The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children].

The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings.

The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items.

The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.

No prior studies on hospice utilization have captured information about the amount of time between when one first learns of hospice as a potential option for care and when he/she actually enrolls. Little is in fact known about this decision-making process. The present study examines hospice enrollment by exploring relationships between hospice decision time and known barriers to care.

This was an exploratory cross-sectional study. Pearson's r was employed to identify bivariate relationships between barriers to care and decision time for hospice care. Independent-sample t tests and ANOVA were utilized to consider differences in decision time across key variables.

Some 90 hospice patients, or their primary decision maker, participated in the study from a not-for-profit hospice located in the southern United States. Decision time was correlated with referral source, use of disease-directed treatment, functional status (on the Palliative Performance Scale [PPS]), age, diagnosis, income, race, and spirituality—suggesting that decision time is a pertinent variable when examining hospice utilization. Differences in decision time were found across diagnosis, race, income, and referral source.

This study provides implications for policy and practice, particularly for clinicians faced with initial conversations about hospice care. Differences in decision time highlight ongoing needs related to overcoming healthcare disparities, the important role of including families in initial conversations, and the potential need for varied approaches to talking about hospice care based upon diagnosis. Results also highlight the need for policies supportive of concurrent care, where hospice can be accessed alongside curative care.

Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument.

In a prospective cohort study, the 48-item instrument was administered via a website or paper to 58 siblings.

Our study revealed that the measure has an estimated internal consistency of 0.96 and a temporal stability intraclass correlation coefficient (ICC) of 0.86 (p < 0.01). Its convergence validity is also satisfactory.

Our findings suggest that the IBesFEMS is highly relevant for pediatric palliative care clinicians and researchers. Future studies should investigate its factorial structure and predictive validities.

Beginning in 2007, all newly diagnosed cancer patients at the Koo Foundation Sun Yat-Sen Cancer Center (KF–SYSCC) were screened for psychosocial distress. Our social workers, as part of the psychosocial care team (PCT), have engaged in proactive outreach with patients identified as distressed. The goal of the present study was to assess the prevalence of psychosocial distress and the extent of contact between the PCT and distressed patients.

Newly diagnosed patients who were treated at KF–SYSCC between 2007 and 2010 for cancer were eligible if there were at least 100 patients with the same type of cancer. Before treatment began, they were screened with the Pain Scale and the Distress Thermometer (DT) and had the option to specify a desire for help. The rates of distress were analyzed by cancer type and by probable related factors. Information regarding contact with the PCT was retrieved from computerized databases.

Overall, some 5,335 cancer patients representing 12 major cancer types were included in our study. Of these, 1,771 (33.20%) were significantly distressed. By multivariate logistic regression, younger age, female gender, higher pain score, and disease stage, but not cancer type, were found to be associated with higher rates of distress. Among these distressed patients, 628 (36%) had some contact with the PCT.

This Taiwanese study with a large sample size revealed a prevalence rate of psychosocial distress similar to rates found in Western countries. Contact with the PCT was established in only 36% of significantly distressed patients, despite a proactive outreach program. It is very important to have screening results made available in a timely fashion to the psycho-oncology team so that appropriate care can be offered promptly.

Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers.

The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6–8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire.

A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as “knowing what to expect in the future,” “knowing who to contact if concerned,” and “equipment to help care.” The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family.

The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.

Physicians and nurses do not assess spirituality routinely, even though spiritual care is a vital part of palliative care for patients with an advanced serious illness. The aim of our study was to determine whether a training program for healthcare professionals on spirituality and the taking of a spiritual history would result in improved patient quality of life (QoL) and spiritual well-being.

This was a cluster-controlled trial of a spiritual care training program for palliative care doctors and nurses. Three of seven clinical teams (clusters) received the intervention, while the other four served as controls. Included patients were newly referred to the palliative care service, had an estimated survival of more than one month, and were aware of their diagnosis and prognosis. The primary outcome measure was the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being (FACIT–Sp) patient-reported questionnaire, which patients completed at two timepoints. Total FACIT–Sp score includes the Functional Assessment of Cancer Therapy–General (FACT–G) questionnaire, which measures overall quality of life, as well as a spiritual well-being score.

Some 144 patients completed the FACIT–Sp at both timepoints—74 in the control group and 70 in the intervention group. The change in overall quality of life, measured by change in FACT–G scores, was 3.89 points (95% confidence interval [CI95%] = –0.42 to 8.19, p = 0.076) higher in the intervention group than in the control group. The difference between the intervention and control groups in terms of change in spiritual well-being was 0.32 (CI95% = –2.23 to 2.88, p = 0.804).

