Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer.

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.

Being Unprepared: A Grounded Theory of the Transition of Asthma Self-Care in College Students.

PURPOSE: The purpose of this study was to conceptualize the basic social process of how college students transition from home-based asthma management to independent self-care management. DESIGN AND METHODS: Classical grounded theory was used to explore the transition of asthma self-care in college students. Seventeen college students with asthma from a Midwestern urban university were interviewed. RESULTS: Being Unprepared emerged as the basic social process used by students transitioning from home-based management of their asthma to managing their asthma in college. Being Unprepared conceptualizes a process by which participants engaged in relying on others, primarily their mother, to manage their asthma while in high school. This reliance on others continued when participants became college students with asthma where they were found lacking preparation for self-management in college exemplified by their being relatively unprepared for dealing with the unexpected stressors associated with starting college or for managing asthma episodes safely and effectively as students. Participants acknowledged that they were unprepared for managing their asthma independently and the need for becoming better prepared for their own safe asthma self-management. CONCLUSIONS: Youth with asthma may be at risk for poor health outcomes as they transition to self-care in college. The grounded theory, Being Unprepared, derived from empirical data can provide a scientific basis for deriving practice protocols. PRACTICE IMPLICATIONS: These findings can be used to inform parents and healthcare providers about the need for early intervention designed to prepare students with asthma for the transition to college while in high school. The theory concepts can be operationalized as instrument items for future research studies.

Development and testing of the Hogan Inventory of Bereavement short form for children and adolescents.

To reduce response burden for bereaved children and adolescents, we provide data on the development and psychometric testing of a short form of the Hogan Sibling Inventory of Bereavement (HSIB). The resulting measure of grief symptoms and personal growth was renamed the Hogan Inventory of Bereavement - Short Form (Children and Adolescents; HIB-SF-CA). Psychometric properties were evaluated in a sample of 86 bereaved siblings. Instrument development and validation research design methods were used. Evidence of strong reliability and convergent validity indicates that the 21-item HIB-SF-CA is comparable to the original 46-item HSIB in measuring grief and personal growth in this population.

Intuitive and Instrumental Grief: A Study of the Reliability and Validity of the Grief Pattern Inventory.

A convenience sample of 209 participants completed the Grief Pattern Inventory (GPI) together with the Hogan Grief Reaction Checklist (HGRC), the Integration of Stressful Life Events Scale (ISLES), and the Myers-Briggs Type Indicator (MBTI). Alpha coefficients of the GPI's intuitive and instrumental subscales were improved by eliminating low-performing items and empirically reassigning items from the GPI dissonant subscale. The two modified scales showed a near zero intercorrelation indicating they were independent constructs in this sample, a conclusion further verified by factor analysis. Both styles correlated with distress measures from the HGRC and correlated negatively with adaptation indicators from the ISLES, though the findings were stronger for intuitive grievers. MBTI findings revealed that intuitive grievers endorsed significantly more "feeling" in how processing occurs while grievers who preferred sensing/thinking functions more often identified with the instrumental grief pattern. Implications of these findings for scholars and clinicians are discussed.

The Man I Once Knew: Grief and Inflammation in Female Partners of Veterans With Traumatic Brain Injury.

Grief, although traditionally conceptualized as a bereavement-related reaction, is also experienced by significant others in response to the profound cognitive and personality changes associated with a traumatic brain injury (TBI) in a loved one. Grief associated with the death of a loved one is related to increases in proinflammatory cytokines, yet it is not clear whether this is the case for grief experienced by individuals caring for a significant other with TBI. The purpose of this cross-sectional, exploratory study was to examine grief and its association with a proinflammatory cytokine, tumor necrosis factor α (TNF-α), in wives/partners caring for veterans with TBI. Participants completed written measures of grief, perceived stress, and depressive symptoms and provided morning saliva samples for TNF-α analysis. Participants reported levels of grief comparable to those reported in studies evaluating individuals grieving the death of a loved one. Path analysis revealed that grief was not associated with TNF-α; however, participants reporting high levels of blame/anger, a subscale of the grief scale, had higher levels of TNF-α. In addition, both grief and blame/anger were related to increased perceived stress and depressive symptoms; however, path analysis demonstrated that perceived stress and depressive symptoms did not mediate the influence of blame/anger on TNF-α. These findings suggest that blame/anger associated with grief may be related to the elevations in TNF-α exhibited by individuals caring for a loved one with TBI.

