The landscape of pain management in people with dementia living in care homes: a mixed methods study.

OBJECTIVES: The aim of this study is to explore the current landscape of pain management in people with dementia living in care home settings. Pain is extremely common in this patient group, yet there is very limited guidance for healthcare professionals. METHODS: Triangulation of stakeholder consultation and quality review of pain management guidance were performed. A review of existing pain management guidance was conducted using published quality criteria adapted for the field. Three focus group discussions were held with care home staff and two focus group discussions and an online survey with family carers. Data were subjected to thematic analysis to identify themes and sub-themes. Outcomes were reviewed by an expert panel, which gave recommendations. RESULTS: Fifteen existing guidelines were identified, of which three were designed for use in dementia and none were tailored for care home settings. Thematic analysis revealed six major themes in current pain management in dementia: importance of person-centredness, current lack of pain awareness in staff, communication as a core element, disparities in staff responsibility and confidence, the need for consistency of care and current lack of staff training. In addition to the needs for practice, the expert panel identified promising pharmacological treatment candidates, which warrant clinical evaluation. CONCLUSIONS: The findings of this study clearly articulate a need for an evidence-based pain management programme for care homes, which is informed by stakeholder input and based within a conceptual framework for this setting. There are novel opportunities for clinical trials of alternative analgesics for use in this patient group. Copyright © 2016 John Wiley & Sons, Ltd.

Supporting self-management of pain by patients with advanced cancer: views of palliative care professionals.

PURPOSE: The aim of the study is to ascertain the views of specialist palliative care professionals on patient self-management of cancer pain in order to inform the development of a new educational intervention to support self-management. METHODS: This is a qualitative research study using focus group interviews. RESULTS: Participants viewed self-management of cancer pain as desirable and achievable but also as something that could be problematic. Challenges to self-management were perceived in patient attitudes and behaviours, professionals' own beliefs and actions and the wider social system. Practitioners showed awareness of potential tension between their espoused views (the desirability that patients manage pain autonomously) and their tacit views (the undesirability of patients managing pain in ways which conflict with professionals' knowledge and identity). CONCLUSIONS: Practitioners espoused patient-centred professional practice which inclined them towards supporting self-management. They showed awareness of factors which might inhibit them from effectively incorporating education and support for self-management into routine practice.

The assessment and management of pain in patients with dementia in hospital settings: a multi-case exploratory study from a decision making perspective.

BACKGROUND: Pain is often poorly managed in people who have a dementia. Little is known about how this patient population is managed in hospital, with research to date focused mainly on care homes. This study aimed to investigate how pain is recognised, assessed and managed in patients with dementia in a range of acute hospital wards, to inform the development of a decision support tool to improve pain management for this group. METHODS: A qualitative, multi-site exploratory case study. Data were collected in four hospitals in England and Scotland. Methods included non-participant observations, audits of patient records, semi-structured interviews with staff and carers, and analysis of hospital ward documents. Thematic analysis was performed through the lens of decision making theory. RESULTS: Staff generally relied on patients' self-report of pain. For patients with dementia, however, communication difficulties experienced because of their condition, the organisational context, and time frames of staff interactions, hindered patients' ability to provide staff with information about their pain experience. This potentially undermined the trials of medications used to provide pain relief to each patient and assessments of their responses to these treatments. Furthermore, given the multidisciplinary environment, a patient's communication about their pain involved several members of staff, each having to make sense of the patient's pain as in an 'overall picture'. Information about patients' pain, elicited in different ways, at different times and by different health care staff, was fragmented in paper-based documentation. Re-assembling the pieces to form a 'patient specific picture of the pain' required collective staff memory, 'mental computation' and time. CONCLUSIONS: There is a need for an efficient method of eliciting and centralizing all pain-related information for patients with dementia, which is distributed in time and between personnel. Such a method should give an overall picture of a patient's pain which is rapidly accessible to all involved in their care. This would provide a much-needed basis for making decisions to support the effective management of the pain of older people with dementia in hospital.