A brief spiritual care training program can possibly help bring about enhanced improvement of global patient QoL, but the effect on patients' spiritual well-being was not as evident in our participants. Further study with larger sample sizes is needed to allow for more definite conclusions to be drawn.

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.

Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.

Patients' experiences were represented by three themes: “safe at home,” “facilitated and more honest communication,” and “feeling like a unit of care.” Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.

Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

Advanced care plans (ACPs) are designed to convey the wishes of patients with regards to their care in the event of incapacity. There are a number of prerequisites for creation of an effective ACP. First, the patient must be aware of their condition, their prognosis, the likely trajectory of the illness, and the potential treatment options available to them. Second, patient input into ACP must be free of any coercive factors. Third, the patient must be able to remain involved in adapting their ACP as their condition evolves. Continued use of familial determination and collusion within the local healthcare system, however, has raised concerns that the basic requirements for effective ACP cannot be met.

To assess the credibility of these concerns, we employed a video vignette approach depicting a family of three adult children discussing whether or not to reveal a cancer diagnosis to their mother. Semistructured interviews with 72 oncology patients and 60 of their caregivers were conducted afterwards to explore the views of the participants on the different positions taken by the children.

Collusion, family-centric decision making, adulteration of information provided to patients, and circumnavigation of patient involvement appear to be context-dependent. Patients and families alike believe that patients should be told of their conditions. However, the incidence of collusion and familial determination increases with determinations of a poor prognosis, a poor anticipated response to chemotherapy, and a poor premorbid health status. Financial considerations with respect to care determinations remain secondary considerations.

Our data suggest that ACPs can be effectively constructed in family-centric societies so long as healthcare professionals continue to update and educate families on the patient's situation. Collusion and familial intervention in the decision-making process are part of efforts to protect the patient from distress and are neither solely dependent on cultural nor an “all-or-nothing” phenomenon. The response of families are context-dependent and patient-specific, weighing the patient's right to know and prepare and the potential distress it is likely to cause. In most cases, the news is broken gently over time to allow the patient to digest the information and for the family to assess how well they cope with the news. Furthermore, the actions of families are dependent upon their understanding of the situation, highlighting the need for continued engagement with healthcare professionals.

Young adults with cancer experience high levels of psychological distress. Group interventions for cancer patients have been effective in reducing levels of psychological distress but suffer from high levels of attrition and serve a limited geographic area. In a quality-improvement project, we converted an existing in-person support group to a telemedicine format in the hopes of improving attendance and reducing geographic disparities in access to care.

Eight young adults (18–40 years) with cancer were recruited from across Colorado. Participants received a tablet equipped with Wi-Fi and downloaded an HIPAA-compliant video-conferencing application. Participants attended six weekly supportive psychotherapy sessions.

Participants found the group to be beneficial: the technology worked, they enjoyed the group format, and they would recommend it to others. The novel treatment interface allowed for low attrition rates due to the flexibility of a patient's location during the intervention. It allowed for provision of services to a geographically diverse population of medically ill young adults, as participants lived an average of 148 miles from the cancer center (range = 25–406 miles).

Internet-based mental health care is an area of growing interest for providers, but few studies have evaluated its efficacy in patients with cancer, and even fewer in young adults with cancer. Incorporating technological advances into clinical practice will increase access to care, reduce geographic health disparities, and provide more consistent services.

The management of and prognosis for delirium are affected by its subtype: hypoactive, hyperactive, mixed, and none. The DMSS–4, an abbreviated version of the Delirium Motor Symptom Scale, is a brief instrument for the assessment of delirium subtypes. However, it has not yet been evaluated in an intensive care setting.

We performed a prospective/descriptive cohort study in order to determine the internal consistency, reliability, and validity of the relevant items of the DMSS–4 versus the Delirium Rating Scale–Revised-98 (DRS–R-98) and the original DMSS in a surgical intensive care setting.

A total of 289 elderly, predominantly male patients were screened for delirium, and 122 were included in our sample. The internal consistency of the DMSS–4 items was excellent (Cronbach's α = 0.92), and between the DMSS–4 and DRS–R-98 the overall concurrent validity was substantial (Cramer's V = 0.67). Within individual motor subtypes, concurrent validity remained at least substantial (Cohen's κ = 0.65–0.81) and sensitivity high (69.8 to 82.2%), in contrast to those of the no-motor subtype, with less validity and sensitivity (κ = 0.28, 22%). Similarly, total concurrent validity between the DMSS–4 and the original DMSS reached perfection (Cramer's V = 0.83), as did agreement between the subtypes (κ = 0.83–0.92), while sensitivity remained high (88.2–100%). Only in those with delirium with no-motor subtype was agreement moderate (κ = 0.56) and sensitivity lower (67%). Specificity was high across all subtypes (91.2–99.1%). The DMSS–4 yielded very sensitive ratings, particularly for hypoactive and hyperactive motor symptoms, and interrater agreement was excellent (Fleiss's κ = 0.83).