He Looks Normal But Challenges of Family Caregivers of Veterans Diagnosed with a Traumatic Brain Injury.

PURPOSE: To describe the experience of family caregivers providing care to veterans with traumatic brain injury (TBI). DESIGN/METHODS: Using a qualitative design, interviews were conducted with a purposeful sample of women caregivers. Data were analyzed using content analysis procedures. FINDINGS: Findings resulted in the key concept phrased by participants as "He looks normal but." This phrase conceptualizes the participants' description of their experience caring for a brain injured veteran who could appear normal to others but the caregiver's description revealed substantial cognitive, social, and emotional deficits. Concepts include (a) Becoming aware of his disabilities, (b) Observing his troubling symptoms, (c) Dealing with his memory loss, (d) Being fearful of his anger, (e) Sensing his loneliness, (f) Acknowledging the effects on the children, and (g) Managing the best I can. CONCLUSIONS/CLINICAL RELEVANCE: A better understanding of the needs of caregivers of veterans with TBI may allow clinicians to better support caregivers.

Factors affecting recruitment and participation of bereaved parents and siblings in grief research.

This study examined participation factors in a study of families (N = 84) within 1 year of a child's cancer-related death. Specific aims were to examine associations between: (a) recruitment variables (number of phone calls made to eligible families, number of calls answered by eligible families) and participation rates (study agreement and refusal) and (b) characteristics of deceased children (gender, age, length of illness, time since death) and participation rates. Characteristics of deceased children did not differ between participating and non-participating families. Researchers made significantly fewer calls to participating versus refusing families. Participating families most often agreed during the first successful call connection, and more calls did not mean more recruitment success. Thus, it is reasonable to limit the number of calls made to bereaved families. Despite recruitment challenges, many bereaved parents and siblings are willing and interested to participate in grief research.

Who are you going to call? Primary care patients' disclosure decisions regarding direct-to-consumer genetic testing.

BACKGROUND: Direct-to-consumer genetic testing (DTCGT) offers risk estimates for a variety of complex diseases and conditions, yet little is known about its impact on actual users, including their decisions about sharing the information gleaned from testing. Ethical considerations include the impact of unsolicited genetic information with variable validity and clinical utility on relatives, and the possible burden to the health care system if revealed to physicians. AIMS: The qualitative study explored primary care patients' views, attitudes, and decision making considerations regarding DTCGT. This article focuses on the disclosure decisions participants made regarding participation, testing, and results of DTCGT, a topic which arose as a secondary aim of the study. METHODS: Through four longitudinal interviews (pre-test, results, 3 and 12 months post-test) we examined twenty primary care patients' decisions, expressed intentions, and actions regarding disclosure to immediate and extended family, friends and coworkers, and physicians about participation in and results of DTCGT. Individual interviews were analyzed using qualitative content analysis and a summative approach to describe the global themes. RESULTS: Most participants disclosed to some immediate family; less than half disclosed to extended family; approximately half talked to friends. Most participants stated they would or might disclose to physicians about DTCGT and a few did. Conceptual themes that emerged from the data analysis include ambivalence about disclosure, consistency between intention and actual disclosure behavior and decisions, and conditional information sharing. CONCLUSIONS: Participants' intentional and actual disclosure patterns offer insight into how they view DTCGT, weigh results, and the potential impact of DTCGT.

Primary care patients' views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study.

