Previous intervention research has shown that group education sessions for carers are effective but not always feasible due to the demands of the caregiving role and the difficulty in getting carers to attend. This project was a consumer-led research initiative to develop and evaluate a multimedia resource (DVD) providing information and support for carers of people receiving palliative care.

Eight carers were recruited from a community palliative care service to form a steering committee for the project. In collaboration with two researchers, the committee discussed the topics that would be included in the resource, developed an interview guide, participated in the filmed interviews, and developed the evaluation program. The steering committee participated in a focus group as part of the evaluation to elicit their experiences of the project. An evaluation was conducted that included the following: questionnaires for 29 carers and 17 palliative care health professionals; follow-up telephone interviews with carers; a focus group with health professionals; and a focus group with the Carer Steering Committee.

The carers and health professionals reported that the DVD was informative (93 and 94%, respectively), realistic (96 and 88%), supportive (93 and 88%), and helpful (83 and 100%). All health professionals and carers reported that they would recommend the resource to carers. Carers on the steering committee reported substantial benefits that involved the opportunity to help others and to openly discuss and reflect on their experiences.

This is an important resource that can be utilized to support family carers and introduce palliative care. Currently, 1500 copies have been distributed to palliative care services and professionals nationwide and is available online at centreforpallcare.org/index.php/resources/carer_dvd/. Development of this DVD represents a strong collaboration between carers and researchers to produce a resource that is informative, supportive, and meaningful.

Although growing numbers of family members provide end-of-life care for dying persons, caregivers frequently report lacking essential information, knowledge, and skills. This analysis explicates what family members learn during the process of providing end-of-life care.

Four qualitative interview studies of family caregivers to those at the end of life (n = 156) formed the basis of a secondary data analysis.

Thematic and cross-comparative analyses found three general kinds of learning that were described—knowledge about: (1) the situation and the illness (including what to expect), (2) how to provide care, and (3) how to access help. Learning gaps, preferences, and potential inequities were identified. Further, in some instances, participant talk about “learning” appears to reflect a meaning-making process that helps them accept their situation, as suggested by the phrase “I have had to learn.”

Findings can inform the development of individualized educational programs and interventions for family caregivers.

To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them.

We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods.

Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support from professionals in the care setting. Family members would also like professionals to better assist them during and after the dying process.

Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.

Depression is a serious issue for cancer patients, resulting in impaired quality of life and probably shorter survival. However, many cancer patients with depression are not treated because of the difficulties in identifying depression within this population. Our study aimed to examine caregivers' perceptions of depression among advanced cancer patients.

This qualitative study employed semistructured interviews, and we analyzed data using grounded theory and qualitative methods. We recruited caregivers from our palliative care unit (PCU) at an academic medical center.

We interviewed a total of 15 caregivers. Cancer patients' caregivers had a good theoretical knowledge of depression but also acknowledged that, in the context of cancer and because of their relationship with the patient, identification of depressive symptoms could be challenging. They considered themselves as partners in the patient's care with a supportive role. However, by assuming the role of partner in patient care, caregivers exposed themselves to emotional difficulties and an increased need for support and information.

Our results suggest a significant impact of depression in advanced cancer caregivers, and it is therefore crucial that healthcare professionals develop educational programs targeting cancer patients' families as well as specific interventions to minimize the impact of the burden of patient care on caregivers.

Surrogates involved in decisions to limit life-sustaining treatment for a loved one in the intensive care unit (ICU) are at increased risk for adverse psychological outcomes that can last for months to years after the ICU experience. Post-ICU interventions to reduce surrogate distress have not yet been developed. We sought to (1) describe a conceptual framework underlying the beneficial mental health effects of storytelling, and (2) present formative work developing a storytelling intervention to reduce distress for recently bereaved surrogates.

An interdisciplinary team conceived the idea for a storytelling intervention based on evidence from narrative theory that storytelling reduces distress from traumatic events through emotional disclosure, cognitive processing, and social connection. We developed an initial storytelling guide based on this theory and the clinical perspectives of team members. We then conducted a case series with recently bereaved surrogates to iteratively test and modify the guide.

The storytelling guide covered three key domains of the surrogate's experience of the patient's illness and death: antecedents, ICU experience, and aftermath. The facilitator focused on the parts of a story that appeared to generate strong emotions and used nonjudgmental statements to attend to these emotions. Between September 2012 and May 2013, we identified 28 eligible surrogates from a medical ICU and consented 20 for medical record review and recontact; 10 became eligible, of whom 6 consented and completed the storytelling intervention. The single-session storytelling intervention lasted from 40 to 92 minutes. All storytelling participants endorsed the intervention as acceptable, and five of six reported it as helpful.

