Comfort Needs of Cancer Family Caregivers in Outpatient Palliative Care.

Rapid expansion of outpatient palliative care has been fueled by the growing number of people living with cancer and other chronic illnesses whose symptoms are largely managed in the community rather than inpatient settings. Nurses and other palliative care professionals support seriously ill patients and their families, yet little research has specifically examined the needs of cancer family caregivers receiving services from outpatient palliative care teams. To address this gap in the knowledge base, researchers conducted a reflective thematic analysis of qualitative interviews conducted with 39 family caregivers, using Comfort Theory as a theoretical guide. Seven themes describing caregivers' comfort needs were identified, including the need to understand, need for self-efficacy, need to derive meaning, need for informal support, need for formal support, need for resources, and need for self-care. Findings have clear implications for palliative nursing, as they directly address cancer family caregivers' needs in 5 of the 8 domains of care delineated by the National Consensus Project for Quality Palliative Care's Clinical Practice Guidelines. Comprehensive, holistic nursing assessment is suggested to identify family caregivers' needs and plan for delivery of evidence-based interventions shown to decrease burden and improve quality of life.

Differential effects of patient symptom subtypes on informal hospice caregiver depression.

ABSTRACTObjective:Researchers sought to determine the extent to which burden related to patients' symptom subtypes could predict informal hospice caregiver depression, and to illustrate the differences between caregivers who experience suicidal ideation and those who do not. METHOD: Informal caregivers recruited from a not-for-profit community-based hospice agency participated in a cross-sectional survey. Self-report questionnaires assessed caregiver burden associated with patient symptomatology (via a modified version of the Memorial Symptom Assessment Scale-Short Form) and caregiver depressive symptoms, including suicidal ideation (measured by the Patient Health Questionnaire-9). Multiple regressions evaluated the unique predictability of patients' symptom subtypes on caregiver depression. Exploratory analyses examined mean differences of study variables between participants who did and did not endorse suicidal ideation. RESULTS: Caregiver burden related to patients' psychological symptoms accounted for significant variance in caregiver depression scores when controlling for burden related to physical symptoms. Among 229 caregivers (M age = 61.4 years), 12 reported suicidal ideation, where 6 of the 12 were male, despite male caregivers comprising less than 20% of the total sample. SIGNIFICANCE OF RESULTS: Burden associated with patients' psychological symptoms uniquely contributed to caregiver depression, further highlighting the clinical utility and necessity for hospice providers to address the emotional needs of patients and their caregivers alike. Developing clinical procedures to identify and respond to such needs would not only behoove hospice agencies, but it would likely enhance the caregiving experience holistically, which might be particularly imperative for male caregivers.

Understanding Older Adult Use of Data Visualizations as a Resource for Maintaining Health and Wellness.

To better understand how older adults use health visualizations and the potential barriers that impact utility, we conducted semistructured interviews with 21 older adults. Within these sessions, we presented participants with two interactive visualizations for exploration. Through an affinity mapping exercise, we extracted five key themes associated with how older adults utilize health visualizations and provide corresponding recommendations as points of consideration for designers developing older adult focused health visualizations. By examining how older adults perceive the utility of health visualizations, we lay the groundwork for design choices that impact eventual use and adoption of systems that generate data for such visualizations.

Pilot testing a digital pet avatar for older adults.

Social isolation in older adults is a major public health concern. An embodied conversational agent (ECA) has the potential to enhance older adults' social interaction. However, little is known about older adults' experience with an ECA. In this paper, we conducted a pilot study to examine the perceived acceptance and utility of a tablet-based conversational agent in the form of an avatar (termed "digital pet") for older adults. We performed secondary analysis of data collected from a study that employed the use of a digital pet in ten older adults' homes for three months. Most of the participants enjoyed the companionship, entertainment, reminders, and instant assistance from the digital pet. However, participants identified limited conversational ability and technical issues as system challenges. Privacy, dependence, and cost were major concerns. Future applications should maximize the agent's conversational ability and the system's overall usability. Our results can inform future designs of conversational agents for older adults, which need to include older adults as system co-designers to maximize usability and acceptance.