Exploring the Influence of Patient-Professional Partnerships on the Self-Management of Chronic Back Pain: A Qualitative Study.

Patients are encouraged to take an active role in self-managing their chronic back pain and functional problems. However, research suggests that patients do not self-manage, and they expect health professionals to fulfill a comprehensive role in managing pain. A partnership between patients and health professionals is called for, and self-management works best when they share knowledge and work together toward optimal goals. To explore how patients' partnerships with health professionals may influence their ability to self-manage pain by exploring patients' experiences. A grounded theory approach with in-depth, semistructured interviews was undertaken. Each interview was analyzed using constant comparative analysis. This study was nested within a larger study on patient-professional partnerships and the self-management of chronic back pain. Twenty-six patients with chronic back pain were recruited in a community-based pain management service in Northern England, United Kingdom. Three themes emerged: building partnerships with health professionals; being supported by health professionals to self-manage the pain; and experiencing a change in self-management. Five approaches that underpinned health professionals' self-management support were identified. Facilitators of and barriers to a good partnership were reported. This study suggests that a good patient-professional partnership has a positive effect on patients' self-management ability. A theoretical model explaining how such partnership may influence self-management was developed. It is necessary for both patients and health professionals to be aware of their partnerships, which may enhance the effect of pain management services.

Understanding long-term opioid prescribing for non-cancer pain in primary care: a qualitative study.

BACKGROUND: The place of opioids in the management of chronic, non-cancer pain is limited. Even so their use is escalating, leading to concerns that patients are prescribed strong opioids inappropriately and alternatives to medication are under-used. We aimed to understand the processes which bring about and perpetuate long-term prescribing of opioids for chronic, non-cancer pain. METHODS: We held semi-structured interviews with patients and focus groups with general practitioners (GPs). Participants included 23 patients currently prescribed long-term opioids and 15 GPs from Leeds and Bradford, United Kingdom (UK). We used a grounded approach to the analysis of transcripts. RESULTS: Patients are driven by the needs for pain relief, explanation, and improvement or maintenance of quality of life. GPs' responses are shaped by how UK general practice is organised, available therapeutic choices and their expertise in managing chronic pain, especially when facing diagnostic uncertainty or when their own approach is at odds with the patient's wishes. Four features of the resulting transaction between patients and doctors influence prescribing: lack of clarity of strategy, including the risk of any plans being subverted by urgent demands; lack of certainty about locus of control in decision-making, especially in relation to prescribing; continuity in the doctor-patient relationship; and mutuality and trust. CONCLUSIONS: Problematic prescribing occurs when patients experience repeated consultations that do not meet their needs and GPs feel unable to negotiate alternative approaches to treatment. Therapeutic short-termism is perpetuated by inconsistent clinical encounters and the absence of mutually-agreed formulations of underlying problems and plans of action. Apart from commissioning improved access to appropriate specialist services, general practices should also consider how they manage problematic opioid prescribing and be prepared to set boundaries with patients.

The relative meaning of absolute numbers: the case of pain intensity scores as decision support systems for pain management of patients with dementia.

BACKGROUND: Assessment and management of pain in patients with dementia is known to be challenging, due to patients' cognitive and/or communication difficulties. In the UK, pain in hospital is managed through regular assessments, with the use of pain intensity scores as triggers for action. The aim of this study was to understand current pain assessment practices, in order to later inform the development of a decision support tool designed to improve the management of pain for people with dementia in hospital. METHODS: An exploratory study was conducted in four hospitals in the UK (11 wards), with observations of patients with dementia (n = 31), interviews of staff (n = 52) and patients' family members (n = 4) and documentary analysis. A thematic analysis was carried out, structured along dimensions of decision making. This paper focuses on the emergent themes related to the use of assessment tools and pain intensity scores. RESULTS: A variety of tools were used to record pain intensity, usually with numerical scales. None of the tools in actual use had been specifically designed for patients with cognitive impairment. With patients with more severe dementia, the patient's body language and other cues were studied to infer pain intensity and then a score entered on behalf of the patient. Information regarding the temporality of pain and changes in pain experience (rather than a score at a single point in time) seemed to be most useful to the assessment of pain. CONCLUSIONS: Given the inherent uncertainty of the meaning of pain scores for patients with dementia, numerical scales were used with caution. Numerical scores triggered action but their meaning was relative - to the patient, to the clinician, to the time of recording and to the purpose of documenting. There are implications for use of data and computerized decision support systems design. Decision support interventions should include personalized alerting cut-off scores for individual patients, display pain scores over time and integrate professional narratives, mitigating uncertainties around single pain scores for patients with dementia.