Surrogate storytelling is an innovative and acceptable post-ICU intervention for recently bereaved surrogates and should be evaluated further.

The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs.

As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match.

Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed.

Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.

Control over place of death is deemed important, not only in providing a “good death,” but also in offering person-centered palliative care. Despite the wish to die at home being endorsed by many, few achieve it. The present study aimed to explore the reasons why this wish is not fulfilled by examining the stories of ten individuals who lost a loved one to cancer.

We adopted a narrative approach, with stories synthesized to create one metastory depicting plot similarities and differences.

Stories were divided into four chapters: (1) the cancer diagnosis, (2) the terminal stage and advancement of death, (3) death itself, and (4) reflections on the whole experience. Additionally, several reasons for cessation of home care were uncovered, including the need to consider children's welfare, exhaustion, and admission of the loved one by professionals due to a medical emergency. Some participants described adverse effects as a result of being unable to continue to support their loved one's wish to remain at home.

Reflections upon the accounts are provided with a discussion around potential clinical implications.

Caregivers of cancer patients are faced with significant demands that can seriously impact their physical and mental health. It is important for healthcare professionals to be aware of caregivers' support needs in order for these to be adequately addressed. Our study develops a German version of the Family Inventory of Needs (FIN) and provides a comprehensive evaluation of its acceptability and psychometric properties.

Cross-sectional data from 308 participants were taken from the baseline assessment of an ongoing prospective study. Retests were completed by 46 participants approximately one week after baseline. Informal caregivers of terminally ill cancer patients were recruited from three hospitals in Vienna. Questionnaires for hope (IHS), traumatic stress (IES–R), and depression and anxiety (HADS) were employed together with the translated FIN to assess concurrent and discriminant validity.

The internal consistency of FIN–Importance had a Cronbach's α of 0.94, and that for FIN–Fulfillment was α = 0.96. Retest reliability for FIN–Importance was r = 0.97, while that for FIN–Fulfillment could not be calculated due to missing responses to this subscale. Concurrent and discriminant validity tests for the scale and the discriminative power of items were adequate. However, missing responses may limit the feasibility of using this scale in research settings. We identified six questions that could be excluded from the scale in order to increase its acceptability and further improve its psychometric properties.

Our results suggest that the FIN is suitable for clinical settings. For use in research, we suggest four adaptations to increase the scale's acceptability and psychometric properties. The FIN can be a valuable tool for informing the emotional, physical, and psychological support provided to family carers of people who are terminally ill with cancer.

Increasingly, family or friends are providing care to those with cancer. However, the majority of those assuming the caring role have no prior knowledge related to the provision of care. The present study aimed to explore the experiences of informal carers with respect to their role, thus determining ways that services may support transition to this role.

In order to obtain an in-depth view of such experience, a qualitative meta-synthesis was employed to review the findings of 17 studies.

Out of this synthesis, three main concepts were developed: (1) identity and adopting the caring role, (2) the perception of care tasks, and (3) relationship dynamic changes as a result of caring.

The implications for professional practice are discussed.

Of the few studies that have paid attention to feelings of reward in family palliative caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify the factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward experienced by family palliative caregivers.

Our study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS). This questionnaire included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards.

The results demonstrated that the more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship with the patient felt less rewarded by caregiving.

It seems reasonable that feeling rewarded can be a significant contributor to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and such covariant factors as preparedness, anxiety, hope, and being in a spousal relationship with the patient to influence this experience.

Our aim was to evaluate interrater reliability for the diagnosis of pediatric delirium by child psychiatrists.

Critically ill patients (N = 17), 0–21 years old, including 7 infants, 5 children with developmental delay, and 7 intubated children, were assessed for delirium using the Diagnostic and Statistical Manual–IV (DSM–IV) (comparable to DSM–V) criteria. Delirium assessments were completed by two psychiatrists, each blinded to the other's diagnosis, and interrater reliability was measured using Cohen's κ coefficient along with its 95% confidence interval.

Interrater reliability for the psychiatric assessment was high (Cohen's κ = 0.94, CI [0.83, 1.00]). Delirium diagnosis showed excellent interrater reliability regardless of age, developmental delay, or intubation status (Cohen's κ range 0.81–1.00).

In our study cohort, the psychiatric interview and exam, long considered the “gold standard” in the diagnosis of delirium, was highly reliable, even in extremely young, critically ill, and developmentally delayed children. A developmental approach to diagnosing delirium in this challenging population is recommended.

To assess hopelessness, anxiety, depression, and quality of life in cancer patients undergoing palliative treatment by comparing their scores at the onset of treatment and one month later and by assessing possible correlations with coping strategies.

