Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool.

Objective: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers.

Lymphedema Quality of Life Inventory (LyQLI)-Development and investigation of validity and reliability.

Purpose: The purpose of this study was to reduce the 188-item Swedish Lymphedema Quality of Life Inventory (SLQOLI) to an abbreviated, clinically useful version (phase 1) and to test it for reliability and validity (phase 2).

Methods: In phase 1 correlation analysis, factor analysis, content validity assessment and expert panels were used to reduce the number of items in SLQOLI to 45 items, which was named, Lymphedema Quality of Life Inventory (LyQLI). In phase 2, LyQLI was sent to 200 patients with lymphedema.

Dignity therapy for people with motor neuron disease and their family caregivers: a feasibility study.

Background: There are calls to explore psychological interventions to reduce distress in patients with motor neuron disease (MND) and their family caregivers. Dignity therapy is a short-term psychotherapy intervention shown to alleviate distress for people with life-limiting illnesses.

Objectives: To assess the acceptability, feasibility, and effectiveness of dignity therapy to reduce distress in people with MND and their family caregivers.

A prospective evaluation of Dignity Therapy in advanced cancer patients admitted to palliative care.

Background: Dignity Therapy is a brief, psychosocial intervention for patients with incurable disease.

Aim: To investigate participation in and evaluation of Dignity Therapy and longitudinal changes in patient-rated outcomes.

Design: A prospective (pre/post) evaluation design was employed.

Palliative care needs of terminally ill people living alone: a service provider perspective.

Background: Community-based palliative care services face challenges in meeting the needs of terminally ill clients who live alone without a primary caregiver. Yet, there is a dearth of literature on the perceptions of health service providers (HSPs) regarding the care needs and possible management options to assist this growing group to remain at home.

Objective: This paper investigated the support needs of people living alone with a terminal illness from a service provider perspective.

Responding to a diagnosis of localized prostate cancer: men's experiences of normal distress during the first 3 postdiagnostic months.

Background: Men experience localized prostate cancer (PCa) as aversive and distressing. Little research has studied the distress men experience as a normal response to PCa, or how they manage this distress during the early stages of the illness.

Objectives: The objective of this study was to explore the experience of men diagnosed with localized PCa during their first postdiagnostic year.

Dignity therapy: a feasibility study of elders in long-term care.

Objective: The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly.

Method: Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in Winnipeg, Manitoba. Two groups of participants were identified; residents who were cognitively able to directly take part in dignity therapy, and residents who, because of cognitive impairment, required that family member(s) take part in dignity therapy on their behalf.

Implementation and evaluation of an education program to guide palliative care for people with motor neurone disease.

Background: Despite a recognized need for a palliative approach to caring for people with motor neurone disease (MND), access to palliative care is often limited.

Aim: This project aimed to improve the knowledge of health professionals about a palliative approach to MND care.

Design: A three-phase study was undertaken to develop, implement and evaluate an education program for health professionals that promoted a palliative approach to MND care.

Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial.

Background: Dignity therapy is a unique, individualised, short-term psychotherapy that was developed for patients (and their families) living with life-threatening or life-limiting illness. We investigated whether dignity therapy could mitigate distress or bolster the experience in patients nearing the end of their lives.

Methods: Patients (aged ≥18 years) with a terminal prognosis (life expectancy ≤6 months) who were receiving palliative care in a hospital or community setting (hospice or home) in Canada, USA, and Australia were randomly assigned to dignity therapy, client-centred care, or standard palliative care in a 1:1:1 ratio.

Information needs and preferences of women as they proceed through radiotherapy for breast cancer.

Objective: While radiotherapy is commonly employed in the treatment of breast cancer, many women know little about treatment and experience treatment related anxiety. The aims of this study were to: Prioritise breast cancer patients' radiotherapy related information needs and concerns; determine unmet information needs; ascertain which information sources patients prefer to receive; and explore whether information provision reduces anxiety and depression.

Methods: A longitudinal survey was administered at four time points: after initial consultation with radiation oncologist, after the planning appointment, within first week of treatment and after treatment completion.

The prevalence of anxiety and depression in palliative care patients with cancer in Western Australia and New South Wales.

Objectives: To examine the prevalence and predictors of depression and anxiety in palliative care patients with cancer in Western Australia and New South Wales.

Design, Setting And Participants: A descriptive study of 266 consecutive patients at a range of inpatient and outpatient settings including home care, hospices, and private and tertiary care hospitals in WA and NSW from 1 March to 30 June 2002.

Main Outcome Measures: Self-reported anxiety and depression using the Hospital Anxiety and Depression Scale (HADS) at a cut-off score of > or = 8 on each subscale (depression and anxiety) for possible cases, and of > or = 11 for probable cases; a cut-off score of > or = 19 was used for probable combined depression and anxiety.

Measuring symptom distress in palliative care: psychometric properties of the Symptom Assessment Scale (SAS).

Given the variety of palliative care settings within which symptom distress must be assessed, development of a valid and reliable clinical tool that can be simply applied in every day practice is needed. The Symptom Assessment Scale (SAS) uses a 0-10 numerical scale with zero being no symptom and 10 being the worst possible. The key symptoms included in the scale are breathing, bowel problems, appetite problems, pain, insomnia, nausea and fatigue.

