As medical technology has improved, there has been a marked increase in the numbers of children with life-limiting conditions being managed in the community. Few studies have evaluated the life worlds of the parents of these children. However, there have been studies that have reported feelings of isolation and depression among mothers. This article reports a study that highlights the mental health implications of the lived experience of parenting a child with a life-limiting condition.

Semistructured interviews were conducted with 10 parents of children with life-limiting conditions and analyzed using a phenomenological method.

The essential meaning of the phenomenon “the lived experience of parenting a child with a life limiting condition” is understood as a full-time emotional struggle involving six continuous constituents: inner drive, feeling responsible, psychological effects, threatened self image, social withdrawal, and a fear of reaching the bottom line.

Very little clinical attention is focused upon the wider issues that affect parents dealing with caring for a child with a life-limiting condition.

Adolescence is characterized by increasing liberation from parents as the young person evolves into an independent individual. Experiencing the serious illness and death of a parent during this phase implies great stress. Serious illness involves uncertainty, worry, and hope at the same time that it is necessary for everyday life to function. This study sought to describe adolescents' experiences in the serious illness and death of a parent.

The study was carried out using a qualitative method. Data were collected in interviews with five adolescents who were 14–17 years of age when one of their parents died.

The results show that the parent's illness was a strong threat, as the adolescents understood that their own and the family's lives would be greatly changed by the illness/death. The incomprehensibility of the parent's serious illness and death was a threatening condition on its own. The adolescents strived to make the inconceivable more conceivable to understand what was happening. They also described the necessity of finding different ways of relating to and managing the threat, such as restoring order, seeking closeness, adapting, gaining control, avoiding talking about the illness, not accepting and counting the parent out. The adolescents described feelings of being alone and alienated, even though they were close to family and friends and they did not actively seek support. The lives of the adolescents were changed by their experiences, beyond their bereavement over the parent. They felt that they had become more mature than their friends and that there had been a change in their thinking about life, changes in values, and changes in their views of relationships with other people.

The results of the present study can form a basis for developing a support program whose purpose would be to prevent effects on health.

To improve the palliative care and more effectively meet the needs of young patients and their families at the end of life, the authors investigated the place of death of adolescents and young adults treated in their institution and identified some of the factors influencing the choice of place of death.

The parents and/or partners of adolescents and young adults (15 to 25 years old) who died at Institut Curie (cancer center) between 2000 and 2003 were contacted. Twenty-one families agreed to participate in the interview between October 2005 and April 2006. Analysis of the interviews comprised a descriptive part and a thematic part.

Nineteen out of 21 (90%) families declared that they did not really choose their child's place of death due to lack of time. However, all families said that they preferred the hospital. No family attended a bereavement group after their child's death and only 3 families (14%) consulted a mental health care professional. Thematic analysis showed that representations and beliefs concerning life and death at least partly determined the family's capacity to discuss the place of death with their child.

Although progress has been made over recent years in France, there is still considerable room for improvement of palliative care to more effectively meet the needs of young patients and their families at the end of life.

Hospice utilization lasting for 2 weeks or less before death is considered “short.” Short, late-stage hospice admissions have been viewed as inadequate for providing end-stage symptom management, maximal comfort, and a comprehensive focus on life closure and as an underutilization of the Medicare Hospice Benefit. The purpose of this study was to explore psychosocial dynamics during late-stage hospice admissions by comparing the perspectives of hospice professionals and family caregivers. Salutogenic principles and concepts from Antonovsky's Sense of Coherence Theory (SOC) guided the inquiry.

This exploratory, descriptive study involved a developmental design. First, hospice professionals' perspectives about psychosocial dynamics commonly observed in late-stage admissions were gathered. Themes were distilled into a Psychosocial Factors Checklist (PFC). Second, interviews that incorporated open-ended questions and the PFC were conducted with 56 family caregivers of hospice patients who died from cancer within 2 weeks of admission. Participant responses were transcribed and entered into Atlas ti software for data management and coding. Responses to the PFC were clustered around the SOC constructs (manageability, comprehensibility, meaningfulness) to create corresponding subscales. Interitem correlations were conducted to explore the associations among items.