Team functioning in hospice interprofessional meetings: An exploratory study of providers' perspectives.

Interprofessional collaboration is the foundation of hospice service delivery. In the United States, hospice agencies are required to regularly convene interprofessional meetings during which teams review plans of care for the patients and families they serve. A small body of research suggests that team functioning could be significantly enhanced in hospice interprofessional meetings; however, systematic investigation of this possibility has been limited to date. The purpose of this qualitative study was to better understand the experiences and perspectives of hospice providers who regularly participate in interprofessional meetings as a first step toward improving teamwork in this setting. We interviewed 24 hospice providers and conducted a template analysis of qualitative data to identify barriers and facilitators to effective team functioning in interprofessional meetings. Participants recognised the ways meetings supported high-quality, holistic patient and family care but voiced frustrations over meeting inefficiencies, particularly in light of caseloads they perceived as overly demanding. Time constraints were often viewed as prohibiting the inclusion of interprofessional content and full participation of all team members. Findings suggest that modifications to interprofessional meetings such as standardising processes may enhance meeting efficiency and team functioning.

An evaluation of wellness assessment visualizations for older adults.

BACKGROUND: Smart home technologies provide a valuable resource to unobtrusively monitor health and wellness within an older adult population. However, the breadth and density of data available along with aging associated decreases in working memory, prospective memory, spatial cognition, and processing speed can make it challenging to comprehend for older adults. We developed visualizations of smart home health data integrated into a framework of wellness. We evaluated the visualizations through focus groups with older adults and identified recommendations to guide the future development of visualizations. MATERIALS AND METHODS: We conducted four focus groups with older adult participants (n=31) at an independent retirement community. Participants were presented with three different visualizations from a wellness pilot study. A qualitative descriptive analysis was conducted to identify thematic content. RESULTS: We identified three themes related to processing and application of visualizations: (1) values of visualizations for wellness assessment, (2) cognitive processing approaches to visualizations, and (3) integration of health data for visualization. In addition, the focus groups highlighted key design considerations of visualizations important towards supporting decision-making and evaluation assessments within integrated health displays. CONCLUSIONS: Participants found inherent value in having visualizations available to proactively engage with their healthcare provider. Integrating the visualizations into a wellness framework helped reduce the complexity of raw smart home data. There has been limited work on health visualizations from a consumer perspective, in particular for an older adult population. Creating appropriately designed visualizations is valuable towards promoting consumer involvement within the shared decision-making process of care.

A systematic review of the use of technology for reminiscence therapy.

As the segment of the population 65 years of age or older continues to grow, the number of individuals with dementia increases proportionally, highlighting the need to design therapies that meet the social and emotional needs of people with dementia. Information and communication technologies (ICT) are potential venues for supporting the delivery of such therapies, including reminiscence therapy (RT), which is a non-pharmacological intervention involving the prompting of past memories, often with artifacts such as old photographs or music for therapeutic benefits such as the facilitation of social interactions or the increase of self-esteem. This paper systematically examines the scientific literature on the use of ICT for facilitating RT to assess the current state of the evidence and identify future trends. We searched the PubMed (1966-2013), ACM (1954-2013), and PsycINFO (1908-2013) repositories using the keywords dementia and reminiscence. Three hundred eighty-six articles were retrieved, 44 of which met the inclusion and exclusion criteria. Findings of the systematic review include that there are benefits to using ICT for RT interventions. Some of these benefits are access to rich and engaging multimedia reminiscence materials, opportunities for people with dementia to participate in social interactions and take ownership of conversations, and a reduction of barriers due to motor deficits during interactions with media. Future studies should explore the types and content of media beneficial to individuals at different stages of dementia.

Application of the VALUE communication principles in ACTIVE hospice team meetings.