Little is known about the decisions and perspectives of participants undergoing direct-to-consumer genetic testing (DTCGT). The aims of this study were to examine the views, attitudes and decision-making factors of primary care patients regarding DTCGT. Their experience of and reactions to testing also emerged during the study. In this longitudinal, qualitative study, 20 primary care patients participated in DTCGT and individual interviews: (1) prior to testing after the informed consent session, (2) after receiving results, (3) 3 months post-test, and (4) 12 months post-test. Interviews included open-ended questions and all transcripts were analyzed using grounded theory, constant comparison methods. Five key themes emerged from data analysis as participants underwent DTCGT and reflected on their decision over time: (1) limited concerns about DTCGT, (2) motivations for testing, (3) expectations of testing, (4) understanding of results, and (5) impact of testing and results. While a few participants expressed concerns before testing, participants were motivated to test by curiosity, gaining actionable knowledge, and altruism. Most were uncertain of what to expect from DTCGT and needed assistance in understanding results. While many reported testing had no significant impact on them, being relieved or pleased after testing was the most common emotional effect. Notably, a few participants made positive health changes in response to testing. Given the paucity of information about primary care patients and DTCGT, this study adds more in-depth information to the emerging research on how such participants' view, make decisions about, experience and react to DTCGT over time. Because uncertainty remains about the accuracy of DTCGT, the response of primary care patients to this testing requires further investigation.

Making meaning in the legacy of tissue donation for donor families.

CONTEXT-Individuals needing lifesaving (heart valves, skin grafts for repair of critical burn injuries) and life-enhancing (corneas, bone and tendon grafts, skin, and veins) tissue donations outnumber the tissues available for transplant. OBJECTIVE-To describe the grief family members experienced 6 months after donation and to learn how family decision makers gained meaning from the decision to donate a loved one's tissues. This is phase 1 of a longitudinal study in which family decision makers will be surveyed again at 13 and 25 months after donation. DESIGN-Qualitative descriptive.Participants-One hundred seven family decision makers whose family member died a traumatic sudden death and who authorized donating tissues for transplant. DATA COLLECTION AND ANALYSIS-Data were written responses to the questions, "If you could ask or tell your dead family member something, what would it be?" and "What meaning does donating tissue to others have for you?" Data were analyzed by using content analysis procedures. RESULTS-Concepts derived from the first question represent the context of family members grieving the sudden death of a loved one. Concepts were (1) feeling empty, (2) missing and loving, (3) being grateful, and (4) having regrets. The concepts derived from the second question were (1) fulfilling their family member's wish, (2) doing the right thing, (3) believing something good came from the death, (4) helping others, and (5) living on. Reasons for donating were based, in part, on honoring the legacy of their loved ones who had given of themselves to others in life and now continued to give to others after death. CONCLUSION-The results of this study provide a basis for health professionals and donation staffs to better understand the context within which families grieve and give meaning to tissue donation.

Female caregivers of stroke survivors: coping and adapting to a life that once was.

Despite the prevalence of women caring for stroke survivors, relatively little research has focused specifically on the experience and needs of informal female caregivers of stroke survivors. Therefore, the purpose of this study was to describe the experience of female caregivers who care for an adult family member who has experienced a stroke within the previous year using a qualitative methodology. A sample of 46 female caregivers of stroke survivors completed a demographic form and responded to open-ended written questions exploring their experiences as caregivers and how they coped with changes in their lives during the first year after the stroke. Four concepts emerged from the data: losing the life that once was, coping with daily burdens, creating a new normal, and interacting with healthcare providers. Findings suggest that female caregivers of stroke survivors grieve the life that they once shared with the stroke survivor and struggle to cope with multiple family and work demands while trying their best to interact with healthcare providers to attain the best possible care for their loved ones. Recognizing the unique challenges of female caregivers of stroke survivors may help nurses provide better support and resources to meet their needs.

Peer relationships of bereaved siblings and comparison classmates after a child's death from cancer.