Managing lifestyle change to reduce coronary risk: a synthesis of qualitative research on peoples' experiences.

BACKGROUND: Coronary heart disease is an incurable condition. The only approach known to slow its progression is healthy lifestyle change and concordance with cardio-protective medicines. Few people fully succeed in these daily activities so potential health improvements are not fully realised. Little is known about peoples' experiences of managing lifestyle change. The aim of this study was to synthesise qualitative research to explain how participants make lifestyle change after a cardiac event and explore this within the wider illness experience. METHODS: A qualitative synthesis was conducted drawing upon the principles of meta-ethnography. Qualitative studies were identified through a systematic search of 7 databases using explicit criteria. Key concepts were identified and translated across studies. Findings were discussed and diagrammed during a series of audiotaped meetings. RESULTS: The final synthesis is grounded in findings from 27 studies, with over 500 participants (56% male) across 8 countries. All participants experienced a change in their self-identity from what was 'familiar' to 'unfamiliar'. The transition process involved 'finding new limits and a life worth living' , 'finding support for self' and 'finding a new normal'. Analyses of these concepts led to the generation of a third order construct, namely an ongoing process of 'reassessing past, present and future lives' as participants considered their changed identity. Participants experienced a strong urge to get back to 'normal'. Support from family and friends could enable or constrain life change and lifestyle changes. Lifestyle change was but one small part of a wider 'life' change that occurred. CONCLUSIONS: The final synthesis presents an interpretation, not evident in the primary studies, of a person-centred model to explain how lifestyle change is situated within 'wider' life changes. The magnitude of individual responses to a changed health status varied. Participants experienced distress as their notion of self identity shifted and emotions that reflected the various stages of the grief process were evident in participants' accounts. The process of self-managing lifestyle took place through experiential learning; the level of engagement with lifestyle change reflected an individual's unique view of the balance needed to manage 'realistic change' whilst leading to a life that was perceived as 'worth living'. Findings highlight the importance of providing person centred care that aligns with both psychological and physical dimensions of recovery which are inextricably linked.

Assessing the quality and usability of smartphone apps for pain self-management.

OBJECTIVE: To evaluate smartphone apps intended for self-management of pain using quality assessment criteria and usability testing with prospective users. DESIGN: 1) Survey and content analysis of available apps; and 2) individual usability study of two apps. SETTING: University of Leeds, United Kingdom. PARTICIPANTS: Forty-one participants (aged 19-59 years) with experience of chronic or recurrent pain episodes. METHODS: We undertook a survey, content analysis, and quality appraisal of all currently available mobile phone apps for self-management of pain. Two apps were then selected and assessed with usability testing. RESULTS: Twelve apps met the inclusion criteria. The quality assessment revealed wide variation in their clinical content, interface design, and usability to support self-management of pain. Very little user or clinician involvement was identified in the development of the apps. From the usability testing, participants stated a preference for an interface design employing a lighter color scheme and particular text font. Although very few participants were aware of pain-reporting apps prior to participation, many would consider use in the future. CONCLUSIONS: Variation in app quality and a lack of user and clinician engagement in development were found across the pain apps in this research. Usability testing identified a range of user preferences. Although useful information was obtained, it would be beneficial to involve users earlier in the process of development, as well as establishing ways to merge end user requirements with evidence-based content, to provide high-quality and usable apps for self-management of pain.