We found the DMSS–4 to be a most reliable and valid brief assessment of delirium in characterizing the subtypes of delirium in an intensive care setting, with increased sensitivity to hypoactive and hyperactive motor alterations.

Few decision aids are available for patients with a serious illness who face many treatment and end-of-life decisions. We evaluated the Looking Ahead: Choices for Medical Care When You're Seriously Ill® patient decision aid (PtDA), one component of an early palliative care clinical trial.

Our participants included individuals with advanced cancer and their caregivers who had participated in the ENABLE (Educate, Nurture, Advise, Before Life Ends) early palliative care telehealth randomized controlled trial (RCT) conducted in a National Cancer Institute-designated cancer center, a U.S. Department of Veterans Affairs medical center, and affiliated outreach clinics in rural New England. ENABLE included six weekly patient and three weekly family caregiver structured sessions. Participants watched the Looking Ahead PtDA prior to session 3, which covered content on decision making and advance care planning. Nurse coaches employed semistructured interviews to obtain feedback from consecutive patient and caregiver participants approximately one week after viewing the Looking Ahead PtDA program (booklet and DVD).

Between April 1, 2011, and October 31, 2012, 57 patients (mean age = 64), 42% of whom had lung and 23% gastrointestinal cancer, and 20 caregivers (mean age = 59), 80% of whom were spouses, completed the PtDA evaluation. Participants reported a high degree of satisfaction with the PtDA format, as well as with its length and clarity. They found the format of using patient interviews “validating.” The key themes were: (1) “the earlier the better” to view the PtDA; (2) feeling empowered, aware of different options, and an urgency to participate in advance care planning.

The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.

This study aimed to contribute to the validation of the Portuguese version of the Prolonged Grief Disorder Questionnaire–Predeath (PG–12), examining its psychometric properties, including factorial, discriminant, and predictive validity. The prevalence of predeath prolonged grief disorder (PGD) and its psychosocial correlates were also analyzed.

The PG–12 was assessed in a sample of family caregivers (FCs) of oncological patients in palliative care. The factorial and discriminant validity of the PG–12 were evaluated by confirmatory factor analysis. The prevalence of predeath PGD was calculated and correlated with sociodemographic characteristics, perception of illness, intensity of care, coping, and caregiver burden. Prospective data were used to assess predictive validity.

The sample was composed of 94 FCs, mostly female (78.8%) and daughters (61.3%), with a mean age of 52.02 (SD = 12.87). The PG–12 has been shown to be reliable, to have high internal consistency, to be monofactorial in structure, and to be independent from depression, anxiety, and burden, although predeath grief influences these symptoms. In our sample, 33% met the criteria for predeath PGD. The circumstances and coping mechanisms are also correlated with predeath grief. The PG–12 has also been shown to be predictive of postdeath outcome.

The PG–12 can be a useful screening tool for early identification of risk for maladjustment to loss among family caregivers.

Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care.

Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC).

A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes.

Two themes were constructed through thematic analysis: (1) security (“They are always available,” “I get the help I need quickly”); and (2) continuity of care (“They know me/us, our whole situation and they really care”). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions.

Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

Throughout their lives, people are confronted with unexpected life events, which can be difficult to incorporate into their life narratives. Such a confrontation can result in an experience of contingency. Different ways of relating to contingency have been described by Wuchterl: denying, acknowledging, and “encounter with the Other.” In the present article, we aim to trace these theoretical distinctions in real-life experiences of patients.

We analyzed 45 interviews using the constant comparative method with a directed content analysis approach in the Atlas.ti coding program. The interviews originated from a randomized controlled trial evaluating an assisted reflection on life events and ultimate life goals. Seven spiritual counselors from six hospitals in the Netherlands conducted the interviews from July of 2014 to March of 2016. All 45 patients had advanced cancer.

We found four different modes into which relating to contingency can be classified: denying, acknowledging, accepting, and receiving. With denying, patients did not mention any impact of the life event on their lives. In acknowledging, the impact was recognized and a start was made to incorporate the event into their life. In accepting, patients went through a process of reinterpretation of the event. In receiving, patients talked about receiving insights from their illness and living a more conscious life.

