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Biomedical subjects

Julia M Addington-Hall

Publications and source records attributed to Julia M Addington-Hall.

14 recordsLinked to original sources
PubMed2005

Patient descriptions of breathlessness in heart failure.

OBJECTIVE: To explore patient experience of breathlessness in heart failure. METHODS: Semi-structured interviews were undertaken with 27 patients with chronic heart failure and were analysed using a constant comparative approach. RESULTS: The patients had a mean age of 69 (range 38-94 years). All had chronic heart failure with a mean left ventricular ejection fraction of 33.1%. The patient narratives suggested three dominant experiences of breathlessness, "everyday", "worsening" and "uncontrollable". These descriptions predominantly focused on physical functioning, relating to patients' ability to manage breathlessness on a day to day basis. Patients were able to accommodate everyday breathlessness, using a number of coping strategies. In most cases this experience of breathlessness came to be accepted as "normal". Worsening breathlessness was a symptom that patients were unable to manage and that prompted a hospital admission, whereas uncontrollable breathlessness was experienced as a symptom that even health care professionals struggled to control. CONCLUSIONS: Patients' descriptions of breathlessness are distinct from medical terminology and more clearly relate to physical adaptations to breathlessness. Further research is required to identify whether heart failure patients' descriptions of breathlessness are different to those of cancer patients, and to establish whether the categories generated from this data set are applicable to other heart failure patients in other settings.

Activities of Daily Living↗
PubMed2005

Feeding back survey research findings within palliative care. Findings from qualitative research.

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.

Feedback↗
PubMed2005

A national survey of health professionals and volunteers working in voluntary hospice services in the UK. I. Attitudes to current issues affecting hospices and palliative care.

This paper reports results from a national survey in 1999 of voluntary hospice services in the UK. It focuses on volunteer and staff views of the purposes of hospice care, and on current debates within palliative care. Twenty-five hospice services, stratified by region, services provided (inpatient care, day care and/or home care) and number of beds were randomly sampled from amongst 175 voluntary hospices in the UK. Nineteen participated. Seventy per cent of a random sample of professional and voluntary staff within these hospices returned a postal questionnaire. Both volunteers and professionals considered care of the whole person, pain and symptom control, quality of life and dying peacefully to be important aspects of hospice care. Most doctors chose care of the whole person as the most important aspect, and they were more likely to choose this option than other staff. Hospice volunteers were less positive than hospice staff (particularly doctors and nurses) in their attitudes to extending hospice care to noncancer patients (where many volunteers held no strong view), to restricting care to patients with specialist palliative care needs, and less negative about euthanasia. These findings illustrate the importance of including hospice volunteers and the general public, as well as hospice staff, in debates about the future of hospice and palliative care in the UK. Further research is needed into lay and professional views of the role of hospices and palliative care services.

Adult↗
PubMed2005

A national survey of health professionals and volunteers working in voluntary hospices in the UK. II. Staff and volunteers' experiences of working in hospices.

In this paper we report findings of a 1999 nationally representative survey of independent hospices in the UK, focusing on hospice staff and volunteers' experiences of working in hospices. Nineteen of 25 sampled services participated, and these differed little in terms of service provision, size and region from the total sample of 175 services. A response rate of 70% for randomly sampled hospice staff and volunteers was achieved (n=504). There were significant intergroup differences (doctors, nurses, nursing auxiliaries, other staff and volunteers) in participants' reported experience of working in the hospice with, for example, doctors being more likely than other groups to feel appreciated and to report receiving adequate support from hospice management. Overall, 31% of respondents wanted more support from management. Half had considered leaving the hospice (65% nurses, 60% other staff, 55% nursing auxiliaries, 40% doctors and 37% volunteers). Nurses who had considered leaving were less satisfied than other nurses with, for example, support from hospice management, and less likely to feel valued by the hospice. These results raise questions about the quality of the relationship between hospice trustees, managers and staff, and about the realities of enhancing multiprofessional teamwork in organizations where there are significant differences between staff groups in perception of, and satisfaction with, the working environment. Voluntary hospice trustees and managers face a difficult task in managing and supporting staff whilst also negotiating relationships with the NHS at a time of rapid change, and ensuring hospices' financial viability. Access to high quality leadership programmes may play an important role in ensuring voluntary hospices are characterized by effective, supportive working relationships.

