BACKGROUND:Having family members provide care to their loved ones in the intensive care unit (ICU) is a beneficial yet seldom implemented approach. For family members to perform caregiving, nurses must be willing to teach, and such willingness is a developing area of research. OBJECTIVES:To adapt an instrument validated in family members, the Family Willingness for Caregiving Scale, to address nurses' willingness to teach family members caregiving skills. METHODS:Purposive and snowball sampling were used to recruit 10 expert ICU nurses through the American Association of Critical-Care Nurses' research website and social media platforms. The researchers conducted cognitive interviews with the nurses to address the instrument's content validity. RESULTS:The scale was refined based on the participants' feedback. Items were deleted, added, and revised. Furthermore, scale instructions were adjusted to emphasize the willingness to teach families of patients receiving mechanical ventilation. Qualitative themes emerged related to barriers to family engagement, including time constraints, patient acuity, and nurse and family characteristics. CONCLUSIONS:Content validity of the scale was assessed, with future research aimed at pilot testing and evaluating construct validity before using the scale as a research instrument. Practical implications include using the scale as an evaluation tool to determine nurses' willingness to teach family members about caregiving. After evaluation, various strategies could be incorporated to enhance family engagement in adult ICUs.

This article reports on the item construction of a new screening scale to measure coping and communication among adolescents with a parent enrolled in hospice. The aim of this study was to use cognitive interviewing methodology to determine the validity and reliability of the Adolescent Coping and Communication Scale (ACCS). The young adults in this study identified the need for a consistent point person on the hospice care team to discuss their concerns and provide information and support. The ACCS is a concise 15-question tool using a 5-point Likert scale to monitor the adolescent's coping and communication needs in real time. It can easily be formatted electronically or in paper format and completed in less than 10 minutes. It can be used as a clinical screening tool by health professionals who seek to help adolescents navigate this critical time when their parent is near the end of life. These results can also be used to inform the development of interventions that assist families with strategies tailored to an adolescent's specific needs. Additional research is needed to assess the psychometric properties of scale items. Future research should investigate the use of this tool in other age groups and populations.

OBJECTIVES The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death. METHODS This qualitative study obtained interview data from N = 44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology. RESULTS Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country. SIGNIFICANCE OF RESULTS This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.

This pilot study explored whether Reiki delivered by family caregivers to cancer patients in a home setting was feasible in reducing cancer symptoms and enhancing health-related outcomes. An explanatory sequential mixed-methods study design was applied using pre-/post-Reiki questionnaires and post-Reiki interviews. Six patient-caregiver dyads from an outpatient clinic and cancer support facilities in northeast America performed daily Reiki at home for 3 weeks. Differences with symptoms, mental well-being, health-related quality of life, and satisfaction with at-home Reiki as well as qualitative content analyses were evaluated. Positive feedback was reported after at-home Reiki practice. Large statistical effects were identified for improving fatigue, memory, mood, nausea, and emotional well-being ( P < .10, r = 0.51-0.59). All participants were satisfied and 83.3% of them would recommend self-practice home Reiki. High involvement and adherence to the intervention protocol illustrated intervention fidelity. The qualitative data revealed 2 major categories, perceived benefits and barriers. Overall Reiki benefits outweighed barriers in relation to time commitment and place distractions/positioning. Our preliminary findings support that the at-home Reiki protocol had potential benefits and was feasible and acceptable by both community-dwelling patients and their family caregivers in promoting cancer-related outcomes. Further studies with larger samples are warranted to examine the effectiveness of home-based Reiki for a patient-centered cancer care modality.

