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.

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.

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.

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.

The experience of “meaning in life” (MiL) is a major aspect of life satisfaction and psychological well-being. To assess this highly individual construct, idiographic measures with open-response formats have been developed. However, it can be challenging to categorize these individual experiences for interindividual comparisons. Our study aimed to derive MiL categories from individual listings and develop an integrative MiL model.

University students were asked to rate 58 MiL providing aspects recently found in a nationwide study using the Schedule for Meaning in Life Evaluation (SMiLE), an MiL instrument allowing for open responses. Pearson's correlations and factor analyses were used to test the unidimensionality of subsequently derived higher-order MiL categories. Multidimensional scaling, cluster analysis, and factor analysis were performed to further analyze a latent MiL structure.

A total of 340 students participated in the study. Some 11 unidimensional categories consisting of 34 meaning-providing aspects were summarized into a circumplex model with four MiL domains: leisure/health, work/finances, culture/spirituality, and relationships (family, partnership, social relations).

This model seems to incorporate a major portion of individual respondent-generated MiL listings. It may be useful for future idiographic MiL studies to help organize individual experiences of MiL and allow for higher-level interindividual comparisons. Further studies including different samples are necessary to confirm this model or derive other MiL domains, for example, in palliative care patients or patients who are confronted with a loss of meaning.

The nursing profession demands knowledge, awareness, and experience regarding the ethnic, religious, cultural, and social constructs involved in patient care. Non-Muslim nurses must have theoretical and empirical insights into treatment methods and caring for terminally ill Muslim patients. In particular, non-Muslim nurses should acquire knowledge of Islamic rules and regulations. They should also be familiar with the unique religious and sociocultural practices that pertain to healthcare practices. Our study aimed to explore non-Muslim nurses' experiences in caring for terminally ill Muslim patients and their families regarding physical, social, cultural, spiritual, and religious practices. The study also sought to investigate the context or situations that influence these experiences as described by the nurses.

In this qualitative descriptive study, 10 nurses working in medical, oncology, and oncology/palliative care units in a tertiary care hospital in Saudi Arabia were interviewed. A modified Stevick–Colaizzi–Keen method was employed for data analysis.

Three main themes constituted the nurses' lived experiences: family matters, end-of-life practices, and nurse challenges. Cultural values, religious practices, and a family approach to the process of care influenced nurses' experiences. Issues related to an absence of palliative care integration and the unavailability of members in the interdisciplinary team also influenced their experiences. Nurses showed a lack of cultural knowledge of some practices due to a lack of awareness of cultural diversity and the unavailability of formal cultural education.

Provision of culturally competent care at the end of life for Muslim patients in Saudi Arabia requires a thoughtful understanding of religious and cultural practices as well as knowledge of the role of the family throughout the care process. The introduction of a cultural care nursing delivery model that incorporates a cultural education program with Islamic teachings and practices at its core is recommended.

When caring for a loved one with a life-limiting illness, a caregiver's own physical, emotional, and spiritual suffering can be profound. While many interventions focus on physical and emotional well-being, few caregiver interventions address existential and spiritual needs and the meaning that caregivers ascribe to their role. To evaluate the feasibility and acceptability of the process and content of Caregiver Outlook, we employed a manualized chaplain-led intervention to improve well-being by exploring role-related meaning among caregivers of patients with a life-limiting illness.

We conducted a single-arm pre–post pilot evaluation among caregivers of patients with advanced cancer or amyotrophic lateral sclerosis (ALS). Caregivers completed three chaplain-led intervention sessions focusing on (1) a relationship review, (2) forgiveness, and (3) legacy. Outcomes administered at baseline and at 1 and 2 weeks after the intervention included quality of life, anxiety, depression, spiritual well-being, religious coping, caregiver burden, and grief.

The sample (N = 31) included a range of socioeconomic status groups, and the average age was approximately 60 years. A third of them worked full-time. Some 74% of our participants cared for a spouse or partner, and the other quarter of the sample cared for a parent (13%), child (10%), or other close family member (3%). At baseline, participants did not demonstrate clinical threshold levels of anxiety, depression, or other indicators of distress. Outcomes were stable over time. The qualitative results showed the ways in which Caregiver Outlook was assistive: stepping back from day-to-day tasks, the opportunity to process emotions, reflecting on support received, provoking thoughts and emotions between sessions, discussing role changes, stimulating communication with others, and the anonymity of a phone conversation. Both religious and nonreligious participants were pleased with administration of the chaplain intervention.

