Children's understanding of dying and death: A multinational grounded theory study.

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.

Measuring spiritual uncertainty for hospice and palliative care providers.

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.

Home-Based Reiki by Informal Caregivers: A Mixed-Methods Pilot Study.

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.

The State of Spirituality Scale as a Screening Tool for Spiritual Distress.

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.

Strategies for recruiting the dependent children of patients with a life-limiting illness as research participants.

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.

Understanding the Experience of Osteoporosis Risk in Bariatric Surgical Patients.

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.

Understanding Hospice Patients' Beliefs About Their Life Expectancy: A Qualitative Interview Study.

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.

A scoping review of the phenomenon of osteoporosis in post bariatric surgical patients.

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.

Telling Adolescents That a Parent Has Died.

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.

Spiritual Uncertainty Among Hospice Providers: "There Were Tensions".

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.

Advancing the Science of Recruitment for Family Caregivers: Focus Group and Delphi Methods.

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.

Family caregiver recruitment via social media: challenges, opportunities and lessons.

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.

Support for using five attributes to describe spirituality among families with a parent in hospice.

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 same way. 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.

Two worlds: Adolescents' strategies for managing life with a parent in hospice.

OBJECTIVE: This study aimed to generate an explanatory model of the coping strategies that adolescents employ to manage the stressors they experience in the final months of their ill parent's life and shortly after their death. METHOD: The sample included 26 families of adolescents with a parent receiving care in a large hospice program in northeastern Ohio. A semistructured interview was conducted with 14 ill parents, 17 well parents/guardians, and 30 of their adolescent children before the parent's death and, additionally, with 6 of these families after the death. The interviews were audiotaped, transcribed verbatim, and analyzed using a grounded-theory approach. RESULTS: The participants described two worlds that constituted the lives of the adolescents: the well world of normal adolescence and the ill world of having a parent near the end of life. The adolescents experienced a common challenge of living in two worlds and responded to the challenge with a process we labeled "managing two worlds." Five stages through which adolescents manage their worlds were identified: keeping the ill world and the well world separate; having the ill world intrude into the well world; moving between the ill world and the well world; being immersed in the ill world; and returning to the well world having been changed by the ill world. SIGNIFICANCE OF RESULTS: The explanatory model of "managing two worlds" outlines a complex and nuanced process that changes over time. The model can be used by health professionals who seek to help adolescents navigate this critical time when their parents are dying or have recently died. These results can also be used to inform the development of interventions that assist families with strategies tailored to an adolescent's specific needs. Future research should investigate associations among the process of "managing two worlds" and outcomes related to adolescent bereavement.

Parental relationships beyond the grave: Adolescents' descriptions of continued bonds.

OBJECTIVE: Many people experience an ongoing relationship with a deceased loved one. This is called a "continued bond." However, little is known about the adolescent experience with continued bonds once a parent has died. This study describes three ways that adolescents continue their relationship with a parent after that parent's death. METHOD: Individual semistructured interviews were conducted with nine adolescent children of deceased hospice patients from a large hospice in northeastern Ohio as part of a larger grounded-theory study. The interviews were audiotaped, transcribed verbatim, and analyzed using a conventional content analysis approach. RESULTS: Adolescents continued their bonds with deceased parents in one of three ways: experiencing encounters with the deceased parent, listening to the inner guide of the parent, and keeping mementos to remind them of the parent. SIGNIFICANCE OF RESULTS: The ways that the adolescents continued their bond with a deceased parent assisted them in creating meaning out of their loss and adjusting to life without that parent. Our results can be used by health professionals and parents to help adolescents after a parent has died.

Uncertainties experienced by family members when one parent is dying.

PURPOSE: This research examined uncertainty as a salient theme for families in which a parent was dying while receiving hospice care. METHODS: Interviews were conducted with 61 participants from 26 families in the parent study to explore the strategies used by adolescents with a parent in a hospice. Second interviews were conducted with 15 original participants after the death of their parent. Conventional content analysis was used to analyse data. RESULTS: Uncertainty was a prevalent and salient theme in the participants' stories revealing patterns about the causes, barriers, effects and strategies used to manage uncertainty. CONCLUSION: Uncertainties associated with the end of life can be problematic for some people, requiring attention by health professionals.

Telling adolescents a parent is dying.

BACKGROUND: When a parent is terminally ill, one of the major challenges facing families is informing children of the parent's condition and prognosis. This study describes four ways in which parents disclose information about a parent's life-threatening illness to their adolescent children. METHODS: We audio-recorded and transcribed 61 individual interviews with hospice patients who were recruited from a large hospice in northeastern Ohio, their spouses/partners, and their adolescent children. The interviews were coded and analyzed using a constant comparison approach. RESULTS AND CONCLUSIONS: Families inform adolescents about the progression of a parent's terminal illness in characteristic ways that remain fairly consistent throughout the illness, and are aimed at easing the adolescents' burden and distress. The families engaged in the process of disclosure in one of four ways: measured telling, skirted telling, matter-of-fact telling, and inconsistent telling. These results will inform the development of interventions that assist families with disclosure and are tailored to each family's communication style.

Interaction patterns between parents with advanced cancer and their adolescent children.

OBJECTIVE: Advanced cancer profoundly affects those with the illness and their families. The interaction patterns between parents with advanced cancer and their adolescent children are likely to influence how a family experiences a parent's dying process. There is little information on such interactions. This study aimed to develop an explanatory model that explains interaction patterns between parents with advanced cancer and their adolescent children and to identify strategies to prepare children for their lives after a parent dies. METHODS: Semi-structured interviews were conducted with 9 parents with advanced cancer, 7 of their spouses/partners, and 10 of their adolescent children. The interviews were recorded, transcribed verbatim, and analyzed using a constructionist grounded theory approach. RESULTS: Twenty-six family participants were interviewed. Their main concern was not having enough time together. In response, they described a four-stage process for optimizing the time they had left together: coming to know our time together is limited, spending more time together, extending our time together, and giving up our time together to end the suffering. The adolescents and their ill parents did not change their interaction patterns until they realized their time together was limited by the advanced cancer. Then they spent more time together to make things easier for each other. CONCLUSIONS: Time was of great importance to the parents and adolescents; all the participants structured their stories in relation to the concept of time. The model reflects the dynamic process by which families continuously adapt their relationships in the face of advanced cancer.

Recruiting for end of life research: lessons learned in family research.

A main hurdle for end of life research is recruitment of patients. Researchers can enroll interested patients and their families for end of life studies by gaining the trust of the hospice staff, who can make valuable referrals of patients nearing the end of life. Participants in the study should be made as comfortable as possible and not be coerced into the interview process. Once the patients have confidence in the researchers, they are more than willing to be a part of the research process because it can prove to be cathartic to many of the patients and their family members.

Aggressive events in adolescent dating violence.

This purpose of this paper is to present a typology of common aggressive events that occur in the context of adolescent dating violence. The typology is based on 42 transcripts of interviews with young adults, ages 18 to 21, who described dating violence they had experienced when adolescents (ages 13-18). One-hundred and eighty-four text units that contained a description of an event involving aggression or violence between the participant and a dating partner were extracted from the transcripts. Cross-case analysis was used to create categories of events that shared similar characteristics. The analysis yielded eight types of aggressive events: (a) tumultuous, (b) explosive, (c) scuffling, (d) violating, (e) threatening, (f) controlling, (g) disparaging, and (h) rejecting, ignoring, or disrespecting. The typology can provide a foundation for further research on adolescent dating violence from a situational perspective and can be used as a tool to promote discussion of dating violence with victimized or at-risk youth.