Parents' experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis.

BACKGROUND: Parental involvement in the decision-making processes about medical treatment for children with life-limiting conditions is recognised as good practice. Previous research highlighted factors affecting the decision-making process, but little is known about how parents experience their participation. AIM: To explore how parents experience their participation in the process of decision-making about treatment and future care for their children with life-limiting conditions. DESIGN: A systematically constructed review using narrative synthesis. The PRISMA guidelines were followed to report the findings. Databases Medline, EMBASE, SCOPUS, CINAHL and PsycINFO were searched up to December 2023. The study protocol was registered at PROSPERO (RN CRD42021215863). RESULTS: From the initial 2512 citations identified, 28 papers met the inclusion criteria and were included in the review. A wide range of medical decisions was identified; stopping general or life-sustaining treatment was most frequent. Narrative synthesis revealed six themes: (1) Temporal aspects affecting the experience with decision-making; (2) Losing control of the situation; (3) Transferring the power to decide to doctors; (4) To be a 'good' parent and protect the child; (5) The emotional state of parents and (6) Sources of support to alleviate the parental experience. CONCLUSIONS: Parental experiences with decision-making are complex and multifactorial. Parents' ability to effectively participate in the process is limited, as they are not empowered to do so and the circumstances in which the decisions are taking place are challenging. Healthcare professionals need to support parental involvement in an effective way instead of just formally asking them to participate.

Predictors of Improvement in Parental Stress After the First Three Months at Home with a Medically Fragile Infant.

OBJECTIVES: Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2). METHODS: Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012-2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2. RESULTS: On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child's medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss. CONCLUSIONS FOR PRACTICE: The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.

What is already known about the topic? Stress in parents of sick infants is well-documented in the post-birth hospitalization period. Early management of parent stress after a child is born with a life-limiting/life-threatening condition is critical in promoting healthy infant attachment and development.What this study adds? Parents of medically fragile infants experience notable stress during the initial months at home. Pre-hospital discharge attention to medical and psychosocial characteristics of infants and parents may help health care teams anticipate post-discharge parenting challenges and facilitate personalized home support strategies aimed at minimizing parent stress and poor parent­child outcomes.

A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings.

BACKGROUND: Individuals with palliative care needs face increased risk of discontinuity of care as they navigate between healthcare settings, locations and practitioners which can result in poor outcomes. Little is known about interactions that occur between specialist and generalist palliative care teams as patients are transition from hospital to community-based care after hospitalisation. AIM: To understand what happens between inpatient specialist palliative care teams and the generalist teams who provide post-discharge palliative care for shared patients. DESIGN: A constructivist grounded theory approach, using semi-structured interviews and constant comparative analysis, including coding, memo-writing and diagram construction. SETTINGS/PARTICIPANTS: Interviews (n = 21) with specialist palliative care clinicians and clinicians in other specialties providing generalist palliative care. Specialists had training in palliative care and worked in specialty palliative care practices; other clinicians worked in primary care or oncology and did not have specialised palliative care training. RESULTS: A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings was constructed. Two states of inter-team functioning were found which related to how teams perceived themselves: separate teams or one cross-boundary team. Three conditions influenced these two states of inter-team functioning: knowing the other team; communicating intentionally; and acknowledging and valuing the role of the other team. CONCLUSIONS: Teams need to explicitly consider and agree their mode of functioning, and enact changes to enhance knowledge of the team, intentional communication and valuing other teams' contributions. Future research is needed to test or expand this theory across a range of cultures and contexts.

'Thank goodness you're here'. Exploring the impact on patients, family carers and staff of enhanced 7-day specialist palliative care services: A mixed methods study.

BACKGROUND: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. AIM: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. DESIGN: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. SETTING/PARTICIPANTS: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). RESULTS: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). CONCLUSIONS: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff.

Women's experiences of advanced breast cancer in a resource-limited Arab context: A Stakian multi-case study.