BACKGROUND: The ACTIVE (Assessing Caregivers for Team Intervention through Video Encounters) intervention uses technology to enable family caregivers to participate in hospice interdisciplinary team (IDT) meetings from geographically remote locations. Previous research has suggested that effective communication is critical to the success of these meetings. The purpose of this study was to explore communication in ACTIVE IDT meetings involving family caregivers and to assess the degree to which hospice teams use specific communication principles (summarized in the mnemonic VALUE: value, acknowledge, listen, understand, and elicit), which have been supported in previous research in intensive care settings. METHODS: Researchers analyzed team-family communication during 84 video- and/or audio-recorded care plan discussions that took place during ACTIVE team meetings, using a template approach to text analysis to determine the extent and quality of VALUE principles. The total content analyzed was 9 hours, 28 minutes in length. RESULTS: Hospice clinicians routinely employed the VALUE communication principles in communication during ACTIVE IDT meetings with family caregivers, but the quality of this communication was frequently rated moderate or poor. The majority of such communication was task-focused. Less often, communication centered on emotional concerns and efforts to gain a more holistic understanding of patients and families. CONCLUSIONS: This analysis suggests an opportunity for improving support for family members during ACTIVE IDT meetings. Members of hospice IDTs should remain aware of the opportunity for additional attention to the emotional realities of the hospice experience for family caregivers and could improve support for family caregivers during IDT meetings by ensuring that messages used to exemplify VALUE principles during team-family communication are of a high quality.

Using informatics to capture older adults' wellness.

PURPOSE: The aim of this paper is to demonstrate how informatics applications can support the assessment and visualization of older adults' wellness. A theoretical framework is presented that informs the design of a technology enhanced screening platform for wellness. We highlight an ongoing pilot demonstration in an assisted living facility where a community room has been converted into a living laboratory for the use of diverse technologies (including a telehealth component to capture vital signs and customized questionnaires, a gait analysis component and cognitive assessment software) to assess the multiple aspects of wellness of older adults. METHODS: A demonstration project was introduced in an independent retirement community to validate our theoretical framework of informatics and wellness assessment for older adults. Subjects are being recruited to attend a community room and engage in the use of diverse technologies to assess cognitive performance, physiological and gait variables as well as psychometrics pertaining to social and spiritual components of wellness for a period of eight weeks. Data are integrated from various sources into one study database and different visualization approaches are pursued to efficiently display potential correlations between different parameters and capture overall trends of wellness. RESULTS: Preliminary findings indicate that older adults are willing to participate in technology-enhanced interventions and embrace different information technology applications given appropriate and customized training and hardware and software features that address potential functional limitations and inexperience with computers. CONCLUSION: Informatics can advance health care for older adults and support a holistic assessment of older adults' wellness. The described framework can support decision making, link formal and informal caregiving networks and identify early trends and patterns that if addressed could reduce adverse health events.

Family caregiver participation in hospice interdisciplinary team meetings: how does it affect the nature and content of communication?

Collaboration between family caregivers and health care providers is necessary to ensure patient-centered care, especially for hospice patients. During hospice care, interdisciplinary team members meet biweekly to collaborate and develop holistic care plans that address the physical, spiritual, psychological, and social needs of patients and families. The purpose of this study was to explore team communication when video-conferencing is used to facilitate the family caregiver's participation in a hospice team meeting. Video-recorded team meetings with and without family caregiver participation were analyzed for communication patterns using the Roter Interaction Analysis System. Standard meetings that did not include caregivers were shorter in duration and task-focused, with little participation from social workers and chaplains. Meetings that included caregivers revealed an emphasis on biomedical education and relationship-building between participants, little psychosocial counseling, and increased socioemotional talk from social workers and chaplains. Implications for family participation in hospice team meetings are highlighted.

Integrated data visualisation: an approach to capture older adults' wellness.

Informatics tools can help support the health and independence of older adults. In this paper, we present an approach towards integrating health-monitoring data and describe several techniques for the assessment and visualisation of integrated health and well-being of older adults. We present three different visualisation techniques to provide distinct alternatives towards display of the same information, focusing on reducing the cognitive load of data interpretation. We demonstrate the feasibility of integrating health-monitoring information into a comprehensive measure of wellness, while also highlighting the challenges of designing visual displays targeted at multiple user groups. These visual displays of wellness can be incorporated into personal health records and can be an effective support for informed decision-making.

