The psycho-social needs of patients with advanced chronic illness and their families include emotional, spiritual, and bereavement care. With a funding initiative by the La Caixa Foundation and design by the WHO Collaborating Center, we developed and implemented a program for the comprehensive care of terminally-ill individuals and their families, in Spain. The intent was to improve the psycho-social and spiritual dimensions of care, to generate experience and evidence, to explore models, and to act as catalyst in the Spanish National Strategy for Palliative Care.

We reviewed the process of design, implementation, and initial evaluation of the program at 18 months.

Thirty psycho-social teams’ (PST) acting as support teams projects were initiated. There were 120 full-time healthcare professionals appointed (58% clinical psychologists). These professionals received training through a comprehensive postgraduate course, and all used the same documentation. Some results were collated 18 months post-implementation. The total number of patients attended to was 10,954, and the number of relatives was 17,715. The preliminary clinical outcomes show a significant improvement in well-being, and a decrease in anxiety and insomnia, although there was a smaller impact on alleviating depression. Healthcare professionals collated results on satisfaction with palliative care (PC) services.

Based on these preliminary results, we suggest that the PST can be a model of organization that is effective and efficient in improving the psycho-social and spiritual aspects of care of terminally ill patients. Further follow-up and evaluation with validated tools are the main goals for the immediate future.

Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.

Both family members during ongoing APHC and family members 3–9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.

Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.

The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

The aim of the study was to describe family members' experiences of content, structure, and approach of a potential intervention including a support group program for family members of persons with life-threatening illness.

The study was a pilot project in a developmental phase in which a potential intervention, a support group program, was investigated. The design of the study was qualitative descriptive. Twenty-nine family members were interviewed by telephone after taking part in the program. The interviews were analyzed using qualitative content analysis.

The results indicate that the support group program could work as an acceptable and useful intervention for family members. The program was experienced to cover topics of immediate interest reflecting life close to severely ill persons. The structure of the program was found to be inviting, offering an opportunity to establish relationships with other participants and the caring team in a warm atmosphere.

The study indicates the importance of health professionals inviting and interacting with family members during ongoing palliative care. The results could inspire nursing staff to initiate, develop, and deliver similar interventions.

Religious participation is positively associated with mental health, but attendance at worship services declines during serious illness. This study assessed whether home visits by clergy or laity provide benefits to seriously ill patients who may have difficulty attending religious services.

A cross-sectional study design nested in an observational epidemiologic cohort study was used. The regionally representative sample of patients had metastatic lung, colorectal, breast, and prostate cancer (n = 70); Class III and IV congestive heart failure (n = 70); or chronic obstructive pulmonary disease with hypercapnea (n = 70) and were observed regarding clergy–laity support in their natural environments. Dependent variable: 10-item Center for Epidemiologic Studies – Depression Scale. Independent variable: A one-item question measuring how much helpful support patients received from clergy or other persons from church, temple, synagogue, or mosque. Covariates: demographic, health, social support, religiousness.

Depressed mood was negatively associated with clergy–laity support in a non-linear pattern. Depressed mood was also positively associated with functional deficits and a lifetime history of difficulties related to religious involvement.

In lieu of worship attendance when people are sick, home visits by members of a patient's religious community may bolster mood by providing continuity of instrumental, emotional, and spiritual support.

The purpose of this study was to explore the hope experience of registered nurses (RNs) who provide palliative care services in community settings. The specific aims of the study were to (1) describe their hope experience, (2) develop a reflexive understanding of the processes of their hope, and (3) construct a substantive theory of hope of palliative care RNs.

Using constructivist grounded theory methodology, purposeful theoretical sampling was used to enroll 14 practicing community palliative care RNs in the study. Twenty-seven open-ended telephone interviews were conducted and nine daily journal entries on hope were copied. Interviews and journals were transcribed verbatim and analyzed using Charmaz's grounded theory approach.

Participants described their hope as a positive state of being involving a perseverant and realistic understanding of future possibilities. Their hope sustained and motivated them, and helped them to strive to provide high-quality care. The main concern for participants was keeping their hope when faced with work life challenges and contrasting viewpoints (i.e., when their hopes differed from the hopes of others around them). They dealt with this through harmonizing their hope by the processes of “looking both ways,” “connecting with others,” “seeing the bigger picture,” and “trying to make a difference.” Their experience of hope was defined within the social context of their work and lives.