OBJECTIVE: Breast cancer is the most common cancer for women, globally. Women are more likely to present with more advanced cancer and palliative care needs in low-resource contexts. There is limited research on Arab, Muslim and African women's experiences of advanced breast cancer. The aim of this study was to explore and understand the experiences of advanced breast cancer in the Islamic Republic of Mauritania. METHODS: Using a constructivist Stakian multi-case study approach, eight cases were constructed with women with advanced breast cancer (n = 8), family members (n = 10) and health professionals (n = 9). Data were collected longitudinally (up to nine months per case) and included semi-structured interviews and audio-journals. Data from 58 interviews and 31 journal entries were thematically analysed. RESULTS: Three key themes were identified: 1. Destiny: Maure women appreciate that Allah is all powerful and maintains control over their destinies and their breast cancer. 2. Patience & Acceptance: a fear of causing offence to Allah influences how women express their experiences of breast cancer and its treatments. 3. Journeying in search of a cure: Maure women have limitled access to information around their cancer and its treatments. Women use their own observations and interpretations to understand their breast cancer and guide their pursuit of treatment and a cure. CONCLUSION: Maure women feel reassured that life and cure remain possible because of Allah's sustenance; but are aware that the gift of life is fragile. They experience restricted power over how they express negative experiences, access to information, and healthcare decisions.

Exploring the experience of recurrence with advanced cancer for people who perceived themselves to be cancer free: a grounded theory study.

PURPOSE: Advances in cancer treatment have led to longer cancer-free periods and overall survival. This study aimed to understand patients' experiences of transitioning out of a state of believing to be cancer free into incurable recurrence with advanced disease. METHODS: Using constructivist grounded theory with in-depth interviews patients (n = 15) with solid tumors from a major US cancer center participated. Theoretical sampling enabled concepts to be developed until theme saturation. Constant comparative analysis used initial and focused coding to develop themes and concepts to describe this specific period from extended time cancer free and transition to advanced incurable disease. RESULTS: Three interrelated concepts were identified: reluctant acceptance, seeking survival through continuous treatment, and hope in the face of an uncertain future. A conceptual model of the experience was developed encompassing anger and sadness, at initial recurrence, to reluctant acceptance, and, finally, a cycle of seeking continuous treatment to prolong life leading to a sense of hope in the face of an uncertain future. CONCLUSION: The cycle between treatment and hope creates a state of personal equilibrium, which provides insights into the importance of treatment for this population. This study provides direction for future research to understand the expectations of people experiencing advanced cancer recurrence. IMPLICATIONS FOR CANCER SURVIVORS: Many cancer survivors live with advanced cancer. Assessing their needs as they transition from survivor with no disease to survivor with advanced disease requires a new conceptualization of the experience which recognizes expectations and priorities for care of this patient group.

Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK.

RATIONALE: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. METHODS: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. FINDINGS: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). IMPLICATIONS: The implications for end-of-life care and mortality research are discussed.

The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review.

BACKGROUND: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. AIM: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. DESIGN: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). DATA SOURCES: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. RESULTS: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom (n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support). CONCLUSION: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.

Activity and advanced cancer: A grounded theory.

BACKGROUND: Cancer-related fatigue and loss of physical functioning are distressing symptoms which negatively impact the quality of life of people with advanced cancer. Physical activity has been shown to have positive effects on these symptoms in early-stage cancer, but previous research demonstrated an incongruence between people with advanced cancer's expressed interest and actual participation in a physical activity intervention. AIM: To gain an in-depth understanding of the experience of activity and quality of life in people with advanced cancer, using a classic grounded theory approach. DESIGN: Through the post-positivist lens of subtle realism, and informed by classic grounded theory methods, a two-phase, cross-sectional, qualitative study was conducted. For 7 days duration, participants wore an activPAL™ activity monitor and completed a daily record sheet, which were then used as qualitative probes for face-to-face, semi-structured interviews. SETTING/PARTICIPANTS: A total of 15 people with advanced cancer, aged 18 years or older, and with a median survival of 100 days from time of study consent, were recruited from an outpatient department of a tertiary cancer centre in Alberta, Canada. FINDINGS: Maintaining their responsibilities, no matter how small, was the prime motive for participants' behaviour. For people with advanced cancer, the minimum level of responsibility was dynamic and unique. It was achieved through a multifaceted interaction between the perceived benefits, prevailing conditions and mechanisms. CONCLUSION: This grounded theory enables understanding of activity as a mechanism through which responsibility is managed and may inform future behavioural interventions in people with advanced cancer.

Silence as an element of care: A meta-ethnographic review of professional caregivers' experience in clinical and pastoral settings.