A Holistic approach to assess older adults' wellness using e-health technologies.

OBJECTIVES: To date, methodologies are lacking that address a holistic assessment of wellness in older adults. Technology applications may provide a platform for such an assessment, but have not been validated. We set out to demonstrate whether e-health applications could support the assessment of older adults' wellness in community-dwelling older adults. MATERIALS AND METHODS: Twenty-seven residents of independent retirement community were followed over 8 weeks. Subjects engaged in the use of diverse technologies to assess cognitive performance, physiological and functional variables, as well as psychometric components of wellness. Data were integrated from various e-health sources into one study database. Correlations were assessed between different parameters, and hierarchical cluster analysis was used to explore the validity of the wellness model. RESULTS: We found strong associations across multiple parameters of wellness within the conceptual model, including cognitive, functional, and physical. However, spirituality did not correlate with any other parameter studied in contrast to prior studies of older adults. Participants expressed overall positive attitudes toward the e-health tools and the holistic approach to the assessment of wellness, without expressing any privacy concerns. CONCLUSIONS: Parameters were highly correlated across multiple domains of wellness. Important clusters were noted to be formed across cognitive and physiological domains, giving further evidence of need for an integrated approach to the assessment of wellness. This finding warrants further replication in larger and more diverse samples of older adults to standardize and deploy these technologies across population groups.

Exploring interpersonal communication in hospice interdisciplinary team meetings.

In health care teams, lack of collaboration or inability to collaborate undermines the goal of providing holistic and comprehensive geriatric care. This study examines relational communication control used by hospice interdisciplinary team members in their attempt to share information and contribute to decision making in team meetings. Eighty-one hospice team discussions were coded for message control types. Analysis of the data found that the nurse's role as primary reporter implicitly created a struggle for relational control among other team members within the meeting. This study concluded that a majority of interpersonal communication in the team meetings was aimed at gaining control of the information exchange. Future attention should be given to organizational policy aimed at shaping the structure of team meetings.

Assessing caregivers for team interventions (ACT): a new paradigm for comprehensive hospice quality care.

This article provides a framework labeled ACT that aims to successfully integrate family caregivers and patients into one unit of care, as dictated by the hospice philosophy. ACT (assessing caregivers for team interventions) is based on the ongoing assessment of the caregiver background context, primary, secondary, and intrapsychic stressors as well as outcomes of the caregiving experience and subsequently, the design and delivery of appropriate interventions to be delivered by the hospice interdisciplinary team. Interventions have to be tailored to a caregiver's individual needs; such a comprehensive needs assessment allows teams to customize interventions recognizing that most needs and challenges cannot be met by only one health care professional or only one discipline. The proposed model ensures a holistic approach to address the multifaceted challenges of the caregiving experience.

Home telecare technologies for the elderly.

There are many home telecare technologies which have been developed specifically for chronic diseases and there are some more generic technologies that could be used as well. For home telecare, the equipment must be certified, the operational routines must be reformed, the infrastructure must be in place, the market must be prepared, the health authorities must be convinced that the system will work and the cost-effectiveness must be evaluated. Organizational and societal changes, such as cost reduction policies and an aging population, are the main driving forces for the development of home telecare, especially for elderly patients. At the moment there is no holistic model for scientific evaluation from different perspectives (e.g. clinical, legal, technical). We suggest that more research on home telecare and its effects needs to be conducted, in order to provide evidence for optimizing the use of this promising technique.

Patient and family involvement in hospice interdisciplinary teams.

Hospice programs rely on interdisciplinary team (IDT) collaboration in the delivery of quality care at the end of life. The hospice philosophy advocates patient autonomy in decision making, and treatment of the patient and family as a unit of care. Including patients and families in IDT meetings regarding their care is a logical corollary of this philosophy. Hospice professionals in one Midwestern US state were interviewed by phone to determine the extent of patient and family involvement in their IDT meetings. A few programs had direct experience with patients and families attending IDT meetings, but attendance was not routine. Better communication was recognized as a potential benefit. The patient's frailty and the burdens of caregiving for the family were noted challenges to participation. Video-mediated communication is offered as a potential solution.