Adaptation, Physiological↗
PubMed2005

A research study to identify facilitators and barriers to outcome measure implementation.

AIM: To identify facilitators and barriers to implementing outcome measures. METHODS: An action-research approach within a hospice and nursing home was used. Staff took part in semistructured interviews pre- and post-implementation of the Palliative Care Outcome Scale (POS), completed diaries and participated in monthly meetings. FINDINGS: Qualitative content analysis identified barriers to implementation including: a top-down decision-making approach; outcome measures perceived as time-consuming to use; limited resources for data analysis; and a lack of knowledge of the importance of outcome measures. Facilitators to successful implementation include: involving all staff in decisions about implementation; and using a measure that can be adapted to organization needs and clinical practice. The benefits of using the measure are rapidly noticeable. CONCLUSIONS: Given the need to evaluate services and the role outcome measures can have within clinical governance, this article indicates methods by which measures may be more successfully implemented.

Attitude of Health Personnel↗
PubMed2004

It just didn't work: the realities of quality assessment in the English health care context.

AIMS: Assessment of care quality is integral to health and palliative care provision and there is a need to develop and implement outcome measures to assess quality. This study aimed to: (1) describe the implementation of a palliative care outcome measure in non-specialist palliative care settings and (2) to understand the implementation of the measure. METHOD: Twenty-five non-specialist palliative care settings were purposely sampled and invited to implement a palliative care outcome measure. Fifteen settings agreed to take part. The research team provided training and support in the use of the measure. Data were collected on actual use of the measure and, via interviews with patients and nurses, on their experiences. RESULTS: The number of assessments was low (21 patients assessed against an anticipated minimum of 240). The analysis of nurses' accounts identified important considerations in understanding the low response. Although nurses saw the implementation of the outcome measure as bringing opportunities for themselves, including their own professional development, and for the organisations they represent, including raising organisational profiles, there were a number of factors that acted as impediments. These include: perceived time to administer the paperwork; competence and confidence in recruiting patients and proceeding with informed consent; concerns about the effects of completing the measure with very ill patients; and the effects of nurses raising palliative care issues on their relationships with patients. CONCLUSIONS: It is difficult to integrate outcome measures into routine clinical practice. Future interventions should consider how to tailor the implementation of outcome measures within existing working structures and provide education and training to enable nurses to deal with potentially sensitive palliative care issues.

Attitude of Health Personnel↗
PubMed2004

Evaluating palliative care: bereaved family members' evaluations of patients' pain, anxiety and depression.

Palliative care surveys often rely on bereaved family members to act as proxies to provide information on patient care at the end of life, after the patient's death. However, when comparing bereaved family members' assessments with those of the patients, agreement is found to be better for symptoms that are more concrete and observable than subjective aspects such as psychological symptoms and pain. To date, little is known about how proxies actually evaluate these types of symptoms. The present study used retrospective verbal protocol analysis to elucidate the thought processes of 30 bereaved relatives during their evaluations of patients' pain, anxiety and depression. The qualitative analysis raised awareness of the difficulties experienced by proxies when discerning the presence of symptoms. It also provided insights into the cues and strategies used when making decisions, contributing to a fuller understanding of how proxies distinguish symptoms. Recommendations are made to improve the design of retrospective palliative care surveys.

Adult↗
PubMed2004

What methods do stakeholders prefer for feeding back performance data: a qualitative study in palliative care.

OBJECTIVE: To investigate the opinions of stakeholders (service commissioners and providers) on how performance data should be presented, in order to develop effective feedback methods to facilitate the use of these data in decision making. DESIGN: A qualitative analysis of semi-structured face-to-face and telephone interviews. League tables and fictional box plots were presented as an illustrative guide. The themes covered in the interviews were the effectiveness of these two feedback formats, their positive and negative characteristics, and ideas for new and improved feedback mechanisms. PARTICIPANTS: Thirty-six stakeholders representing a range of clinical and non-clinical roles within palliative care and the wider health care system across a variety of statutory and non-statutory organizations from London and the West Midlands. RESULTS: Box plots were received more positively than league tables, and qualitative information was considered more appropriate than pictorial feedback. Conventional methods such as league tables and box plots were judged to lack essential information on which important decisions could be based, such as additional contextual information and the methodological assumptions of the instrument. Both feedback methods were considered useful as an impetus to further discussion. There was a consensus that feedback should be constructive and able to be adapted to the organizational realities in which UK health services function. CONCLUSION: Qualitative research was viewed as the right evidence for gaining an understanding of the quality of end of life care. Stakeholders highlighted the importance of the lay perspective, which requires approaches that illuminate the subjective meanings of patient experience.