The results of this study suggest that hope is very important to palliative care RNs, in that it helps them to persevere and sustains them when faced with work life challenges in their practice. This study also highlights the need for continued research in this area as there appears to be a lack of evidence on the meaning of hope for healthcare professionals, and, in particular, understanding hope in the context of palliative and end-of-life care delivery.

To describe enrolled nurses' (ENs') experiences of working in a sitting service for dying patients at home (SSH).

The ENs who participated in this study had permanent jobs in community care/ primary care, but were also employed part time in a special home-sitting service organization in a municipality in the south of Sweden. Data were collected by four focus group interviews with 17 enrolled nurses. Qualitative content analysis was used to analyze the data.

Care-giving in SSH was a balancing act between a sense of security and a feeling of vulnerability. Feeling secure and valued and that one is developing both professionally and personally, stemmed from working in partnership, whereas a feeling of vulnerability was associated with managing closeness and distance, being a mediator, having responsibility and feeling guilty, feeling hindered from doing good, facing loneliness, and affecting private lives.

SSH makes it possible for people who are terminally ill to remain at home until they die. If the SSH organization were not an option for dying patients and their families, the pressure on the healthcare would be dramatically increased.

The number of diagnosed cases of stomach cancer in Western countries is relatively small compared to prevalence rates in Eastern populations. This disparity creates a general lack of information and understanding of the experience of patients treated for this disease in North America. Surgical removal of the stomach, also called total gastrectomy (TG), is presently the only curative treatment available to patients with stomach cancer. Considering the impact such a procedure may have, very little is known about what factors influence an individual's postsurgical quality of life (QL).

This article reviews current literature and examines three unique case studies. Semi-structured interviews were analyzed using content analysis, a qualitative analytic approach for reporting combined subject responses.

Participants included one 37-year-old man with multiple polyps in his stomach and a family history of stomach cancer, one 18 year-old man with a confirmed CDH1 mutation and a family history of stomach cancer, and one 33-year-old man with confirmed metastatic gastric adenocarcinoma. Subjective patient experience was categorized into: (1) making the decision, (2) treatment impact, and (3) life after TG. Prior to surgery, all patients carefully evaluated their perceived risk compared to the treatment consequences and indicated that a certain event triggered their decision. The largest treatment impacts were learning to eat again and adjusting to the physical changes. Each patient endorsed that their experience made them appreciate and make the most of life.

This currently represents the only study to investigate the lived experience of TG for prophylaxis or palliation in individuals with and without genetic risk for stomach cancer. Understanding this process will allow all members of the cancer care team, and the patients themselves, to better understand the factors involved in decision making and postoperative adjustment. Fruitful avenues for future research are discussed.

Because caregiving to an adult with cancer is a dynamic process, a caregiver's perceived burden and psychosocial concerns may be different at different phases of the patient's disease. There is evidence of escalation in caregiver anxiety, depression, and psychological distress as the patient's functional status declines and as the patient nears death. The purpose of this review was to organize the literature in a meaningful way that can potentially capture the unique needs of caregivers to patients receiving palliative and/or hospice care, and caregivers who are in the post-death bereavement phase.

A systematic review was conducted. Major databases were searched for non-intervention descriptive studies that included psychosocial variables of family caregivers to adults with cancer during the palliative, hospice, or bereavement phases.

The 19 studies reviewed were conducted in six countries and varied considerably by samples, outcome measures, methodologies, and analytic approaches. Despite limiting to the palliative, hospice, and bereavement phases, inconsistent results were found for key variables, such as age, gender, and relationship to the patient. When patient–caregiver dyad analysis was conducted, with rare exception, there was mutuality between the patient's condition and the caregiver's response. Across the 19 studies, 89 unique instruments were used, almost half of which were study specific with no psychometric testing reported.

As a direct consequence of assuming the caregiver role, cancer family caregivers in the palliative, hospice, and bereavement phases are at increased risk for physical and mental morbidity. Often, the psychological burden of the caregiver exceeds that of the critically ill patient. It is possible that distressed caregivers have a deleterious influence on patient well-being. This review demonstrates the need to develop research standards, especially regarding measurement instruments, so that caregiver research can mature and interventions can be developed to support family caregivers.