Participants included 85 patients of both genders (56.5% female) diagnosed with advanced cancer who did not have curative therapeutic options who were assessed with self-applied instruments (the Beck Hopelessness Scale, the European Organization for the Research and Treatment of Cancer Quality of Life Core Questionnaire–Cancer 30, the Hospital Anxiety and Depression Scale, and the Coping Strategies Inventory by Folkman and Lazarus) at two timepoints: first before their appointment with doctors and other professionals in their first visit to the palliative care outpatient clinic (PCOC) and then as soon as patients arrived at the PCOC for their first medical follow-up visit (approximately 30 days after the first appointment).

The scores for hopelessness, anxiety, and depression remained stable (p = 0.24). The results were the same for the quality-of-life (QoL) variables, except for the fatigue and pain scores, which decreased (p = 0.01), and social impairment, which increased (p = 0.03). Analysis of the correlations between the coping mechanisms used after the onset of palliative treatment showed that confronting coping, seeking social support, and positive reappraisal were inversely correlated with hopelessness. Seeking social support, planful problem solving, and positive reappraisal were inversely correlated with indicators of depression. In contrast, use of the escape–avoidance strategy and reduced use of the planful problem-solving strategy were associated with increased anxiety.

The employment of problem-focused coping strategies exerted a positive impact on the end-of-life process and, above all, protected patients from the negative experiences associated with psychiatric symptoms, thus enabling them to look for alternative solutions for experiencing the end-of-life process in a more well-adjusted manner.

The current study explores the relationship between attachment styles, social support, gender and finding meaning in caregiving among spousal caregivers of colorectal cancer patients.

Sixty caregivers (30 men and 30 women) were administered questionnaires assessing attachment styles, social support and finding meaning in caregiving, using a cross-sectional design.

For male caregivers avoidance attachment is associated with their finding meaning, whereas for female caregivers social support is associated with their finding meaning.

Psychological interventions for caregivers should take into consideration gender differences and might benefit from addressing the process of finding meaning in caregiving.

National guidelines in the United Kingdom recommend training Clinical Nurse Specialists in psychological skills to improve the assessment and intervention with psychological problems experienced by people with a cancer diagnosis (National Institute for Health and Clinical Excellence, 2004). This pilot study evaluated a three-day training program combined with supervision sessions from Clinical Psychologists that focused on developing skills in psychological assessment and intervention for common problems experienced by people with cancer.

Questionnaires were developed to measure participants’ levels of confidence in 15 competencies of psychological skills. Participants completed these prior to the program and on completion of the program. Summative evaluation was undertaken and results were compared. In addition, a focus group interview provided qualitative data of participants’ experiences of the structure, process, and outcomes of the program.

Following the program, participants rated their confidence in psychological assessment and skills associated with providing psychological support as having increased in all areas. This included improved knowledge of psychological theories, skills in assessment and intervention and accessing and using supervision appropriately. The largest increase was in providing psycho-education to support the coping strategies of patients and carers. Thematic analysis of interview data identified two main themes including learning experiences and program enhancements. The significance of the clinical supervision sessions as key learning opportunities, achieved through the development of a community of practice, emerged.

Although this pilot study has limitations, the results suggest that a combined teaching and supervision program is effective in improving Clinical Nurse Specialists’ confidence level in specific psychological skills. Participants’ experiences highlighted suggestions for refinement and development of the program. Opportunities for further research and developments in this area are discussed.

The aim was to investigate the effects of an intervention that applies a palliative care approach in residential care upon nurse assistants' level of strain, job satisfaction, and view of leadership.

A quasi-experimental, pretest and posttest design was used. Study circles with workshops involving nurse assistants (n = 75) and their superiors (n = 9) focusing on emotional and existential issues in palliative care were evaluated using a questionnaire answered by the nurse assistants at baseline (November 2009), post-intervention (May 2010), and six-month follow-up (November 2010) in comparison with controls (n = 110).

Directly after the intervention, the job satisfaction of the nurse assistants decreased and they perceived the leadership more negatively than before the intervention. Six months later, strain as a result of criticism from residents and their superiors and having difficulty in balancing emotional involvement had decreased.

The intervention initially seemed to decrease the well-being of the nurse assistants, which could be the result of their increased awareness of the residents' and relatives' needs, in combination with limited support. More emphasis should be placed on the role of leadership when implementing changes in practice.

In Canada, friends and family members are becoming increasingly responsible for providing palliative care in the home. This is resulting in some caregivers experiencing high levels of stress and burden that may ultimately surpass their ability to cope. Recent palliative care research has demonstrated the potential for caregiver resilience within such contexts. This research, however, is primarily focused on exploring individual-level factors that contribute to resilience, minimizing the inherent complexity of this concept, and how it is simultaneously influenced by one's social context. Therefore, our study aims to identify socio-environmental factors that contribute to palliative family caregiver resilience in the Canadian homecare context.