Late-stage admissions were a crisis (54%), chaotic (43%), emotional (80%), and a time of open communication (80%) and meaningful conversations (73%). Hospice utilization was “just long enough” (49%) and “too short” (49%). The Manageability subscale (M = 4.09) suggested that caregivers experienced moderate difficulty. Manageability included physical challenges, emotional responses, informational needs, and benefits/resources. Comprehensibility emerged from medical results, visual signs, and hospice guidance. Meaningfulness was personal-individual, family-shared, and spiritual-existential.

Hospice professionals and caregivers view late-stage admissions differently; they are a crisis for some but not all families. The development of a quick assessment tool for late-stage admissions has the potential for meaningful and effective intervention when time is of the essence.

The negative impact of a palliative cancer diagnosis on the quality of life of patients and their partners is well documented. Unfortunately, research on interventions to improve psychological and spiritual well-being of these couples has been considered impractical because of the deleterious influence of disease progression on participation. This study evaluated the feasibility of offering the Tapestry Retreat, an intensive psychosocial intervention for palliative care patients and their partners.

Participants in the Tapestry Retreat included 15 patients with advanced breast, prostate, or colon cancer and their partners (n = 30). Also included was a natural history group consisting of 20 patients and their partners (n = 40). All couples completed questionnaires related to quality of life, distress, marital satisfaction, and existential concerns at baseline, after the retreat or 1 month after baseline, and then again at 3, 6, 9, and 12 months.

Patients in the Tapestry group were significantly more likely to be women who had received prior psychological support and were less comfortable with their finances. Partners attending the Tapestry retreat were also more likely to have received prior psychological support.

Despite issues with recruitment and retention, retreat participation was considered feasible. Recommendations for future research are discussed.

Symptom assessment is important in palliative care. Computerized technology (CT) is now available for use in such assessments. Barriers against implementation of CT in health care in general are well known, but less is known about how such technology is perceived by palliative health care personnel. The aim of the present study was to investigate the experience with implementation of CT among personnel in symptom assessment at a palliative care unit.

Seventeen respondents from a hospital ward unit and an outpatient clinic unit participated in an in-depth interview. A qualitative approach was used in collecting and analyzing the data.

Respondents at the hospital ward unit were better motivated than respondents at an outpatient clinic unit. It was stated that the health condition of the patient is important in their perception of the tool as useful or not. Conflicts between “high tech” and “high touch” were reported in both units.

When the implementation process is conducted in such a manner that the health care personnel are involved, benefits of the tool can be realized. Thus, effective implementation and use of high tech can lead to more time released for high touch.

The treatment experience for patients undergoing surgical treatment of colorectal cancer (CRC) liver metastasis is understudied. This study sought to identify common themes in this experience in order to identify factors of importance in treatment decision making.

The study utilized the phenomenological qualitative research approach. In-depth patient interviews conducted by a nurse researcher were tape-recorded and analyzed using the Colaizzi procedural steps.

All participants were interviewed and included 7 men and 5 women, ages 43–75, each with treatment experience with both chemotherapy and major surgery. Participants did not recall their decision to undergo liver surgery as a single event, rather as another in a series of health care choices during the long continuum of their CRC cancer disease experience. Seven common themes that emerged from the analyses of interviews as having significant impact on their treatment experience were communication with the health care provider, support from others, the patient's own attitude, cure uncertainty, coping strategies, hospital care concerns, and Internet information.

This study identified factors of importance to patients that may serve to enhance communication, education, treatment satisfaction, and access to surgery for patients with CRC liver metastases. Further validation of our findings with a broader patient population is necessary.

There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues.

Half of the participants recruited from our rural U.S. comprehensive cancer center and affiliated clinics were randomly assigned to a phone-based, nurse-led educational, care coordination palliative care intervention model. Intervention services were provided to half of the participants weekly for the first month and then monthly until death, including bereavement follow-up call to the caregiver. The other half of the participants were assigned to care as usual. Symptoms, quality of life, mood, and functional status were assessed every 3 months until death.