Background: Spiritual uncertainty is a new construct for end-of-life care that focuses on the questions, worries and doubts people have with end-of-life spirituality. Spiritual uncertainty can contribute to spiritual distress for patients and families dealing with the end of life, as well as lead healthcare providers to avoid spiritual care methods. Aims: This article reports on the item construction of a new survey design to measure the spiritual uncertainty of healthcare providers. Methods: Items were constructed from qualitative data gathered from five focus groups (with a total of 23 interdisciplinary hospice and palliative care providers being surveyed). Data were developed through three rounds of item construction, selection/refinement and assessment. Findings: A final pool of 42 items was constructed to measure the spiritual uncertainty of healthcare providers. Expert validity was obtained by 16 interdisciplinary hospice and palliative care providers. Conclusion: This survey is the first to measure spiritual uncertainty of healthcare providers. Additional research is needed to assess the psychometric properties of survey items.

BACKGROUND:The voices of children and adolescents have historically been substituted by the perspective of adults. There is growing recognition that children (<18 years old) are able to participate in research and appreciate the opportunity to participate in studies. AIM:To share the strategies employed by two research teams from USA and UK, who have successfully recruited children living with parental life-limiting illness as research participants. FINDINGS:The researchers overcame common challenges when negotiating ethics committees by anticipating the IRB/REC concerns, providing the committees with detailed applications including distress protocols, and offering resources to their ethics committee to learn about conducting research with this population. The researchers navigated recruitment and gatekeeping by clinicians and parents by partnering with clinical agencies and nurturing relationships with practitioners who are supportive of the research, offering to present the findings of the study with continuing education credits, and developing children's, adolescents' and parents' project advisory groups to support recruitment, data collection and analysis. CONCLUSIONS:Simple strategies can be used to overcome barriers to recruitment, providing opportunities for children to be research participants and for their unique perspectives to be heard in palliative care research.

Patients and families facing serious and life- threatening illnesses are at risk for spiritual distress. Screening for spiritual distress is an efficient way of identifying issues. The State of Spirituality scale takes a uniq.

BACKGROUND:Patients with advanced disease often overestimate their life expectancy, which potentially impacts decision making.OBJECTIVE:To examine the nature and source of hospice patients' life expectancy estimates, about which little is known.DESIGN:Using semi-structured interviews, patients were asked to estimate their life expectancy and elaborate on their response.SETTING/SUBJECTS:Participants were hospice patients (n = 20, 55% male; 60% cancer).MEASUREMENT:We conducted thematic analysis using open and focused coding.RESULTS:Many participants had difficulty answering the life expectancy question and expressed uncertainty about when they would die. One-third overestimated their length of life relative to actual survival. The most common source of patients' prognostic beliefs was knowledge about their body, including physical symptoms and change over time. Half of patients reported that a provider had given them a prognostic estimate, and one-third agreed with, or gave estimates consistent with, the provider's estimate. Some patients said providers do not know prognosis or that time of death was unknowable.CONCLUSIONS:Key findings were that 1) many hospice patients had difficulty estimating life expectancy, and 2) hospice patients' life expectancy estimates were frequently based on their body and not on information from medical providers. These findings have implications for measuring prognostic awareness, as valid assessment is a necessary component of determining whether prognostic awareness is beneficial for patients. Future research should examine how life expectancy estimates are associated with well-being and whether results extend to larger samples of patients with advanced disease not in hospice.

Despite what is known about risk factors, preventive treatment, and increased prevalence of fragility fractures in post-bariatric surgical patients, little is known about how patient perspectives of osteoporosis risk inform their commitment to bone health. The purpose of this study was to examine the lived experience of osteoporosis risk in people who have had bariatric surgery. Interpretive phenomenology was used to explore osteoporosis from the perspectives of patients who have had bariatric surgery. Eligibility criteria included female, age older than 18 years, and able to understand and speak English. This research provided an understanding of the risk of osteoporosis from the constructed realities and experiences of those who have had bariatric surgery. Participants in this study incorrectly felt they had little to no risk for osteoporosis after bariatric surgery. Patients need to be aware of an increased risk for osteoporosis leading to the potential for fragility fractures after bariatric surgery; nurses are well positioned to enhance osteoporosis prevention efforts in this population through pre- and postoperative education.

