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Biomedical subjects

Alison Chapple

Publications and source records attributed to Alison Chapple.

15 recordsLinked to original sources
PubMed2006

Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer.

PURPOSE: To explore fertility issues for young men who had been diagnosed and treated for cancer and to examine communication problems surrounding these fertility issues. METHOD: Narrative interviews were conducted with 21 young men previously treated for cancer in the United Kingdom. Eighteen talked about fertility issues at some length. A qualitative interpretive approach was taken, combining thematic analysis with constant comparison. RESULTS: Communication about sperm storage was sometimes difficult and embarrassing. Young men wanted the opportunity to bank their sperm but decisions were often rushed. Some would have appreciated counseling and were unprepared for the process of sperm banking and criticized facilities. Uncertainty about fertility status caused worries for the future. CONCLUSIONS: More still needs to be done to help young men with cancer to address issues of fertility. All adolescents and young men treated for cancer should be offered sperm banking if their fertility may be affected. They should be offered counseling at every stage by professionals who feel comfortable talking about the subject. Interactive, educational CD-ROMs or websites may be useful. Physical facilities for sperm banking should be improved.

Adolescent↗
PubMed2006

Interviewing people with terminal illness: practical and ethical issues.

The material gathered can provide valuable insight but interviewing those in the latter stages of their lives poses a number of difficult issues for nurse researchers. Alison Chapple's article explores some of the dilemmas involved and explains how one researcher sought to overcome them.

Humans↗
PubMed2005

The specialist palliative care nurse: a qualitative study of the patients' perspective.

BACKGROUND: Relatively little is known about patients' perceptions of the work and role of the specialist palliative care nurse. Understanding the patients' perspective can help to evaluate services, improve quality of care, and identify misunderstandings. OBJECTIVES: To explore the experiences of those who said that they had a 'terminal illness', focusing on patients' perceptions of the work and role of these nurses. DESIGN: Qualitative study with narrative interviews. SETTING: England and Wales. PARTICIPANTS: Forty-one people recruited through those working in hospices, community nurses, general practitioners, support groups, a national newspaper, and a conference on palliative care. Twenty-five people talked about the work of specialist palliative care nurses. METHOD: Interviews were fully transcribed; followed by a thematic analysis with constant comparison. RESULTS: Patients valued the nurses' work, particularly their advice on practical matters, information given about their disease, emotional support, advice on symptoms, and help with communication. They were glad that help was readily available. However, some patients who had been referred to the service did not realise that specialist palliative care nurses may be involved at a relatively early stage in a person's illness, and sometimes felt distressed by an early referral. One woman felt she had not had the emotional support she needed and another knew of women who had been upset because these nurses had discussed topics such as place of death 'too early'. However, people recognised the difficulties nurses faced in their work. CONCLUSIONS: Although our study differs from other studies, particularly in the way people were recruited, our findings support previous studies that have shown that specialist palliative care nurses are highly valued by those who have a terminal illness. It is important for people to understand that these nurses may be involved from the time of diagnosis and that roles have changed.

Adult↗
PubMed2005

Many people with epilepsy want to know more: a qualitative study.

OBJECTIVE: To explore why, at the turn of the 21st century, many people with epilepsy still want more information. METHODS: Qualitative study with a maximum variation sample in the UK. We interviewed 38 men and women, 35 with epilepsy and three carers of people with epilepsy, recruited through GPs, neurologists, support groups and charities. RESULTS: People with epilepsy obtained information via health professionals, epilepsy organisations, leaflets, books, and the Internet. Many people wanted much more information about treatment options. People wanted to discuss the advantages and disadvantages of different drugs with their consultants, who were sometimes too busy. People also wanted to know more about the causes of epilepsy, partly because they feared the stigma associated with it, and other matters, such as Sudden Unexpected Death in Epilepsy [SUDEP]. CONCLUSION: The UK government plans to provide better services for those with epilepsy but, without enough money to employ more specialists, the information needs of patients may not be met. For concordance to work effectively doctors need to be aware of what patients think about their drugs, and patients need more information about treatment options. They also need more time to discuss the causes of epilepsy in order to reduce stigma and fear. Since time in consultations is short, clinicians should inform patients about epilepsy organisations, and direct them to websites such as the DIPEx (Personal Experiences of Health and Illness) epilepsy website (www.dipex.org/epilepsy), which focuses on patients' experiences of epilepsy and provides reliable information about medicines, other treatments, and resources.

Adult↗
PubMed2004

How the internet affects patients' experience of cancer: a qualitative study.

OBJECTIVE: To explore how men and women with cancer talk about using the internet. DESIGN: Qualitative study using semistructured interviews collected by maximum variation sampling. SETTING: Respondents recruited throughout the United Kingdom during 2001-2. PARTICIPANTS: 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up. RESULTS: Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of "social fitness." CONCLUSION: Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people's self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness.

Adult↗
PubMed2004

Framing the doctor-patient relationship in chronic illness: a comparative study of general practitioners' accounts.