OBJECTIVES: To compare peer relationships among bereaved siblings and matched classmates, and to examine gender, grade level, and time since death as moderators. METHODS: Families were recruited from cancer registries at four hospitals 3-12 months after a child's death. Measures of social behavior and peer acceptance were completed by children in the classrooms of 105 bereaved siblings (ages 8-17 years). Teachers also reported on children's social behavior. Three classmates were matched for gender, race, and age to each bereaved sibling to form a comparison group (n = 311). RESULTS: Teachers reported bereaved siblings were more prosocial than comparison classmates. Peers perceived bereaved boys as more sensitive-isolated and victimized, while bereaved siblings in elementary grades were perceived by peers as less prosocial, more sensitive-isolated, less accepted, and as having fewer friends. Peers and teachers viewed bereaved siblings in middle/high school grades as higher on leadership-popularity. CONCLUSIONS: Bereaved siblings who were male and in elementary grades were more vulnerable to social difficulties, while those in middle/high school may exhibit some strengths. Ongoing research to inform the development of interventions for bereaved siblings is warranted.

Who needs grief counseling? A report from the Scott & White Grief Study.

Cluster analysis was performed on a diverse group of 69 non-clinical grievers whose loved ones died between 12-40 months prior to the study. Based on psychometric measures of both bereavement distress and growth, three distinct clusters emerged: High Grief (high distress-low growth; n = 16); High Growth (low distress-high growth; n = 32); and Low Impact (low distress-low growth; n = 21). Discriminant function analyses showed that the High Grief cluster differed robustly from the other two groups on several measures of grief adaptation and coping; the differences between the High Growth and Low Impact clusters were less pronounced. High Grief participants sought grief counseling significantly more often whereas the Low Impact grievers preferred medicinal help for symptoms if they sought any professional assistance at all. When High Growth participants sought counseling, they seemed to focus on growth-oriented dimensions rather than mere symptom relief. Of the 11 participants who sought grief counseling for their loss, 10 (91%) found the experience to be helpful. Findings are discussed in the context of meta-analytic studies of the effectiveness of grief counseling.

Oncology nursing education: nursing students' commitment of "presence" with the dying patient and the family.

During an elective oncology nursing course, students expressed uncertainties about activities that would offer patient and family support during end-of-life care. Following a chaplain's lecture, students in a class reaction paper identified appropriate nurse responses and actions that would offer supportive care to the dying patient and the family. Six processes were extracted from student comments. A core category was identified as the importance of "nurse presence" at the bedside of the dying patient.

Feeling the absence: a content analysis from the Scott and White grief study.

In an effort to understand how the bereaved "make sense" of deaths they have experienced, 85 mourners were asked to write a free essay in response to the question, "What does the death of your loved one mean to you?" In a content analysis of the resulting narratives, 9 unique meaning constructs emerged, the most prominent of which spoke to the theme of feeling the absence of the decedent. A distinction was drawn between meaning categories referent to pain and suffering versus recovery and hope and between consequent/instrumental forms of meaning versus philosophical/existential meanings. Implications for additional study of the relationship between meaning constructs and bereavement adaptation were discussed.

Testing the grief to personal growth model using structural equation modeling.

The belief that loss can result in growth has been hypothesized for centuries.Yet, traditional grief theories have viewed grief work as a process of resolving grief and returning to normal. Formal conceptualizations of grief to growth models have been recently delineated by several grief theorists. The Grief to Personal Growth model represents one emergent perspective of the qualitative changes resulting from the loss of a loved one. The model delineates a pathway through grief that indicates the bereft experience despair and detachment followed by intrusive thoughts and later avoidance of intense preoccupation with grief. Social support is shown to facilitate the bereft as they reconstruct their lives and find new meaning in life. A second path indicates that some bereaved individuals become mired in grief and need help to proceed toward personal growth. The model was tested in a sample of bereaved parents using structural equation modeling as a method of theory testing. The results of testing this model are presented within a framework of theory testing as a mechanism to bridge the gaps between theory, practice, and research. Implications for practice are considered.