BACKGROUND: In interactions between professional caregivers, patients and family members at the end of life, silence often becomes more prevalent. Silence is acknowledged as integral to interpersonal communication and compassionate care but is also noted as a complex and ambiguous phenomenon. This review seeks interdisciplinary experience to deepen understanding of qualities of silence as an element of care. AIM: To search for published papers which describe professional caregivers' experience of silence as an element of care, in palliative and other clinical, spiritual and pastoral care settings and to synthesise their findings. DESIGN: Meta-ethnography: employing a systematic search strategy and line-of-argument synthesis. DATA SOURCES: PsycINFO and seven other cross-disciplinary databases, supplemented by hand-search, review of reference lists and citation tracking. No date range was imposed. Inclusion criteria focused on reported experience of silence in professional caregiving. Selected papers ( n = 18) were appraised; none were rejected on grounds of quality. RESULTS: International, interdisciplinary research and opinion endorses the value of silence in clinical care. As a multi-functional element of interpersonal relationships, silence operates in partnership with speech to support therapeutic communication. As a caregiving practice, silence is perceived as particularly relevant in spiritual and existential dimensions of care when words may fail. CONCLUSION: Experience of silence as an element of care was found in palliative and spiritual care, psychotherapy and counselling supporting existing recognition of the value of silence as a skill and practice. Because silence can present challenges for caregivers, greater understanding may offer benefits for clinical practice.

Family carers' experiences of coping with the deaths of adults in home settings: A narrative analysis of carers' relevant background worries.

BACKGROUND: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. AIM: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. DESIGN: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers ( n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants' interview transcripts ( n = 30) where narrative analysis was undertaken. SETTING/PARTICIPANTS: Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants ( n = 30) was purposively selected from the parent sample with reference to carers' age, relationship to the patient, family circumstances and study sites. RESULTS: Evidence is provided on the importance of what we conceptualise as carers' 'relevant background worries'; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. CONCLUSION: It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries.

'Powerlessness' or 'doing the right thing' - Moral distress among nursing home staff caring for residents at the end of life: An interpretive descriptive study.

BACKGROUND: Caring for dying people can contribute to moral distress experienced by healthcare professionals. Moral distress can occur when this caring is restricted by organisational processes, resources or the provision of futile care. These factors apply to end of life care in nursing homes but research is lacking. AIM: To describe how nursing home staff experience moral distress when caring for residents during and at the end of life. METHODS: An interpretive descriptive design, using the critical incident technique in semi-structured interviews to collect data from nursing home staff. Data were analysed using a thematic analysis approach. SETTING: Four nursing homes in one large metropolitan area. PARTICIPANTS: A total of 16 staff: 2 nurse managers, 4 nurses and 10 care assistants. FINDINGS: Participants described holding 'good dying' values which influenced their practice. The four practice-orientated themes of advocating, caring, communicating and relating with residents were found to influence interactions with residents, relatives, general practitioners, and colleagues. These led staff to be able to 'do the right thing' or to experience 'powerlessness', which could in turn lead to staff perceiving a 'bad death' for residents. CONCLUSION: When there are incongruent values concerning care between staff and others involved in the care of residents, staff feel powerless to 'do the right thing' and unable to influence care decisions in order to avoid a 'bad death'. This powerlessness is the nature of their moral distress.

Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review.

BACKGROUND: The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care. AIM: To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care. DESIGN: A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE. DATA SOURCES: Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting. RESULTS: A total of 30 empirical studies (1997-2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of terms for describing the method were observed, for example, concerning the understanding of a 'round' or a 'modified Delphi study'. CONCLUSION: Substantial variation was found concerning the quality of the study conduct and the transparency of reporting of Delphi studies used for the development of best practice guidance in palliative care. Since credibility of the resulting recommendations depends on the rigorous use of the Delphi technique, there is a need for consistency and quality both in the conduct and reporting of studies. To allow a critical appraisal of the methodology and the resulting guidance, a reporting standard for Conducting and REporting of DElphi Studies (CREDES) is proposed.

Caring for a dying spouse at the end of life: 'It's one of the things you volunteer for when you get married': a qualitative study of the oldest carers' experiences.

BACKGROUND: older people aged 80 and over are increasingly providing end-of-life care to spouses at home and often do so for long periods of time, while also trying to manage their own illnesses and disabilities. Little of the research on older spousal carers has focussed on the oldest carers; hence, the needs of this particular population are not fully known. OBJECTIVE: to explore the experiences of the 'oldest carers' in caring for a dying spouse at home. METHODS: secondary analysis was undertaken on a subset of data from a larger qualitative interview study; this dataset comprised 17 interviews from participants aged 80 or over. Framework analysis methods were used, with items derived from the thematic analysis of the main study. RESULTS: the oldest carers in this subset demonstrated high levels of resilience and the ability to adapt to their caring role. Caring until death was accepted as an integral part of the commitment made to their partner as part of the 'wedding contract'. Carers felt they benefitted from the support provided by family, friends and care services; however, their own care needs were not always recognised by health and social care services. CONCLUSIONS: these findings underscore the complexity of the oldest carers' experiences and challenges in times of illness and end of life. Healthcare professionals should be alerted to the myriad ways caregiving is enacted in serious illness and seek opportunities for developing supportive interventions specifically for older carers.