How family doctors conceptualise chronic illness in the consultation has important implications for both the delivery of medical care, and its experience by patients. In this paper, we present the results of a re-analysis of qualitative data collected in a series of studies of British family doctors between 1995 and 2001, to explore the ways in which the legitimacy and authority of medical knowledge and practice are organised and worked out in relation to three kinds of chronic illness (menorrhagia; depression; and chronic low back pain/medically unexplained symptoms). We present a comparative analysis of (a). the moral evaluation of the patient (and judgements about the legitimacy of symptom presentation); (b). the possibilities of disposal; and (c). doctors' empathic responses to the patient, in each of these clinical cases. Our analysis defines some of the fundamental conditions through which general practitioners frame their relationships with patients presenting complex but sometimes diffuse combinations of 'social', 'psychological' and 'medical' symptoms. These are fundamental to, yet barely touched by, the increasingly voluminous literature on how doctors should interact with patients. Moving beyond the individual studies from which our data are drawn, we have outlined some of the highly complex and demanding features of what is often seen as routine and unrewarding medical work, and some of the key requirements for the local negotiation of patients' problems and their meanings (for both patients and doctors) in everyday general practice.

Attitude of Health Personnel↗
PubMed2004

The role of humor for men with testicular cancer.

In this article, the authors examine how 45 men talked about "pure" and "applied" humor in qualitative interviews about their experience of testicular cancer. Most described using applied humor in work and social settings to challenge assumptions about the disease, and in health settings to manage feelings, hide embarrassment, reduce tension, share a sense of solidarity with others, or encourage others to examine themselves. Men also described their usually positive reaction to jokes made by others; jokes helped to dispel tension and reassured men that they were being treated as normal. In a few accounts, men revealed how humor was hurtful. They were sometimes upset about jokes made by others, or by the idea of jokes being made, fearing humiliation and stigma. Humor might ease difficult interactions, but our results suggest that clinicians and others should be careful not to initiate humor without a clear lead from the patient.

Adaptation, Psychological↗
PubMed2004

Qualitative study of men's perceptions of why treatment delays occur in the UK for those with testicular cancer.

BACKGROUND: Many studies (but not all) have shown that for men with testicular cancer a longer treatment delay is associated with additional treatments, greater morbidity, and shorter survival. AIM: This paper explores patients' perspectives on why treatment delays occur. DESIGN: Qualitative study using narrative interviews SETTING: Interviews in patient's homes throughout the United Kingdom (UK). METHOD: Interviews with a maximum variation sample of 45 men with testicular cancer, recruited through general practitioners (GPs), urologists, support groups, and charities. RESULTS: Those who sought help relatively quickly responded to symptoms, had heard about testicular cancer in the media, had seen leaflets in GPs' surgeries, or knew others with this disease. Men delayed because they did not recognise signs and symptoms; feared appearing weak, a hypochondriac, or lacking in masculinity; recalled past illness or painful examinations; were embarrassed; feared the consequences of treatment; or lacked time to consult their doctors. Beliefs about symptoms and pessimistic associations with cancer also led to delay. Treatment delays also resulted from misdiagnosis or waiting lists. CONCLUSION: Whether or not men should be taught to examine themselves routinely to check for testicular cancer is much debated. This study suggests that it is important that men are aware of the normal shape and feel of their testicles, and may benefit from information about signs and symptoms of testicular cancer and the excellent cure rate. Information, provided in surgeries where men feel welcome, might encourage men to seek help promptly when a problem arises. Our study also suggests that GPs may need to accept a low threshold for ultrasound investigation of testicular symptoms and that the ultrasound service needs to be improved. These measures may further reduce mortality and morbidity.

Adult↗
PubMed2004

Lung cancer patients' perceptions of access to financial benefits: a qualitative study.

BACKGROUND: Financial worries may add to the stress experienced by patients and their families, but they are often not discussed with health professionals. People with lung cancer usually have to give up work, and many are terminally ill. AIM: To explore the financial concerns, perceptions and experiences of claiming benefits of people with lung cancer. DESIGN OF STUDY: Qualitative study using narrative interviews. SETTING: United Kingdom. METHOD: Interviews with a maximum variation sample of 45 people with lung cancer, recruited through general practitioners, consultants, nurses and support groups. RESULTS: Some people did not know that they could claim financial benefits, others found claim forms complicated, or were unaware that they had no legal right for important allowances to be backdated. Some people had to 'struggle' to obtain much needed benefits to which they were entitled. Patients below retirement age said that they would prefer to be working, and many were shocked by how hard it was to obtain the information needed to make claims. There was some evidence that even those who are seriously ill, and life-time tax payers, feel stigma in claiming financial help. Nurses, doctors and other patients sometimes offered valuable guidance, but many patients did not receive timely advice. The special social security rules (and DS1500 report form), which might have allowed them to claim benefits more rapidly than usual and at a higher rate, were not always understood. CONCLUSION: Many reasons were found as to why people with lung cancer have difficulty getting the benefits that they are entitled to. Hospital and primary care staff who handle the issue sensitively and help set claims in motion provide a valuable service that should be replicated throughout the National Health Service.

