcribed prior to analysis. Results Family members described quality hospice care in the adult family home as care that is consistent with residents and families' values and that results in comfort and social connectedness for residents while promoting peace of mind and decreasing burden for residents' families. They identified numerous processes that facilitated the provision of quality care including personalizing care, sharing information and expertise, working together to resolve conflicts, and prioritizing residents and families' values over existing or competing philosophies of care. Conclusion The adult family home setting can amplify both the benefits and challenges associated with receipt of hospice. When choosing an adult family home, older adults and their families should strongly consider selecting a home with a track record of positive collaborations with hospice agencies if the need for end-of-life care is anticipated.

Researchers have identified important gender differences in the experience of caring for a family member or friend living with advanced disease; however, trends suggest that these differences may be diminishing over time in response to changing gender roles. In addition, while many studies have found caregiving experiences and outcomes to be poorer among female caregivers, noteworthy exceptions exist.The primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender.We conducted a secondary analysis of data from a multisite randomized controlled trial of a family caregiving intervention performed between 2010 and 2014. We compared female and male hospice family caregivers on baseline variables using χ(2) tests for association of categorical variables and t-tests for continuous variables. Our sample included 289 family caregivers of individuals receiving services from one of two hospice agencies located in the northwestern United States. Demographic data and other categorical variables of interest were provided via caregiver self-report using an instrument created specifically for this study. Reaction to caregiving and caregiving burden were measured using the Caregiver Reaction Assessment (CRA).As it related to caregiving, females had significantly lower self-esteem and more negative impact on their schedule, health, and family support than males. No gender differences were detected with regard to the impact of caregiving on individuals' finances.Despite changing social expectations, pronounced gender differences persist in caregiving at the end of life.

The purpose of this study was to describe the unique characteristics of informal hospice cancer caregiving.Researchers conducted a secondary analysis of data drawn from a randomized clinical trial of an informal hospice caregiving intervention (N = 348). Demographic characteristics and measures of the informal caregiving experience of hospice patients and their informal caregivers were compared based on the patient's diagnosis using chi-square tests for association of categorical variables and t tests for continuous variables.Informal caregivers of cancer patients differed from their non-cancer counterparts in a number of respects including patient age, caregiver age, patient residence, relationship between patient and caregiver, amount and duration of care provided, likelihood to incur out-of-pocket expenses related to patient care, caregiver problem-solving style, and impact on caregiver daily schedule. There were no statistically significant differences between cancer and non-cancer caregivers in terms of gender, race, employment status, anxiety, and quality of life.While cancer and non-cancer caregivers are similar in many respects, a number of unique features characterize the informal hospice cancer caregiving experience. Attention to these unique features will allow hospice providers to tailor supportive care interventions to better address cancer caregivers' needs.

Research has documented numerous benefits and challenges associated with receipt of hospice care in nursing homes; however, study of this partnership from the perspective of residents’ family members has been limited. The purpose of this qualitative investigation was to explore family members’ experience with hospice services received in the nursing home setting. Researchers conducted a secondary data analysis of 175 family member interviews using a thematic analytic approach. Findings highlighted the critical role of communication in supporting residents and their family members. Care coordination, support and oversight, and role confusion also impacted family members’ experience of hospice care in the nursing home. Efforts directed at enhancing communication and more clearly articulating the roles of members of the health care team are indicated.

Those caring for their loved ones in hospice experience tremendous stress, being faced with numerous decisions as they work to manage the pain experienced by their loved one. Although hospice care teams create pain management strategies, it is the role of the caregiver to implement these plans.The purpose of this study was to further understand the hospice caregiver experience relating to pain management.Semistructured interviews with 146 caregivers provided data for the study. Responses to seven questions asking for a ranking of end-of-life pain management indicated a less than ideal experience. Available narratives from 38 caregivers were analyzed for themes related to further understanding of the concerns.Five themes were identified in the data including difficulty with administration of pain medicines, concerns about side effects of medications, insecurity with pain assessment, frustrations with communication among health care team members, and memories of unrelieved pain.These findings should raise concern among hospice professionals, whose commitment is to the management of pain, including emotional pain, with a focus on both the patient and the family as a unit of care. These data clearly suggest that hospice providers have an opportunity to be sensitive to perceptions held by caregivers regarding pain management. Effective planning for pain control must incorporate the values and beliefs not only of each patient but also of the family caregiver.

Terminal illness affects the entire family, both the one with the illness and their loved ones. These loved ones must deal not only with the loss but with the challenges of managing daily care. The purpose of the systematic review of the peer-reviewed literature was to identify and explore depression and related interventions for caregivers of hospice patients. While the prevalence of depression reported in the identified studies of hospice caregivers ranges from 26-57%, few interventions specific to this population have been tested and the research methods have been only moderately rigorous.

This study used participant feedback to qualitatively evaluate an intervention (Assessing Caregivers for Team Intervention through Videophone Encounters [ACTIVE]) that used videophone technology to include patients and/or their family caregivers in hospice interdisciplinary team meetings. Data were generated during individual interviews with hospice staff members and family caregivers who participated in ACTIVE intervention. Modified grounded theory procedures served as the primary analysis strategy. Results indicated that ACTIVE intervention enhanced team functioning in terms of context, structure, processes and outcomes. Participants discussed challenges and offered corresponding recommendations to make the intervention more efficient and effective. Data supported the ACTIVE intervention as a way for hospice providers to more fully realise their goal of maximum patient and family participation in care planning.

Hospice agencies are required to schedule and conduct Interdisciplinary Team meetings; however, little guidance exists as to how these meetings should be conducted. The purpose of this study was to apply the Time, Interaction and Performance theory to gain a better understanding of Interdisciplinary Team meetings. A total of 81 patient care discussions on 24 patients by four interdisciplinary hospice teams were videotaped in the time frame from December 2006 to April 2007 and transcribed. A total of 1,982 utterances were recorded. The utterances were analyzed using thematic content analysis. Nurses had the most utterances in relation to team production, defining patient needs and meeting defined goals. Additionally, nurses had the most utterances in relation to scheduling and synchronization of activities. Two specific areas in need of enhancement were noted, improvement in team member support and communication effectiveness. Future interventions targeting these areas of need may increase coordination of services which results in patient and family satisfaction and reduced overall health care costs.