Palliative Care Information Needs in Central and Eastern Europe and the Commonwealth of Independent States.

In a cross-national survey, we examined the information needs and barriers to accessing palliative care information in Central and Eastern Europe (CEE) and the Commonwealth of Independent States (CIS). In total, 584 healthcare professionals from 22 countries completed the questionnaire. Information on legislation and official papers (67 percent) and information on education courses in palliative care (65 percent) were the most frequently reported information needs. Major barriers to accessing palliative care information were language and a lack of easily accessible and affordable, clinically relevant information. An informative Web site, an electronic newsletter, and regular meetings or conferences were rated as the most important information channels. We concluded that access to reliable and well-structured information should be facilitated for healthcare professionals in CEE and CIS countries to assist them in their clinical decision making. Most importantly, more in-depth qualitative research and dialogue with stakeholders in the different countries are needed to develop context-specific, tailor-made strategies.

Current debates on end-of-life sedation: an international expert elicitation study.

PURPOSE: End-of-life sedation, though increasingly prevalent and widespread internationally, remains one of the most highly debated medical practices in the context of palliative medicine. This qualitative study aims to elicit and record the perspectives of leading international palliative care experts on current debates. METHODS: Twenty-one professionals from diverse backgrounds, sharing field-specific knowledge/expertise defined by significant scholarly contribution on end-of-life sedation, were recruited. Open-ended, semi-structured interviews, following a topic-oriented structure reflecting on current debates, were conducted. Results were analysed using thematic content analysis. RESULTS: Three main aspects of sedation were identified and discussed as potentially problematic: (a) continuous deep sedation as an extreme facet of end-of-life sedation, (b) psycho-existential suffering as an ambivalent indication for sedation and (c) withdrawal or withholding of artificial nutrition and hydration as potentially life-shortening. On these grounds, concerns were reported over end-of-life sedation being morally equivalent to euthanasia. Considerable emphasis was placed on intentions as the distinguishing factor between end-of-life acts, and protective safeguards were introduced to distance sedation from euthanasia. CONCLUSIONS: This study shows that, despite the safeguards introduced, certain aspects of sedation, including the intentions associated with the practice, are still under question, parallels being drawn between end-of-life sedation and euthanasia. This reaffirms the existence of a grey area surrounding the two practices, already evidenced in countries where euthanasia is legalized. More clarity over the issues that generate this grey area, with their causes being uncovered and eliminated, is imperative to resolve current debates and effectively inform research, policy and practice of end-of-life sedation.

Physician-reported practices on continuous deep sedation until death: A descriptive and comparative study.

BACKGROUND: Research on continuous deep sedation until death has focused on estimating prevalence and describing clinical practice across care settings. However, evidence on sedation practices by physician specialty is scarce. AIMS: To compare and contrast physician-reported practices on continuous deep sedation until death between general practitioners and medical specialists. DESIGN/PARTICIPANTS: A secondary analysis drawing upon data from a large-scale, population-based, retrospective survey among physicians in Flanders, Belgium in 2007. Symptom prevalence and characteristics of sedation (drugs used, artificial nutrition and hydration administered, intentions, and decision-making) were measured. RESULTS: Response rate was 58.4%. The frequency of continuous deep sedation until death among all deaths was 11.3% for general practitioners and 18.4% for medical specialists. General practitioners reported significantly higher rates of severity and mean intensity of pain, delirium, dyspnea, and nausea in the last 24 h of life for sedated patients and a higher number of severe symptoms than medical specialists. No differences were found between groups in the drugs used, except in propofol, reported only by medical specialists (in 15.8% of all cases). Artificial nutrition and hydration was withheld or withdrawn in 97.2% of general practitioner and 36.2% of medical specialist cases. Explicit life-shortening intentions were reported by both groups (for 3%-4% of all cases). Continuous deep sedation until death was initiated without consent or request of either the patient or the family in 27.9% (medical specialists) and 4.7% (general practitioners) of the cases reported. CONCLUSION: Considerable variation, often largely deviating from professional guidelines, was observed in physician-reported performance and decision-making, highlighting the importance of providing clearer guidance on the specific needs of the context in which continuous deep sedation until death is to be performed.