Baseline data of 279 participants were similar to normative samples. Solutions to methodological challenges of recruitment, missing data, and “usual care” control group contamination are described.

It is feasible to overcome many of the methodological challenges to conducting a rigorous palliative care RCT.

Recent research shows that almost every second woman with breast cancer is depressed or has anxiety; the risk for younger women is even higher. Moreover, research shows that women are at risk for developing depression, also a threat for women with breast cancer. The aim of this randomized controlled clinical trial was to study the outcome of five sessions of art therapy given at a 5-week period of postoperative radiotherapy.

The participants were between 37 and 69 years old; six participants in each group were below 50 years of age. Half of the participants (n = 20) received art therapy and the other half (n = 21) were assigned to a control group. At the first measurement, at least 17% (n = 7) of the participants medicated with antidepressants. Data were collected before and after art therapy and at a 4-month follow-up using self-rating scales that measure self-image (the Structural Analysis of Social Behaviour) and psychiatric symptoms (the Symptom Check List–90).

At follow-up, significant lower ratings of depression, anxiety, and somatic symptoms and less general symptoms were reported for the art therapy group compared to the control group. The regression analysis showed that art therapy relates to lower ratings of depression, anxiety, and general symptoms; chemotherapeutic treatment predicts lower depressive symptoms; in contrast to axilliary surgery and hormonal treatment as well as being a parent predicts higher ratings of anxiety and general symptoms.

The conclusion suggests that art therapy has a long-term effect on the crisis following the breast cancer and its consequences.

The aim of this study was to learn how music therapy sessions, held prior to the death of a loved one, impact spirituality in surviving caregivers of advanced cancer patients.

The method of naturalistic inquiry was used to investigate the spiritual meaning of pre-loss music therapy sessions. Bereaved caregivers of seven different patients, who had been receiving music therapy through a home-based hospice program, participated in individual open-ended interviews. Interviews were recorded, transcribed, and coded. Themes were organized as they emerged.

As caregivers reflected on their experiences in music therapy, they reported autonomous joy (music therapy affected the caregiver directly) and empathic joy (caregivers' joy was based in remembering seeing the patient happy in music therapy). They also noted feelings of empowerment due to the ways they felt they had contributed in the care of the patients through music therapy. The caregivers were found to engage in processes of reflection that inspired these spiritual themes: reflection on the present (connectedness), reflection on the past (remembrance), and reflection on the future (hope). They referred to the ways that the music therapy sessions helped them find connection with self, others (through bringing their loved ones “back to life” and have a “renewal of self”), and the “beyond”; and that times in music therapy brought them happy memories and sentiments of hope. Meaning through transcendence was found to be the overarching trend in this study, as caregivers were lifted from remorse into heightened sense of meaning and gained “airplane views” of their lives.

Pre-loss music therapy can potentially assist caregivers during times of bereavement, as they retain memories of joy and empowerment, rather than memories of pain and distress, and find meaning through transcendence.

This review was undertaken to analyze the research to date and identify areas for future research regarding the associations between parental grief after the death of a child and the subsequent health of the parents, including both their mortality and morbidity risks.

Relevant literature was identified through a search of OVID-Medline, CINAHL, and PsycINFO using variations of the terms “parental grief and bereaved parents” combined with “health,” “illness,” “morbidity,” and “mortality.” Additionally, bibliographies of selected articles were reviewed to identify additional sources. The final sample includes 17 articles.

The literature search revealed a paucity of publications on the topic. However, it also showed that the studies that have been done examining the relationship between parental grief and health outcomes have produced conflicting results in almost every disease state examined. Additionally, several concerns with the quality of existing studies came to light that may bring their results into question. Three primary areas of concern surfaced including lack of consistency in measurement for psychological variables and “soft” self-report health outcomes, questionable methodologies in bereavement research in general, and the lack of a uniform definition of bereaved parents.

Based on these findings, it is clear that more methodologically sound research is necessary to clarify the relationship between parental grief after the death of a child and the parents' subsequent morbidity and mortality risks.