The acceptability and feasibility of Caregiver Outlook were demonstrated among caregivers of patients with an advanced illness. Our pilot findings suggest minor modifications to study participant screening, interventionist guidance, and the study measures.

Several studies have successfully tested psychosocial interventions in palliative care patients. Counseling is the technique most often employed. Dignity therapy (DT) has recently emerged as a tool that can be utilized to address patients' needs at the end of life. The aims of our study were to examine the effects of DT and counseling and to offer useful information that could be put into practice to better meet patients' needs.

We developed a pilot randomized controlled trial at the Home Care Unit of the General University Hospital of Valencia (Spain). Some 70 patients were assigned to two therapy groups. The measurement instruments employed included the Patient Dignity Inventory (PDI), the Hospital Anxiety and Depression Scale (HADS), the Brief Resilient Coping Scale (BRCS), the GES Questionnaire, the Duke–UNC-11 Functional Social Support Questionnaire, and two items from the EORTC Quality of Life C30 Questionnaire (EORTC–QLQ–C30).

The results of repeated-measures t tests showed statistically significant differences with respect to the dimensions of dignity, anxiety, spirituality, and quality of life for both groups. However, depression increased in the DT group after the intervention, and there were no differences with respect to resilience. Therapy in the counseling group did not negatively affect depression, and resilience did improve. When post-intervention differences between groups were calculated, statistically significant differences in anxiety were found, with lower scores in the counseling group (t(68) = –2.341, p = 0.022, d = 0.560).

Our study provided evidence for the efficacy of dignity therapy and counseling in improving the well-being of palliative home care patients, and it found better results in the counseling therapy group with respect to depression, resilience, and anxiety.

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients.

We investigated a wide range of factors related to the patient–family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI–7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI–10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden.

We analyzed 227 patient–family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden.

Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity.

Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support.

After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale.

The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

Cancer is a leading cause of death worldwide. Religiosity is a factor that may help cancer patients to cope with their disease. The aim of the current study was to validate a Persian translation of the Muslim Religiosity Scale (MRS) in a population of Iranian patients with cancer.

Two thousand patients were invited to participate in this multisite study, of whom 1,879 participated. Patients completed a demographic questionnaire, the MRS, and several scales, including the Patient Health Questionnaire–9, the Hospital Anxiety and Depression Scale, the Perceived Social Support Scale, and the SF–12 quality of life measure. Backward–forward translation was employed to develop a Persian-language version of the MRS. Cronbach's alpha and two-week test–retest reliability were also assessed. Convergent and discriminative validity as well as the factor structure of the scale were also examined.

The internal reliability (α) of the religious practices and beliefs subscales was 0.88 and 0.92, respectively. The intraclass correlation coefficient (ICC) was 0.92 (range = 0.75–1.0). The scale demonstrated solid convergent and discriminative validity. Factor analysis indicated two main factors, as predicted, with an appropriate goodness of fit (χ2 = 76.23, RMSEA = 0.065). Such factors as marital status, quality of life, social support, and self-efficacy were positively associated with MRS total score, while anxiety, depression, and suicide ideation had negative associations.

The MRS is a useful tool for assessing religiosity in Iranian patients with cancer and is associated with a number of important health outcomes.

Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context.

Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings.

Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children.

The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.

This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children.

In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).

Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0–10) and rated the child's death as highly peaceful (median 9).

The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.

We examined the utility of a brief values inventory as a discussion aid to elicit patients' values and goals for end-of-life (EoL) care during audiotaped outpatient physician–patient encounters.

Participants were seriously ill male outpatients (n = 120) at a large urban Veterans Affairs medical center. We conducted a pilot randomized controlled trial, randomizing 60 patients to either the intervention (with the values inventory) or usual care. We used descriptive statistics and qualitative methods to analyze the data. We coded any EoL discussions and recorded the length of such discussions.

A total of 8 patients (13%) in the control group and 13 (23%) in the intervention group had EoL discussions with a physician (p = 0.77). All EoL discussions in the control group were initiated by the physician, compared with only five (38%) in the intervention group. Because most EoL discussions took place toward the end of the encounter, discussions were usually brief.

The outpatient setting has been promoted as a better place for discussing EoL care than a hospital during an acute hospitalization for a chronic serious illness. However, the low effectiveness of our intervention calls into question the feasibility of discussing EoL care during a single outpatient visit. Allowing extra time or an extra visit for EoL discussions might increase the efficacy of advance care planning.