'Oral Cancer is a Punishment for my Sins': Oral Histories of Oral Cancer, Fatalism and Islamic Religious Beliefs in Pakistan.

This paper explores how Islamic religious beliefs; spiritual practices and fatalism may act as barriers to a diagnosis of oral cancer in Rawalpindi/Islamabad Pakistan. The qualitative methodology is oral history and interviews took place with fifteen women diagnosed with oral cancer and receiving treatment in hospital. The research provides a model illustrating how religiosity, fatalism and the social determinants of health exist on a continuum and influence the perspectives of women in Pakistan, contributing to their late presentation and diagnosis of oral cancer. Analysis of the patients' oral histories, suggests improved communication between medical professionals and integration of spiritual/traditional healers into the existing health care system of Pakistan which may assist in reducing oral health inequalities.

A Pilot Randomized Controlled Trial of a Holistic Needs Assessment Questionnaire in a Supportive and Palliative Care Service.

CONTEXT: At present, there is no widely used systematic evidence-based holistic approach to assessment of patients' supportive and palliative care needs. OBJECTIVES: To determine whether the use of a holistic needs assessment questionnaire, Sheffield Profile for Assessment and Referral for Care (SPARC), will lead to improved health care outcomes for patients referred to a palliative care service. METHODS: This was an open, pragmatic, randomized controlled trial. Patients (n = 182) referred to the palliative care service were randomized to receive SPARC at baseline (n = 87) or after a period of two weeks (waiting-list control n = 95). Primary outcome measure is the difference in score between Measure Yourself Concerns and Wellbeing (MYCAW) patient-nominated Concern 1 on the patient self-scoring visual analogue scale at baseline and the two-week follow-up. Secondary outcomes include difference in scores in the MYCAW, EuroQoL (EQ-5D), and Patient Enablement Instrument (PEI) scores at Weeks 2, 4, and 6. RESULTS: There was a significant association between change in MYCAW score and whether the patients were in the intervention or control group (χ(2)trend = 5.51; degrees of freedom = 1; P = 0.019). A higher proportion of patients in the control group had an improvement in MYCAW score from baseline to Week 2: control (34 of 70 [48.6%]) vs. intervention (19 of 66 [28.8%]). There were no significant differences (no detectable effect) between the control and intervention groups in the scores for EQ-5D and Patient Enablement Instrument at 2-, 4-, or 6-week follow-up. CONCLUSION: This trial result identifies a potential negative effect of SPARC in specialist palliative care services, raising questions that standardized holistic needs assessment questionnaires may be counterproductive if not integrated with a clinical assessment that informs the care plan.

OA19†Can oral history in palliative care influence the well-being of participants and the bereaved?

BACKGROUND: Oral history is the audio recording of unique life experience. Participants are involved in producing their own life histories, in their own voice, with no medical agenda. Oral history in palliative care began as a service in Sheffield in 2007 with Sheffield Hospitals Charity. In 2012 Macmillan Cancer Support piloted five further services in the North of England and Northern Ireland. AIM: To assess the impact of recording an oral history in palliative care and to understand how the recording is received by family in bereavement. METHODS: The study conducted semi-structured interviews with people associated with oral history in Sheffield. Thirty two interviews were carried out with 10 patients; 9 bereaved family members; 6 health and social care professional; 7 bereavement support volunteers. RESULTS: People who had made recordings said that it was an enjoyable experience and that creating a family record was important to them. Bereaved family and friends stressed that having a voice recording was important for them and a comfort to listen to. The process of making the recording brought families together to share memories and find connexions and meanings. CONCLUSION: Oral history interviewees, their family, bereavement volunteers and health professionals were enthusiastic about oral history. The research highlighted that creating a personal voice legacy can be an act of caring by the dying person, to help families subsequently cope with loss. The oral history process is seen as positive for the well-being of individuals in palliative care and bereaved family and friends.

Consumer views on a new holistic screening tool for supportive and palliative-care needs: Sheffield Profile for Assessment and Referral for Care (SPARC): a survey of self-help support groups in health care.

BACKGROUND: Sheffield Profile for Assessment and Referral for Care (SPARC) was developed in response to concerns that palliative care may not be reaching all people who could benefit from it. Acceptability of the tool is an important step in developing its future use. AIMS: To elicit the views of a wide variety of members of consumer and self-help support groups concerned with health care on the relevance, acceptability and the overall perception of using SPARC as an early holistic needs assessment tool in supportive and palliative care. METHODS: This study was conducted in South Yorkshire and North Derbyshire (UK). Ninety-nine consumer and self-help groups were identified from information in the public domain. Thirty-eight groups participated. Packs containing study information and self-complete postal questionnaires were distributed to groups, and they were asked to circulate these to their members. Completed questionnaires were returned in pre-paid envelopes to the research team. RESULTS: 135 questionnaires and feedback forms were returned. The majority of respondents found SPARC easy to understand (93% (120/129; 95% Confidence Interval 87% to 96%) and complete (94% (125/133; 95% CI: 88% to 97%). A minority, 12.2% (16/131), of respondents found questions on SPARC 'too sensitive'. CONCLUSIONS: Overall, respondents considered SPARC an acceptable and relevant tool for clinical assessment of supportive and palliative-care needs. Whilst a small minority of people found SPARC difficult to understand (i.e. patients with cognitive impairments), most categories of service user found it relevant. Clinical studies are necessary to establish the clinical utility of SPARC.