Drawing on ethnographic fieldnotes and semistructured interviews with family caregivers, care recipients, and homecare nurses, this secondary analysis employs an intersectionality lens and qualitative case study approach to identify socio-environmental factors that facilitate family caregivers' capacity for resilience. Following a case study methodology, two cases are purposely selected for analysis.

Findings demonstrate that family caregiver resilience is influenced not only by individual-level factors but also by the social environment, which sets the lived context from which caregiving roles are experienced. Thematic findings of the two case studies revealed six socio-environmental factors that play a role in shaping resilience: access to social networks, education/knowledge/awareness, employment status, housing status, geographic location, and life-course stage.

Findings contribute to existing research on caregiver resilience by empirically demonstrating the role of socio-environmental factors in caregiving experiences. Furthermore, utilizing an intersectional approach, these findings build on existing notions that resilience is a multidimensional and complex process influenced by numerous related variables that intersect to create either positive or negative experiences. The implications of the results for optimizing best homecare nursing practice are discussed.

This study examined the prevalence of clinically significant anxiety among informal hospice caregivers and identified the characteristics of caregivers who experienced anxiety of this severity.

An exploratory secondary data analysis pooled from three separate studies of informal hospice caregivers (N = 433) was conducted. Researchers employed descriptive statistics to calculate anxiety prevalence and utilized logistic regression to model the associations between the covariates (i.e., caregiver characteristics) and anxiety.

Overall, 31% of informal hospice caregivers reported moderate or higher levels of anxiety. Caregivers associated with the research site in the Northwest were less likely to be anxious than those in the Southeast [χ2(3, N = 433) = 7.07, p = 0.029], and employed caregivers were less likely to be anxious than unemployed caregivers (OR = 0.56, 95% CI = 0.33, 0.96). The likelihood of being anxious decreased with increasing physical quality of life (OR = 0.77, 95% CI = 0.69, 0.85), and younger female caregivers were more likely to be anxious than male caregivers and older females (OR = 0.95, CI = 0.91, 0.99).

A noteworthy number of informal hospice caregivers experience clinically significant levels of anxiety. Increased efforts to screen and address anxiety in this population are recommended.

We investigated the prevalence of sleep disturbance and psychological distress in lung cancer patients. We also examined the association between sleep disturbance and psychological distress, pain, fatigue, and quality of life in the same population.

Fifty lung cancer patients were evaluated. Sleep disturbance was assessed using the Athens Sleep Insomnia Scale (AIS) and psychological distress using the Hospital Anxiety and Depression Scale (HADS). Quality of life (QOL), pain, and fatigue were assessed employing the European Organization of Research and Treatment Quality of Life Questionnaire–Cancer 30 (EORTC QLQ–C30).

We observed that 56% of lung cancer patients had sleep disturbance (AIS score ≥6) and 60% had psychological distress (total HADS score ≥11). Patients with sleep disturbance had a HADS score of 14.6 ± 5.8, a fatigue score of 45.3 ± 22.0, and a pain score of 27.2 ± 26.2. In contrast, patients without sleep disturbance had a lower HADS score of 9.9 ± 8.1 (p < 0.05) and a higher fatigue score of 28.5 ± 18.0 (p < 0.01) and a pain score of 8.7 ± 15.8 (p < 0.01). In addition, we found a lower QOL in patients with sleep disturbance (46.3 ± 20.2) than in those without (65.2 ± 20.7) (p < 0.05). We also observed a significant correlation between the AIS, HADS, fatigue, QOL, and pain scores.

Lung cancer patients suffered from combined symptoms related to sleep. Sleeping pills improved sleep induction but were not sufficient to provide sleep quality and prevent daytime dysfunction. Daytime dysfunction was specifically associated with psychological distress. Additionally, the type of sleep disturbance was related to other patient factors, including whether or not they received chemotherapy.

Considering two advanced illnesses, cancer and end-stage dementia, the aim of this study was to describe the symptoms of caregiver psychological distress and burden.

In this cross-sectional study, regression analyses were calculated to explain the influence of psychological distress in caregiver burden. A t test was employed to compare differences between the symptoms of caregiver burden.

The percentage of psychological distress was similar between caregivers of cancer patients (77.6%) and caregivers of dementia patients (72.4%). In the regression analysis, cancer caregiver distress accounted for 27.9% of the variance in symptoms of burden, while dementia caregiver distress accounted for 24.4% of the variance in symptoms of burden. No significant differences were revealed when comparing caregiver burden symptoms between caregivers of the two advanced illnesses (t = 0.06; p = 0.94).

In end-of-life care for patients with dementia, due to significant levels of caregiver distress and burden symptoms, there is a need to support caregivers in the same way as is done for caregivers of cancer patients.