ABSTRACT
The feedback of research findings to practitioners and policy makers is an important component of palliative care research. Little is, however, understood about professionals' views on the ways research findings should be fed back. This study used semi-structured telephone interviews with a vignette to understand professionals' views on the feedback of survey research findings within palliative care. Content analysis of data uncovered a range of issues professionals emphasised as important to consider. These issues are discussed within the context of existing literature in order to raise the profile of research feedback within palliative care.
Subject(s)
Feedback , Palliative Care , Research , Interviews as Topic , Models, TheoreticalABSTRACT
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
This article presents findings from a qualitative study concerning drug injectors' constructs of human immunodeficiency virus (HIV) risk behavior. Analysis of data obtained from in-depth interviews (some with a vignette) of drug injectors found that when individuals needed an injection of drugs and were experiencing drug withdrawal they were more likely to take drug injecting risks. This was often discussed within an overall preoccupation with drug use. The substantive focus of the analysis goes on to explore drug injectors' desire to think about the consequences of HIV risk behavior at a later point in time. These exploratory findings highlight how further research needs to be undertaken in order to improve understanding of the temporal issues concerning drug injecting HIV risk behavior.
Subject(s)
HIV Infections/psychology , HIV Infections/transmission , Risk-Taking , Substance Abuse, Intravenous/psychology , Adolescent , Adult , Female , Humans , Injections, Intravenous , Interviews as Topic , Male , Needle Sharing/adverse effects , Needle Sharing/psychology , Prisoners/psychology , Prisoners/statistics & numerical data , 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.
Subject(s)
Attitude of Health Personnel , Attitude to Computers , Computers, Handheld/statistics & numerical data , Medical Audit/methods , Outcome Assessment, Health Care , Palliative Care/standards , England , Female , Humans , Interviews as Topic , London , Palliative Care/methods , Patient SatisfactionSubject(s)
Continuity of Patient Care/organization & administration , Motor Neuron Disease/therapy , Patient Care Team/organization & administration , Patient Participation/methods , Delivery of Health Care/organization & administration , Humans , London , Patient Advocacy , Program Development , Program EvaluationABSTRACT
BACKGROUND: In an era when information technology developments are being harnessed by governments to improve patient care, it is important to consider the issues raised by the use of computers in health care practice and policy. AIM: The aim of this paper is to provide an appraisal of considerations raised by the use of computers in health care. REVIEW FOCUS: Drawing on a range of studies in the social and medical sciences, the paper reviews the considerations. The introduction to the paper maps out the policy context, which is followed by three substantive sections: first, computer hardware and software considerations; second, issues around confidentiality; and third, personal, social and cultural considerations. CONCLUSION: This paper demonstrates that information technology developments must be allied with government or state direction and should be informed by evidence. Whilst the issues discussed are of primary relevance to the United Kingdom National Health Service, they have wider relevance to health care systems internationally.