Adult↗
PubMed2002

Why men with prostate cancer want wider access to prostate specific antigen testing: qualitative study.

OBJECTIVES: To explore the attitudes of men with confirmed or suspected prostate cancer to testing for prostate specific antigen. DESIGN: Qualitative interview study with a purposive sample. SETTING: Great Britain. PARTICIPANTS: 52 men with suspected or confirmed prostate cancer, recruited through general practitioners, urologists, patient support groups, and charities. RESULTS: Almost all men remembered their prostate specific antigen test but recalled being given little information beforehand. Arguments in favour of increased access to testing included the belief that early diagnosis would reduce mortality, improve quality of life, and save the NHS money. Men also thought that a national screening programme should be available because symptoms can be ambiguous, screening for cancer is responsible health behaviour, and screening would encourage men to be tested. Four men who opposed a screening programme had gathered information alerting them to uncertainty about the benefits of treatment, and two regretted that they had been tested. Others thought that access to testing is restricted in the United Kingdom because of a lack of government backing, concerns about the accuracy of the test, and a lack of resources. CONCLUSIONS: The few men in this study who subscribed to the argument that evidence of the benefits of treatment is a prerequisite for a screening programme did not want to see screening introduced. Men who proposed an alternative set of principles for testing gave reasons that did not all relate to overoptimism about the benefits of early diagnosis. People who plan services and people who respond to requests for testing need to understand men's perspectives and concerns.

Attitude to Health↗
PubMed2002

Users' understanding of medical knowledge in general practice.

Much emphasis is now being placed on the quality of medical care, and various ways are being developed to assess the medical knowledge of general practitioners. It is increasingly recognised that the users perspective on health care is important, and that the views of health care professionals do not and cannot represent patients' views. In order to explore whether or not a large-scale survey, which asked people to rate their doctors' medical knowledge, yielded meaningful results, this paper draws on findings from a study involving in-depth interviews with 26 lay people who had already completed the General Practice Assessment Survey questionnaire. When completing the questionnaires, patients had been asked to consider the 'technical care' provided by their general practitioners and to make a judgement about their doctors' medical knowledge. When interviewed at a later date, some people explained that they defined medical knowledge as knowledge of 'disease and treatments', while others defined it as knowledge of the 'whole person', and some defined a knowledgeable doctor as one who would acknowledge uncertainty. Patients appeared to have made judgements about their general practitioners' medical knowledge based on many factors, such as their experience of illness, perceptions of professional training, contact with other health care professionals in both primary and secondary care, and exposure to the media. The paper discusses the nature of medical knowledge, and concludes that although patient surveys are useful for the evaluation of interpersonal care and access to care, asking patients about their general practitioners' medical knowledge may yield invalid results. This is partly because patients defined medical knowledge in different ways, and partly because it appears that relatively few patients had enough knowledge about their own particular illnesses, or about possible alternative treatments, to make informed judgements about their general practitioners' medical knowledge.

Clinical Competence↗
PubMed2002

Variations in use of tertiary cardiac services in part of North-West England.

We assess the extent to which the need for tertiary cardiac care is being met uniformly within two Health Authorities in North-West England. We analyse small-area data from 1993-1996 on standardised rates of investigation (angiography) and surgery (bypass grafts and angioplasty). Utilisation by electoral ward is shown to be related to material deprivation. Small areas in which the Asian population is high have significantly fewer angiograms and angioplasties than might be expected according to need, while there is some evidence that women do not receive the levels of bypass surgery that might be expected.

Angioplasty, Balloon, Coronary↗
PubMed1999

'Self-care' and its relevance to developing demand management strategies: a review of qualitative research.

The promotion of self-care has been recognized as an important aspect of managing demand for health care more effectively. Self-care is increasingly being seen by policy makers as a hidden health care resource to be viewed in the context of health care provided by the formal health care sector. Quantitative studies are important for understanding the effectiveness of interventions in terms of the impact they may have on health service utilization. However, questions remain about the reasons people may or may not adopt self-care, the mechanisms for change and the way in which social context may affect the way in which people respond to self-care interventions. Qualitative research that has focused on people's self-care practices provide insights into these aspects. The qualitative studies reviewed here suggest that a number of factors need to be considered when devising health care interventions for managing demand better. These include an assessment of the meaning of the disease to the person so that self-care information can be designed in a way that fits people's prior beliefs and lifestyles. Timing and the stage in a person's illness career are also important factors to consider when designing effective self-care interventions. Social interaction and the impact of significant others may affect whether or not a self-care regime is followed, and autonomy and control are also relevant to designing acceptable self-care strategies. Incorporating these aspects of self-care as a dynamic and interactive process is important for both devising and assessing the impact of interventions aimed at the better management of demand.

Journal Article↗