Our study is the first to investigate the different ways of relating to contingency in clinical practice. The defined modes will improve our understanding of the various ways in which cancer patients relate to their disease, allowing caregivers to better target and shape individual care.

In the intensive care setting, delirium is a common occurrence that comes with subsequent adversities. Therefore, several instruments have been developed to screen for and detect delirium. Their validity and psychometric properties, however, remain controversial.

In this prospective cohort study, the Confusion Assessment Method for the Intensive Care Unit (CAM–ICU) and the Intensive Care Delirium Screening Checklist (ICDSC) were evaluated versus the DSM–IV–TR in the diagnosis of delirium with respect to their validity and psychometric properties.

Out of some 289 patients, 210 with matching CAM–ICU, ICDSC, and DSM–IV–TR diagnoses were included. Between the scales, the prevalence of delirium ranged from 23.3% with the CAM–ICU, to 30.5% with the ICDSC, to 43.8% with the DSM–IV–TR criteria. The CAM–ICU showed only moderate concurrent validity (Cohen's κ = 0.44) and sensitivity (50%), but high specificity (95%). The ICDSC also reached moderate agreement (Cohen's κ = 0.60) and sensitivity (63%) while being very specific (95%). Between the CAM–ICU and the ICDSC, the concurrent validity was again only moderate (Cohen's κ = 0.56); however, the ICDSC yielded higher sensitivity and specificity (78 and 83%, respectively).

In the daily clinical routine, neither the CAM–ICU nor the ICDSC, common tools used in screening and detecting delirium in the intensive care setting, reached sufficient concurrent validity; nor did they outperform the DSM–IV–TR diagnostic criteria with respect to sensitivity or positive prediction, but they were very specific. Thus, the non-prediction by the CAM–ICU or ICDSC did not refute the presence of delirium. Between the CAM–ICU and ICDSC, the ICDSC proved to be the more accurate instrument.

The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer.

This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13–16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals.

Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs.

This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.

Following the loss of a loved one to cancer, a significant subset of bereaved family members are at heightened risk for mental and physical health problems; however, these family members often “fall through the cracks” of the healthcare system. A brief, clinically useful self-report bereavement risk-screening tool could facilitate more effective identification of family members in need of psychosocial support before and after a cancer loss. Thus, the purpose of this study was to develop and refine the Bereavement Risk Inventory and Screening Questionnaire (BRISQ), a self-report bereavement screening tool, and to assess its utility using feedback from bereavement experts.

Quantitative and qualitative feedback from a panel of 15 clinical and research experts in bereavement was obtained through an online survey to identify the most clinically useful items and understand expert opinion on bereavement screening.

The qualitative and quantitative feedback were synthesized, resulting in a 22% reduction of the item pool. While there was a general consensus between experts on the most clinically useful risk factors for bereavement-related mental health challenges and on the utility of screening, they also offered feedback on language and formatting that guided substantial revisions to the BRISQ.

These findings were utilized to refine the BRISQ in preparation for a second study to obtain family member feedback on the measure. By incorporating both expert and family member feedback, the intention is to create a screening tool that represents top clinical and research knowledge in bereavement in a way that effectively addresses barriers to care.

Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation.

We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works.

A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation.

Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

Our aim was to explore preparation for the end of life (EoL) and life closure among persons with advanced metastatic lung cancer. Understanding quality of life through the lens of preparation and completion is important since the trajectory of lung cancer can be relatively short, often leading to application of cancer-directed therapies near death without the opportunity for advance planning or palliative care. Clinical research is needed to understand the kinds of distress specific to older adults with advanced lung cancer that are amendable to palliative care interventions.

We employed an exploratory cross-sectional design to examine psychosocial and existential concerns among a purposive sample (N = 30) of advanced lung cancer patients using the “end-of-life preparation” and “life completion” subscales of the Quality of Life at the End of Life (QUAL–E) questionnaire. Nonparametric methods were employed to analyze preparation, completion, global quality of life (QoL), and the associations among depressive symptoms, preparation, completion, and global QoL.

Higher scores on life completion were associated with better global QoL, and with items related to transcendence, communicative acts, and interpersonal relationships demonstrating important contributions. The perception of being a future burden on family members was the greatest concern within the preparation domain. Depressive symptoms were not associated with preparation, completion, or global QoL.

Psychosocial and existential issues contribute to QoL at the EoL among older adults with late-stage lung cancer during cancer-directed therapy, concurrent care, and hospice. The role of preparation, especially self-perceived burden, merits further research early on in the oncological setting. The preparation and life completion subscales of the QUAL–E are feasible clinical tools for facilitating dyadic communication about sensitive topics in the palliative care setting.

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.

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.

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.

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.