Attitude of Health Personnel↗
PubMed2004

Assessing palliative care outcomes for people with motor neurone disease living at home.

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.

Adult↗
PubMed2004

How do proxies' perceptions of patients' pain, anxiety, and depression change during the bereavement period?

The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies' accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. Thirteen bereaved family members were interviewed, at three to five months and seven to nine months after the patient's death, about the patient's pain, anxiety, and depression, using semi-structured interviews and the symptom rating scale from the Views of Informal Carers-Evaluation of Services (VOICES) interview. Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies' interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.

Adaptation, Psychological↗
PubMed2003

Translating clinical tools in nursing practice.

BACKGROUND: The widespread use of clinical tools in nursing practice reflects their usefulness in guiding patient care, evaluating treatment effectiveness and conducting audit. Cultural awareness and the provision of culturally competent care is a high priority for nurses in the United Kingdom (UK), given patterns of increasing ethnic diversity. However, meeting the individual needs of patients can be difficult when language barriers hinder communication. One way to address these difficulties is to translate existing clinical tools. AIM: The aim of this paper is to appraise the potential for, and limitations of, translating clinical tools for use in nursing practice. DISCUSSION: Drawing on a range of studies from the disciplines of health and social science, this review describes and discusses some key considerations relevant to translating clinical tools in nursing. These considerations include the need to ensure cultural equivalence, lack of familiarity with clinical tool formats in some cultures and its impact on responses, and low literacy levels in some populations. CONCLUSION: Clinical tools provide benefits in identifying patients' problems, guiding patient care, and evaluating treatments and interventions. Translating these tools can help to bridge the language gap that hinders good communication between nurses and patients. Translated clinical tools can be of acceptable cultural equivalence and validity if high quality translation methodologies are employed, together with an awareness of culturally relevant issues when interpreting the information gained from the tools.

Communication Barriers↗
PubMed2003

Place of death and use of health services in the last year of life.

AIM: To investigate whether health service input in the last year of life differs between cancer patients who die at home versus those dying in inpatient care. METHODS: Post hoc exploratory case-control study of 127 home deaths and 200 inpatient deaths. Retrospective electronic record linkage of patients' community and inpatient care during the last year of life. RESULTS: Patients who died at home began their home nursing care closer to death than those who died as inpatients. Their first contact with inpatient hospice care began further from death. Before their final month, home death patients also had more specialist and district nursing than patients who died in inpatient care. CONCLUSIONS: Patients who began their home nursing early were less likely to die at home than those who began such care late. This suggests that it may be difficult to sustain end-of-life care at home for an extended period. Further research incorporating assessment of informal care input and disease trajectory is required to investigate this issue.

Aged↗
PubMed2002

A qualitative study of chronic heart failure patients' understanding of their symptoms and drug therapy.

OBJECTIVES: To explore patients' understanding of their symptoms and the treatment of their heart failure. DESIGN: Qualitative analysis of in-depth interviews, using a constant comparative approach. SUBJECTS: 27 patients identified by Cardiology and Care of the Elderly physicians as having (a) symptomatic heart failure (New York Heart Association functional classes II, III and IV) and (b) a hospital admission for heart failure in the previous 20 months. RESULTS: Patients were aged between 38-94 years (mean 69), 20 were in NYHA functional class III or IV. All had at least one concurrent illness. Analysis of the data identified four key areas: patients had little understanding of the purpose of their medications, were concerned about both the quantity and combination of drugs they were prescribed, had difficulties in differentiating between the side effects of drugs and symptoms of heart failure, and had little knowledge to help them interpret and/or treat changing symptoms. CONCLUSION: Providing patients with relevant information about their medications may help to reduce anxiety about the drugs they are taking. Acknowledging the symptoms associated with heart failure and the likely side effects of treatments might improve patients' ability to interpret, treat or relieve symptoms.

Adult↗