The Lived Experiences of Hospice Healthcare Workers Caring for Adolescents and Young Adults With Advanced Cancer: An Interpretative Phenomenological Analysis.

To understand the lived experience of healthcare workers who provide palliative care to adolescents and young adults living with advanced cancer. Interpretative phenomenological analysis was the design of this study. Hospice healthcare workers from four pediatric hospices across Canada were recruited through purposive sampling.

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.

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.

'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.

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.

A comparison between thoracic epidural analgesia and rectus sheath catheter analgesia after open midline major abdominal surgery: randomized clinical trial.

Background: Rectus sheath catheter analgesia (RSCA) and thoracic epidural analgesia (TEA) are both used for analgesia following laparotomy. The aim was to compare the analgesic effectiveness of RSCA with TEA after laparotomy for elective colorectal and urological surgery.

Methods: Patients undergoing elective midline laparotomy were randomized in a non-blinded fashion to receive RSCA or TEA for postoperative analgesia at a single UK teaching hospital.

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.

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.

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.

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).

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.

A philosophical critique of the UK's National Institute for Health and Care Excellence guideline 'Palliative care for adults: strong opioids for pain relief'.

The National Institute for Health and Care Excellence (NICE) promotes evidence-based medicine throughout contemporary health care. Its guidelines are employed in the United Kingdom and elsewhere, influencing the type and quality of health care provided. NICE considers a range of evidence in the process of creating guidelines; however, the research accepted as evidence greatly relies on positivist methodologies.

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.

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.

'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.

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.

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.

Unpacking the impact of older adults' home death on family care-givers' experiences of home.

Public Health England (2013) survey data indicates that while the place of death is geographically uneven across England, given a choice, many older people nearing end of life would prefer to die at home. There is, however, a growing critique that policies designed to support home death fail to understand the needs and preferences of older people and the impact on family carers. Such policies also make assumption about within whose home the home death takes place.

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.

Dying at home: a qualitative study of family carers' views of support provided by GPs community staff.

Background: Dying at home is the preference of many patients with life-limiting illness. This is often not achieved and a key factor is the availability of willing and able family carers.

Aim: To elicit family carers' views about the community support that made death at home possible.

Thoracic Epidural analgesia versus Rectus Sheath Catheters for open midline incisions in major abdominal surgery within an enhanced recovery programme (TERSC): study protocol for a randomised controlled trial.

Background: Thoracic epidural analgesia (TEA) is recommended for post-operative pain relief in patients undergoing major abdominal surgery via a midline incision. However, the effectiveness of TEA is variable with high failure rates reported post-operatively. Common side effects such as low blood pressure and motor block can reduce mobility and hinder recovery, and a number of rare but serious complications can also occur following their use.

Managing end of life medications at home--accounts of bereaved family carers: a qualitative interview study.

Objective: To explore how bereaved family members recall managing end of life medications when delivering care to a patient dying at home in England.

Design: Qualitative study.

Setting: Domestic homes in two contrasting areas in England.

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.

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.

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.