Testing the feasibility of the Dignity Therapy interview: adaptation for the Danish culture.

Background: 'Dignity Therapy' (DT) is a brief, flexible intervention, which allows patients to complete an interview and create a document regarding their life, identity and what they want to leave in writing for their loved ones. DT is based on the DT Question Protocol. Developed and tested in English speaking settings, DT has proven to be a feasible and effective way to enhance patient dignity, while diminishing suffering and depression.

Learning from dying patients during their final days: life reflections gleaned from dignity therapy.

Dignity therapy is a novel therapeutic approach designed to decrease suffering, enhance quality of life and bolster a sense of dignity for patients approaching death. The benefits of dignity therapy were previously documented in a sample of 100 terminally ill patients. One of the products of dignity therapy is a transcript of the edited therapy session(s).

Facilitating needs based cancer care for people with a chronic disease: Evaluation of an intervention using a multi-centre interrupted time series design.

Background: Palliative care should be provided according to the individual needs of the patient, caregiver and family, so that the type and level of care provided, as well as the setting in which it is delivered, are dependent on the complexity and severity of individual needs, rather than prognosis or diagnosis [1]. This paper presents a study designed to assess the feasibility and efficacy of an intervention to assist in the allocation of palliative care resources according to need, within the context of a population of people with advanced cancer.

Methods/design: People with advanced cancer and their caregivers completed bi-monthly telephone interviews over a period of up to 18 months to assess unmet needs, anxiety and depression, quality of life, satisfaction with care and service utilisation.

The landscape of distress in the terminally ill.

Understanding the complexities of distress and knowing who is most vulnerable is foundational to the provision of quality, palliative end-of-life care. Although prior studies have examined the prevalence of symptom distress among patients nearing death, these studies have tended to largely focus on physical and, to a lesser extent, psychological challenges. The aim of this study was to use the Patient Dignity Inventory (PDI), a novel, reliable, and validated measure of end-of-life distress, to describe a broad landscape of distress in patients who are terminally ill.

Emotional care experienced by hospitalised patients: development and testing of a measurement instrument.

Aims And Objectives: This paper describes the development and preliminary psychometric testing of an instrument that evaluates the emotional care experienced by patients during hospitalisation.

Background: Previous qualitative work using the Grounded Theory method identified the characteristics of interpersonal interactions that hospitalised patients perceived to be therapeutic. Three conditions were associated with the patient's experience of emotional comfort: the patient's perceived Level of Security, Level of Knowing and Level of Personal Value.

Professional relationships in palliative care decision making.

Background: Decision making in the context of palliative care is particularly complex given the unpredictable illness trajectories experienced by patients and the number of individuals who may be part of decision-making processes. This study aimed to describe the significant issues that influence the processes of care decision making, from the perspective of patients with advanced illness.

Methods: Patients (14), family members (7) and health professionals (18) were interviewed and field observations (100 h) of decision-making practices were undertaken in two Australian palliative care services.

Undertreatment of nausea and other symptoms in hospitalized cancer patients.

Objective: This survey aimed to provide a symptom profile, in particular for nausea and its treatment, of advanced cancer patients prior to implementation of a clinical practice guideline for nausea.

Materials And Methods: An audit of 82 advanced cancer patients admitted to a major Australian teaching hospital was undertaken. While nausea was present in 26 (32%) of respondents, antiemetics were prescribed in 52 (68%), a higher proportion than in the past, and being taken by 32 (39%).

Developing recommendations for implementing the Australian Pain Society's pain management strategies in residential aged care.

Objective: This study aimed to develop recommendations and a related implementation resource 'toolkit' to facilitate implementation of pain management strategies in Australian Residential Aged Care Facilities (RACFs).

Methods: This qualitative study used written materials, focus groups and individual interviews to gather data from participants. Thirty-four health-care professionals with experience in the aged care sector were recruited from five Western Australian RACFs.

Is it feasible and desirable to collect voluntarily quality and outcome data nationally in palliative oncology care?

Hospice/palliative care is a critical component of cancer care. In Australia, more than 85% of people referred to specialized hospice/palliative care services (SHPCS) have a primary diagnosis of cancer, and 60% of people who die from cancer will be referred to SHPCS. The Palliative Care Outcomes Collaboration (PCOC) is an Australian initiative that allows SHPCS to collect nationally agreed-upon measures to better understand quality, safety, and outcomes of care.

The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care.

Quality palliative care depends on a deep understanding of distress facing patients nearing death. Yet, many aspects of psychosocial, existential and spiritual distress are often overlooked. The aim of this study was to test a novel psychometric--the Patient Dignity Inventory (PDI)--designed to measure various sources of dignity-related distress among patients nearing the end of life.

How do radiation oncology health professionals inform breast cancer patients about the medical and technical aspects of their treatment?

Background And Purpose: Radiation therapy patients need information to make treatment decisions, understand treatment and manage side effects. The purpose of this study was to (1) Identify information about radiation therapy routinely provided to breast cancer patients; (2) Determine which health professionals provide information; (3) Examine whether information is routinely provided at the same time points; and (4) Determine whether health professionals and patients place similar importance on specific information.

Materials And Methods: Health professionals in radiation therapy departments in Australia and New Zealand completed self-administered questionnaires.