This pilot study explored whether Reiki delivered by family caregivers to cancer patients in a home setting was feasible in reducing cancer symptoms and enhancing health-related outcomes. An explanatory sequential mixed-methods study design was applied using pre-/post-Reiki questionnaires and post-Reiki interviews. Six patient-caregiver dyads from an outpatient clinic and cancer support facilities in northeast America performed daily Reiki at home for 3 weeks. Differences with symptoms, mental well-being, health-related quality of life, and satisfaction with at-home Reiki as well as qualitative content analyses were evaluated. Positive feedback was reported after at-home Reiki practice. Large statistical effects were identified for improving fatigue, memory, mood, nausea, and emotional well-being (P < .10, r = 0.51-0.59). All participants were satisfied and 83.3% of them would recommend self-practice home Reiki. High involvement and adherence to the intervention protocol illustrated intervention fidelity. The qualitative data revealed 2 major categories, perceived benefits and barriers. Overall Reiki benefits outweighed barriers in relation to time commitment and place distractions/positioning. Our preliminary findings support that the at-home Reiki protocol had potential benefits and was feasible and acceptable by both community-dwelling patients and their family caregivers in promoting cancer-related outcomes. Further studies with larger samples are warranted to examine the effectiveness of home-based Reiki for a patient-centered cancer care modality.

Background: Risk factors, preventive treatment, and increased prevalence of fragility fractures in post-bariatric surgical patients have been researched, however, little is known about how patients' perspectives of osteoporosis risk determine their commitment to bone health. Purpose: The purpose of this review was to provide an overview and appraisal of the research regarding osteoporosis in post bariatric surgical patients, as well as to identify gaps in the literature in this area. Methods: Data bases searched included OVID Medline, CINAHL, and EMBASE which included ahead of print articles that had not yet been indexed. Relevant key words were used independently and in combination: "osteoporosis," "morbid obesity," and "bariatric surgery." Results: A total of 24 quantitative studies and 15 qualitative studies were retrieved for this review; none of the qualitative studies examined both osteoporosis and bariatric surgery. Conclusion: The current trend in bariatric surgical patients regarding osteoporosis is to examine the degree of bone loss based on significant influences including extent of weight loss, years since surgery, type of procedure performed, and subject selection. Patient perceptions about osteoporosis risk after bariatric surgery were rarely addressed.

How providers of end-of-life care perceive spirituality both within themselves and for others can directly impact their ability to provide spiritual care to patients and families. Uncertainty about spirituality can contribute to the awkwardness of spiritual care. Spiritual uncertainty includes the questions, worries, and doubts people have about the meaning, beliefs, connections, self-transcendence, and value that comprise spirituality. This article reports qualitative findings from a mixed-methods study that sought to understand spiritual uncertainty among hospice providers. Data were collected from 28 hospice team members (nurses, physicians, social workers, and expressive therapist) using focus groups, reflective journals, and one-on-one interviews. An overarching theme emerged that described the tensions perceived by providers caring for hospice patients. Those tensions were further categorized as being interpersonal, intrapersonal, and transpersonal in nature. The identification of tension as a source of strain for providers delivering spiritual care is necessary to the development of future interventions that can assist providers and patients navigating end-of-life spirituality.

Background Successful recruitment of participants is imperative to a rigorous study, and recruitment challenges are not new to researchers. Many researchers have used social media successfully to recruit study participants. However, challenges remain for effective online social media recruitment for some populations. Objective Using a multistep approach that included a focus group and Delphi method, researchers performed this study to gain expert advice regarding material development for social media recruitment and to test the recruitment material with the target population. Methods In the first phase, we conducted a focus group with 5 social media experts to identify critical elements for effective social media recruitment material. Utilizing the Delphi method with 5 family caregivers, we conducted the second phase to reach consensus regarding effective recruitment videos. Results Phase I utilized a focus group that resulted in identification of three barriers related to social media recruitment, including lack of staff and resources, issues with restrictive algorithms, and not standing out in the crowd. Phase II used the Delphi method. At the completion of Delphi Round 1, 5 Delphi participants received a summary of the analysis for feedback and agreement with our summary. Using data and recommendations from Round 1, researchers created two new recruitment videos with additions to improve trustworthiness and transparency, such as the university’s logo. In Round 2 of the Delphi method, consensus regarding the quality and trustworthiness of the recruitment videos reached 100%. Conclusions One of the primary challenges for family caregiver research is recruitment. Despite the broad adoption of social media marketing approaches, the effectiveness of online recruitment strategies needs further investigation.

