Book chapters will be unavailable on Saturday 24th August between 8am-12pm BST. This is for essential maintenance which will provide improved performance going forwards. Please accept our apologies for any inconvenience caused.
To send this article to your account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account.
Find out more about sending content to .
To send this article to your Kindle, first ensure email@example.com is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle.
Find out more about sending to your Kindle.
Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.
To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.
Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation
Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.
Significance of the research:
Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.
Caring for a dying family member is known to interfere with sleep, yet little is known about caregiver sleep once the patient is admitted to hospice. The aim of this pilot study was to describe the sleep of partners and other family caregivers of patients in hospice.
The pilot study used a cross-sectional, descriptive, and comparative design. Participants included the primary family caregivers of patients recently admitted to a hospice in Norway. Caregiver sleep during the prior month was measured with the Pittsburgh Sleep Quality Index (PSQI). During the patient's hospice stay, caregiver sleep was measured using wrist actigraphy for four nights and three days.
Twenty family caregivers (12 partners and 8 other relatives) completed the study protocol without difficulty. On the PSQI, most caregivers (n = 13) reported clinically significant sleep problems during the prior month. Once the patient was admitted to hospice, actigraphy indicated that 10 caregivers had clinically significant sleep disruption (≥15% wake after sleep onset) and six averaged <7 hours of sleep per night. Partner caregivers reported more trouble falling asleep, and less sleep medication use, in the prior month than other types of family caregivers. However, once the patient was admitted to hospice, and after adjusting for caregiver age, partner caregivers experienced less sleep disruption than other caregivers.
Significance of results:
Findings demonstrate feasibility of the study protocol and indicate that sleep problems are common for caregivers of dying patients, even after the patient is admitted to hospice. The caregiver's relationship to the patient may be an important factor to consider in future studies.
Relatively little attention has been paid to optimum ways in which community-based care services can support family caregivers in the context of end-of-life care at home. This paper addresses such concerns by focusing on the services provided by domiciliary care workers.
We draw on qualitative formal interviews with 42 family members, 1 patient, and 6 staff, as well as observation sessions and informal interviews with additional family caregivers and staff, to examine the aspects of domiciliary care perceived to be of most value. In particular, we compare and contrast family caregivers' experience of the support provided by generic domiciliary care workers with that of a team of specialist domiciliary care workers.
Our findings show that specialist domiciliary care workers had sufficient time and expertise to meet family caregivers' physical and emotional needs in sensitive, proactive, and family-centered ways, and that these attributes were not so prominent in the services received from generic domiciliary care workers.
Significance of results:
The availability to families of targeted support from an appropriately trained and carefully monitored team of specialist domiciliary care workers, able to operate flexibly and with staff consistency, appears to be an important foundation on which to build greater confidence in the reality of a good death at home.
The aim of this study was to explore the type of relationship and the process of developing these relationships between nurses and patients in palliative care units in Japan. The special contribution that culture makes was examined to better understand the intensity of nurses’ grief after the death of their patient.
Thirteen Japanese registered nurses currently practicing in palliative care units were interviewed between July 2006 to June 2009. Theoretical sampling was utilised and the data were analysed using grounded theory methodology. Constant comparison was undertaken during coding processes until data saturation was achieved.
Significant cultural influences emerged both in the type of relationship nurses formed with patients and in the way they developed relationships. The type of relationship was termed ‘human-to-human’, meaning truly interpersonal. The cultural values of ‘Uchi (inside) and Soto (outside)’ have particular implications for the relationship. Four actions Being open, Trying to understand, Devoting time and energy, and Applying a primary nurse role, were identified as strategies for nurses to develop such relationships. The quality of this deeply committed encounter with patients caused nurses to grieve following patients’ death.
Significance of results:
Culture is a major influence upon the reasons, complexities, and impact that lie behind nurses’ behaviours. Attention is needed to support nurses to sustain a fundamental caring quality in their relationships with patients.
Anxiety often arises in conjunction with dyspnoea in patients with severe COPD. Considering the provoking symptomatology and the high mortality rate for COPD, it is reasonable to believe that these conditions trigger death-related and existential anxiety. Although anxiety causes considerable distress and reduces quality of life, people's experience of anxiety has been studied relatively little. The aim of this study was to explore severely ill COPD patients’ experience of anxiety and their strategies to alleviate anxiety.
This qualitative, in-depth interview study explored perceptions of anxiety and the alleviation strategies that are adopted. Interviews were analyzed using a thematic content analysis approach, involving interpretive coding and identification of themes. People suffering from COPD (stage III or IV) were recruited from a pulmonary outpatient clinic in the west of Sweden. Purposive sampling was used, and thirty-one (31) patients were included.
Most of the patients had experienced anxiety associated with COPD. Analyses revealed three major themes, death anxiety, life anxiety, and counterweights to anxiety. Death anxiety included fear of suffocation, awareness of death, fear of dying and separation anxiety. Life anxiety included fear of living and fear of the future. Counterweights to anxiety concerned coping with suffocation, avoiding strategy, and a sense of joy that defied their vulnerable situation.
Significance of results:
The majority of patients experienced anxiety, which limited their lives. Although the patients experienced both life anxiety and death anxiety, they were able to cope with the situation and find a defiant joy to some extent.