Place of death in the Czech Republic and Slovakia: a population based comparative study using death certificates data.

BACKGROUND: Place of death represents an important indicator for end-of-life care policy making and is related to the quality of life of patients and their families. The aim of the paper is to analyse the place of death in the Czech Republic and Slovakia in 2011. Research questions were focused on factors influencing the place of death and specifically the likelihood of dying at home. METHODS: Whole population data from death certificates for all deaths in the Czech Republic and Slovakia in 2011 were used for bivariate and multivariate analyses. Separate analysis using binary logistic regression was conducted for subpopulation of patients who died from chronic conditions. RESULTS: The majority of population in both countries died in hospitals (58.4% the Czech Republic, 54.8% Slovakia), less than one-third died at home. In case of chronic conditions, death at home was significantly associated with underlying cause of death (cancer and heart failure), being male, age (older than 85, Slovakia only) and higher education (the Czech Republic only). Cancer and heart failure patients had higher chances to die at home than other chronic conditions. CONCLUSIONS: Czech and Slovak patients with chronic conditions are more likely to die in hospitals than in some other European Union member countries. This finding should be addressed by policy makers in promoting home hospice care services and education in palliative care for staff in nursing homes and other end-of-life settings.

The impact of chemotherapy-related nausea on patients' nutritional status, psychological distress and quality of life.

PURPOSE: Nausea is a troublesome and distressing symptom for patients receiving chemotherapy. While vomiting is well controlled with current antiemetics, nausea is a more difficult symptom to manage. The aim of this study was to assess the impact of nausea on nutritional status, quality of life and psychological distress. METHODS: This was a prospective observational study over two cycles of chemotherapy. Patients completed the Multinational Association of Supportive Care in Cancer Antiemesis Tool, a measure of nutritional status (Patient-Generated Subjective Global Assessment), the Functional Assessment of Cancer Therapy-General (FACT-G) quality of life scale and the Hospital Anxiety and Depression Scale at the end of each chemotherapy cycle (around day 10 post-chemotherapy). RESULTS: The sample consisted of 104 patients, primarily female, receiving anthracycline-based chemotherapy. While vomiting was minimal (5.2-14.6 % of the patients), high levels of nausea were observed (55.2-72.9 %), and severe nausea (>6 on a 0-10 scale) was reported by 20.5-29.2 % of the participants. Severe nausea had a borderline significant impact in relation to physical functioning (p = 0.025) and a significant impact on nutritional status (severe acute nausea, p = 0.003; severe delayed nausea, p = 0.017). Clinically meaningful changes were observed in relation to the FACT-G total score. CONCLUSION: Chemotherapy-induced nausea does have an impact on nutritional status and physical functioning and can impair anxiety and quality of life. As a key symptom associated with other symptoms, it is imperative that greater attention is given to managing treatment-related nausea through innovative non-pharmacological and nutritional interventions.

The perspectives of bereaved family carers on dying at home: the study protocol of 'unpacking the home: family carers' reflections on dying at home.

BACKGROUND: Recent end of life care policy prioritises patient choice over place of care and in particular promotes dying at home. This policy is predicated on the assumption that there are family carers able and willing to provide care for the dying person. Through the accounts of bereaved family members, the 'Unpacking the home' study aims to gain an in-depth understanding of 'home' and the issues faced by family members caring for a dying older person at home; it also aims to examine the way the home is transformed in the process of providing end of life care, and offer a critical analysis of policies that aim to increase home deaths. This paper presents the protocol for this study. METHODS/DESIGN: A cross-sectional qualitative study has been designed to achieve the study aims. In-depth interviews will be conducted in the north and south of England with 50 bereaved family carers to elicit their accounts of witnessing the dying in the home of an older person (50+ years). All interviews will be subjected to thematic analysis, and narrative analysis will be undertaken on a subset of 30 interview transcripts. A final phase of integration and policy analysis will be conducted towards the end of the study. User involvement is integral to this study, with service users actively engaged at every stage. DISCUSSION: This study will seek to take a qualitative approach by explicitly recognising that family carers are central to the experience of dying at home for older people, and they have needs that may be amenable to support and anticipatory planning. The strengths of this study, which include its interdisciplinary and participatory approach, and in-depth data collection and analysis methods, will be explored. The limitations and challenges of this research will also be considered. This study seeks to make recommendations that will ensure that family carers receive appropriate and adequate support in caring for their loved ones at the end of life.