Patients

Our objective was to develop a validated questionnaire that can measure the extent to which dimensions of caring affect the health of carers of patients with motor neuron disease. An initial 190-item questionnaire was developed from in-depth interviews, focus groups and two pilot studies with carers. Factor analysis was applied to the data obtained from a large survey in the UK that identified the underlying dimensions of caring. The newly formed scales were tested for reliability using Cronbach's α, and for construct validity.

To identify and evaluate the reliability and quality of educational materials provided to individuals with schizophrenia and their carers. Materials used by mental health professionals working in community and in-patient settings were collated. Two independent raters used the ‘Discern’ questionnaire to assess the publications.

Purpose: The purpose of this paper is to explore the attitude and understanding of research among people with Huntington's disease (HD) and their carers, as well as their experiences of research participation. Design/methodology/approach: Semi-structured interviews were conducted with 12 participants with HD (ranging from pre-symptomatic to moderately severe HD) and ten carers.

Objective: To explore the causes of preventable drug-related admissions (PDRAs) to hospital.

Design: Qualitative case studies using semi-structured interviews and medical record review; data analysed using a framework derived from Reason’s model of organisational accidents and cascade analysis.

Social workers have made a significant contribution to the development and delivery of palliative care. Both palliative care and social work are rapidly evolving but, given their changing contexts and increasing workloads, can they sustain compatibility? Advances in treatment of life-threatening illness mean that people live longer in a period of palliative care.

Background: This study is the first to explore how rumination or recurrent dwelling may contribute to psychological distress in palliative care.

The grim prognosis that accompanies a diagnosis of a malignant glioma affects quality of life (QOL) as patients attempt to adapt to overwhelming losses. Caregivers also experience negative changes in QOL as responsibilities grow. This pilot study measured the QOL of patients with malignant gliomas prior to tumor progression and the QOL of their caregivers. It examined negative and positive factors that impacted the QOL while highlighting positive factors often overlooked in brain tumor QOL research. Standardized QOL questionnaires and focus groups were utilized.

Background: The aim of this study was to develop a tool to measure the family's difficulties in caring for cancer patients at the end of life at home: Family's Difficulty Scale in end-of-life home care (FDS).

Methods: The draft of the FDS was derived from a pilot interview survey and literature reviews. The questionnaires were sent to 395 bereaved family caregivers whose family members were patients with terminal cancer receiving home service.

The life of close relatives of persons with bipolar disorder (BD) is associated with emotional distress, depression, and a high level of use of mental health care. Illness-related changes of their life situation endanger relationships, social life, finances, and occupational functioning. Understanding of facilitating conditions for close relatives is still a neglected research area. The aim of the present study thus was to explore what makes the life of close relatives of persons with BD more liveable. A lifeworld phenomenological approach was used.