Attitudes of health care professionals to opioid prescribing in end-of-life care: a qualitative focus group study.

CONTEXT: Opioid therapy is central to the management of pain in the field of generalist palliative and end-of-life care, and international guidelines highlight the need for opioids to be used as part of a comprehensive strategy to treat pain. However, evidence suggests that the use of opioids in palliative care is suboptimal, and many patients do not receive adequate pain control at the end of life. OBJECTIVES: This study aimed to explore the attitudes of health care professionals to opioid prescribing in generalist end-of-life care. METHODS: Thirty-one health and allied health professionals participated in four focus groups. Two focus groups took place in general practitioner practices and two in hospices. RESULTS: Findings revealed that significant barriers exist to the appropriate use of opioids in end-of-life care. Particular barriers exist for professionals working in primary care and include concerns about giving high doses and having insufficient training in opioid use. Working partnerships between specialist and generalist palliative care providers are important for increasing generalist confidence in prescribing. Patients and their families often have concerns about initiating opioids, and specialist nursing staff are crucial to managing and alleviating these concerns. CONCLUSION: Significant barriers exist to the appropriate use of opioids in end-of-life care. If international priorities on improving pain management at the end of life are to be achieved, educational opportunities for generalists need to be enhanced, and effective interprofessional working models need to be developed so that pain management for patients at the end of life is optimized.

Pain and palliative care: the emergence of new specialties.

In the second half of the twentieth century, the clinical management of patients suffering pain from advanced cancer was transformed. This paper describes cancer pain management during this period, identifying three key elements that promoted innovation: First, the development of a patient-centered approach to analgesic evaluation, which resulted from the search for an alternative analgesic to morphine in studies led by Raymond Houde. Second, the re-introduction by John Bonica of the idea that pain is what the individual feels and thinks it is. Third, the work of Cicely Saunders in establishing the foundations of the modern hospice and palliative care movement. The work of these three clinicians must be set in the context of a time when new hopes emerged that cancer could be cured and, at the same time, the cancer patient began to be remolded from a passive participant in treatment and care to an active collaborator.

The measurement of pain, 1945-2000.

Three strands of activity can be identified in the history of pain measurement. The first, psychophysics, dates back to the nineteenth century and measures the effect of analgesia by quantifying the noxious stimulation required to elicit pain, as well as the maximum stimulation tolerated. The second uses standardized questionnaires for patients, developed to categorize pain according to its emotional impact, distribution, character, and other dimensions. The third asks patients to report on pain intensity using rating scales, and is used in clinical trials where analgesics are evaluated and results can be combined to influence clinical guidelines and protocols. Although all three strands have found a place in modern clinical practice or drug development, it is the reporting of pain by patients undergoing treatment using simple scales of intensity which has emerged as the crucial method by which analgesic therapies can now be evaluated and compared.

Stories of cancer pain: a historical perspective.

This article considers published accounts by people with personal experience of cancer, and cancer pain, from 1945 to the present. These firsthand stories communicate deeply personal truths and understandings--and this is their value. Narratives of cancer can inform and support others with the disease and contribute meaningful knowledge to health professionals about the subjective experience of living with cancer and cancer pain. They also highlight where improvements can be made in health care and serve as a platform from which patients may criticize, expose, petition, support, share, challenge, and call for autonomy. A cancer diagnosis can rupture the life of the person who receives it, but as this article illustrates, inscribing the words of a narrative and revealing experiences to a public audience can bring meaning to a life event which might otherwise be viewed as meaningless.

Motivation and neuropsychological test performance following mild head injury.

Effect of motivation on neuropsychological test performance in mild head injury was assessed. Motivation was measured using the Portland Digit RecognitionTest. Three groups were compared: (a) mildhead injury, financial incentives, good motivation; (b) mild head injury, financial incentives, poor motivation; (c) moderate/severe head injury, good motivation. The neuropsychological battery included measures of sensory function, motor function, attention, intelligence, abstract reasoning, and memory. Mild head injury well motivated patients performed significantly better than the other two groups on some tests. Mild head injury poorly motivated individuals and moderate-severe head injury patients were indistinguishable on many tests. Consistent with previous reports, tactile sensory (finger recognition and Fingertip Number Writing Perception) and recognition memory (Rey Auditory Verbal Learning) tasks were identified as clinically useful measures of poor motivation. On these measures mild head injury well motivated examinees performed no better than moderate-severe patients, with both groups superior to mild head injury poorly motivated examinees. Sensitivity and specificity data are reported. Our measures of tactile sensation and verbal recognition memory were more affected by motivation than by the severity of head injury.