This study investigates an approach based on Kaplan's Attention Restorative Theory (ART) to develop a non-pharmacological intervention to help individuals manage the distressing effects of illness related fatigue. The study aims to: identify activities perceived as being enjoyable by individuals who have moderate to severe fatigue related to advanced illness; determine the core attributes of potentially beneficially interventions; analyse reported ‘enjoyable’ experiences within the ART framework by mapping emergent themes to attributes of attention restoration; and develop the prototype for a self-management intervention tool.
A purposive sample of 25 individuals who experienced moderate to severe fatigue was selected from the local hospice and community. Focused semi-structured interviews probed the questions: What do you enjoying doing? What is it about the activity that you particularly enjoy? Framework analysis was used to manage responses.
Seventy-five ‘enjoyable experiences’ were identified, including artistic pursuits, voluntary work, socialising and learning. These activities were organised into four conceptual themes: Belonging, Expansive, Nurturing and Purposeful. When mapped against attributes of restorative activities specified in ART, there was some congruence and variation. It was clear that the participants expressed a great need to be safe and in a nurturing environment. Some participants placed a high value in and received great joy from contributing to the community; this was not noted in previous ART literature.
Significance of results:
This study has extended Kaplan's insightful work on restorative behaviours by revealing the value that purposeful, engaging and safe activities hold for people who live with fatigue. ART has inspired the research team to develop a self-management intervention tool to guide health care practitioners in promoting a non-pharmacological approach to manage fatigue through exploring, discovering and promoting experiences which engage, excite, nurture and challenge the person. Further research is needed to integrate this approach into clinical practice.
No study systematically has investigated the supportive care needs of general head and neck cancer patients using validated measures. These needs include physical and daily living needs, health system and information needs, patient care and support needs, psychological needs, and sexuality needs. Identifying the unmet needs of head and neck cancer patients is a necessary first step to improving the care we provide to patients seen in our head and neck oncology clinics. It is recommended as the first step in intervention development in the Pan-Canadian Clinical Practice Guideline of the Canadian Partnership Against Cancer (see Howell, 2009). This study aimed to identify: (1) met and unmet supportive care needs of head and neck cancer patients, and (2) variability in needs according to demographics, disease variables, level of distress, and quality-of-life domains.
Participants were recruited from the otolaryngology–head and neck surgery clinics of two university teaching hospitals. Self-administered questionnaires included sociodemographic and medical questions, as well as validated measures such as the Supportive Care Needs Survey–Short Form (SCNS-SF34), the Hospital Anxiety and Depression Scale (HADS), and the Functional Assessment of Cancer Therapy–General (FACT-G) and Head and Neck Module (FACT-H&N) (quality of life measures).
One hundred and twenty-seven patients participated in the survey. 68% of them experienced unmet needs, and 25% revealed a clinically significant distress level on the HADS. The highest unmet needs were psychological (7 of top 10 needs). A multiple linear regression indicated a higher level of overall unmet needs when patients were divorced, had a high level of anxiety (HADS subscale), were in poor physical condition, or had a diminished emotional quality of life (FACT-G subscales).
Significance of results:
The results of this study highlight the overwhelming presence of unmet psychological needs in head and neck cancer patients and underline the importance of implementing interventions to address these areas perceived by patients as important. In line with hospital resource allocation and cost-effectiveness, one may also contemplate screening patients for high levels of anxiety, as well as target patients who are divorced and present low levels of physical well-being, as these patients may have more overall needs to be met.
According to the World Health Organization (WHO), palliative care (PC) should be available to everyone suffering from life-threatening diseases and should be started early on in the illness trajectory. However, PC is often initiated much later and is restricted to cancer patients. There is a need for more knowledge about how early PC can be implemented in clinical practice. The purpose of our study was to document the best evidence on methods for early identification (EI) of palliative trajectories in cancer, chronic heart failure (CHF), and chronic obstructive pulmonary disease (COPD) populations, and to identify preconditions for early integration of general PC in hospitals and outcomes for patients and relatives.
A comprehensive systematic review of methods, preconditions, and outcomes was conducted via an electronic literature search of publications between 2002 and September 2012. A final sample of 44 papers was reviewed in detail.
Our study identified disease-specific and general methods for EI of patients who might benefit from PC. Prognostication of end-stage disease based on (holistic) clinical judgment, prognostic factors, and/or care needs are the most frequently recommended methods. A number of interacting disease-, staff-, user-, and organization-specific barriers need to be overcome in order to implement early integration of PC in clinical practice. Early integration of PC may lead to better symptom management, prolonged survival, and better quality of life.
Significance of Results:
No methods can be recommended for routine clinical practice without further validation. There is an urgent need to develop and evaluate methods based on the holistic assessment of symptoms or needs. The barriers to early integration of PC are most extensive with regard to CHF and COPD. Professional training and education are recommended to facilitate early implementation of PC. The evidence about outcome is sparse and mostly relates to cancer populations receiving specialized PC.
Opioids are the mainstay of treatment for moderate to severe cancer pain. The variations in average monthly cost can make it difficult for most patients to procure them without adequate insurance coverage. There are increasing numbers of denials of payment and statements made by insurance agents and other sources regarding inappropriate opioid use, resulting in severe pain and emotional distress for cancer patients and their families. This case series describes five events where the insurer was a major barrier to opioid access.