Adolescence is a period of intense, accelerated physical and psychological change. It is an especially difficult time for young people confronting the life-limiting illness and death of a parent. Loss of a parent is devastating to an adolescent and may result in both emotional distress and long-term functional impairment. By providing multiple avenues to encourage the expression and release of painful feelings, family members and clinicians can help adolescents cope more effectively with their grief and promote eventual acceptance and healing. To comfort and support grieving adolescents with a parent in hospice, an understanding of adolescent development, effective communication strategies, and spiritual awareness is helpful for family members and clinicians.

The aim of this study was to explicate ways in which parents tell their adolescents about a parent's death. This study used a descriptive, qualitative design. From a large hospice in northeastern Ohio, nine adolescent children and six surviving spouses of recently deceased hospice patients were recruited. Participants completed a demographic questionnaire and a semistructured individual interview. Thematic content analysis techniques were used to analyze the data. Surviving parents tell adolescents about the parent's death in ways that are intended to inform and ease the adolescents' distress. They engage in the process of disclosure in one of three ways: measured telling, matter-of-fact telling, and inconsistent telling. Findings from the current study are consistent with the ways parents told their children about an ill parent's life-threatening illness and imminent death. The findings support a framework that describes the processes of disclosure of a parent's illness, imminent death, and death to their adolescent children. Predeath findings about telling foreshadowed the postdeath findings. These results can be used to inform the development of interventions in which nurses and other health care professionals assist families with disclosure before and after death by tailoring strategies according to the family's communication style.

Background: Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media. Purpose: The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers. Methods: Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community. Results: Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.

Objective: The importance of spirituality in the dying process is well documented. However, what spirituality means in these situations is hard to discern because few people (patients, families, researchers, or caregivers) will view spirituality in the sameway. The present research supports the use of a spiritual framework consisting of five common attributes (meaning, beliefs, connections, self-transcendence, and value) as a mechanism for viewing spirituality for people nearing the end of life. Using qualitative interviews from two related studies, our study aims to describe the prevalence of spirituality and its nature according to these five spiritual attributes.Methods: Data from two previous studies were analyzed. The first employed the methods of grounded theory to understand the strategies adolescents used to manage the impending death of a parent. Some 61 participants from 26 families were interviewed, including ill parents/patients, well parents/caregivers, and adolescents. The second study consisted of 15 interviews with the surviving parent and adolescents from 6 of these families after the death of the parent.Results: The original research from which these data were drawn did not seek to describe spirituality. However, spiritual themes were prevalent in the stories of many participants and included each of the five spiritual attributes.Significance of Results: Our findings demonstrate the prevalence of spirituality in the everyday lives of these families and supports the use of the spiritual framework according to the five common attributes to describe spirituality.

People with protracted and life-limiting illness engage in end-of-life transitions as they prepare for death. The end of life is a time of mystery that elicits uncertainties in the form of questions, worries, and doubts. If not managed properly, uncertainties can contribute to emotional distress and feelings of lost control. Currently, uncertainty occurring at the end of life is underresearched. Phenomenology was used to explore the experience of uncertainty for 6 hospice patients using semistructured interviews. A 4-member, interpretive team analyzed the data. The participants were asked to describe the uncertainties that they had while they were dying. Interestingly, most of the stories about uncertainty were spiritual in nature. An overall theme of “uncertainty as a bridge” emerged from the data as the way uncertainties affected their dying. Two subthemes of “uncertainties about dying” and “uncertainties about important relationships” also emerge as the areas of greatest concern for participants. These findings support uncertainty as an important phenomenon for people preparing for death and one that providers of end-of-life care should understand.