ABSTRACT
Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experiences of people living with MND? (2) What are people's experiences of services? and (3) Can improvements to care be identified? A qualitative research design was adopted using semi-structured interviews. The topic guide was developed from existing literature. The study was based in three boroughs in London, UK. People living with MND and professionals were drawn from a database at King's College Hospital, and additionally, through 'snowball' sampling. Nine people with MND, five carers/family members and 15 professionals took part in the interviews. These interviews were audio-taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. The analysis was facilitated with the NVIVO computer software package. The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals' attitudes and approaches, and professionals' knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.
Subject(s)
Motor Neuron Disease/psychology , Palliative Care/standards , Patient Acceptance of Health Care , Personal Health Services/standards , Professional-Patient Relations , Quality of Health Care , Sickness Impact Profile , Activities of Daily Living , Adaptation, Psychological , Adult , Aged , Female , Health Services Research , Humans , Interviews as Topic , London , Male , Middle Aged , Motor Neuron Disease/physiopathology , Motor Neuron Disease/therapy , Palliative Care/organization & administration , Patient Satisfaction , Personal Health Services/organization & administration , Qualitative Research , United KingdomABSTRACT
A number of palliative care outcome measures are used to facilitate the provision of palliative care. This short article reports the use of one palliative care outcome measure, the Palliative care Outcome Scale, with people with motor neurone disease (MND) living at home. The outcome measure was generally viewed positively by those involved. However, problems with this scale itself point to the need for a specialized instrument to assess palliative care outcomes for people living with MND.
Subject(s)
Community Health Nursing , Home Care Services , Motor Neuron Disease , Outcome Assessment, Health Care/methods , Palliative Care , Surveys and Questionnaires/standards , Adult , Aged , Aged, 80 and over , Attitude of Health Personnel , Attitude to Health , Community Health Nursing/standards , Feasibility Studies , Female , Home Care Services/standards , Humans , London , Male , Middle Aged , Motor Neuron Disease/nursing , Motor Neuron Disease/psychology , Needs Assessment , Nursing Evaluation Research/methods , Nursing Evaluation Research/standards , Nursing Staff/psychology , Nursing Staff/standards , Outcome Assessment, Health Care/standards , Palliative Care/standards , Patient-Centered Care/standardsABSTRACT
Clinical outcome measures are used in clinical audit to monitor the quality of care provided to patients. As information technology (IT) is increasingly being integrated into the delivery of health care, computerising the use of clinical outcome measures has been proposed. However, little is known about the attitudes of health professionals towards this. Aims to understand professionals' views on adapting one clinical outcome measure--the palliative care outcome scale (POS)--for use on hand-held computers. Concludes that these results reinforce existing research on clinical outcome measures and IT in health care; identify special palliative care issues when considering the use of computerised clinical outcome measures with patients; and highlight the need for further research.