Pain assessment for people with dementia: a systematic review of systematic reviews of pain assessment tools.

BACKGROUND: There is evidence of under-detection and poor management of pain in patients with dementia, in both long-term and acute care. Accurate assessment of pain in people with dementia is challenging and pain assessment tools have received considerable attention over the years, with an increasing number of tools made available. Systematic reviews on the evidence of their validity and utility mostly compare different sets of tools. This review of systematic reviews analyses and summarises evidence concerning the psychometric properties and clinical utility of pain assessment tools in adults with dementia or cognitive impairment. METHODS: We searched for systematic reviews of pain assessment tools providing evidence of reliability, validity and clinical utility. Two reviewers independently assessed each review and extracted data from them, with a third reviewer mediating when consensus was not reached. Analysis of the data was carried out collaboratively. The reviews were synthesised using a narrative synthesis approach. RESULTS: We retrieved 441 potentially eligible reviews, 23 met the criteria for inclusion and 8 provided data for extraction. Each review evaluated between 8 and 13 tools, in aggregate providing evidence on a total of 28 tools. The quality of the reviews varied and the reporting often lacked sufficient methodological detail for quality assessment. The 28 tools appear to have been studied in a variety of settings and with varied types of patients. The reviews identified several methodological limitations across the original studies. The lack of a 'gold standard' significantly hinders the evaluation of tools' validity. Most importantly, the samples were small providing limited evidence for use of any of the tools across settings or populations. CONCLUSIONS: There are a considerable number of pain assessment tools available for use with the elderly cognitive impaired population. However there is limited evidence about their reliability, validity and clinical utility. On the basis of this review no one tool can be recommended given the existing evidence.

The journey to chronic pain: a grounded theory of older adults' experiences of pain associated with leg ulceration.

This study aimed to develop a grounded theory to describe and explain the experience of pain and its impact, as reported by the individuals who had pain associated with chronic leg ulceration. The Strauss and Corbin grounded theory approach was used. In-depth interviews were undertaken with 11 people aged ≥ 65 years from Leeds in the north of England. All participants were cared for by home care nurses and had painful leg ulceration. The emergent grounded theory centered on a core category of "The journey to chronic pain." The theory suggested a trajectory consisting of three phases that the patient experiences, where the end result is a chronic pain syndrome. In phase 1, leg ulcer pain has predominantly acute nociceptive properties, and if this is not managed effectively, or ulcers do not heal, persistent pain may develop with both nociceptive and neuropathic properties (i.e., phase 2). If phase 2 pain is not managed effectively, patients may then develop refractory long-term pain (phase 3). Those who progress to phase 3 tend to experience negative consequences such as insomnia, depression, and suicidal ideation. Only when health care professionals understand and acknowledge the persistent and long-term nature of the pain in this patient group can the pain be managed effectively.

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Cancer pain management at home (I): do older patients experience less effective management than younger patients?

GOALS OF WORK: We wanted to examine whether older cancer patients living at home experienced poorer pain management than younger patients, and if so, what were the potential explanations for this. MATERIALS AND METHODS: We interviewed 90 new referrals to community palliative care services who were aged 75 years and above or aged 60 years and below. We asked about pain intensity, pain relief and pain quality, access to and type of analgesic medication and, finally, sources of support and self-management strategies. MAIN RESULTS: Older and younger cancer patients who were living at home had very similar experiences of pain, pain relief, access to and use of analgesia, contact with health care professionals and use of additional pain management strategies. As a whole, participants had more frequent contact with family members, community nurses and pharmacists than with general practitioners. CONCLUSIONS: In this sample, the experience and management of pain in older cancer patients was no different from that in younger patients. This suggests that delivering improvements in cancer pain management in the community is appropriate for all age groups. In addition, focussing efforts on patients, carers and non-medical health care professionals may prove to be the most successful strategy.

Cancer pain management at home (II): does age influence attitudes towards pain and analgesia?

GOALS OF WORK: Older patients experience a higher prevalence of pain, including cancer pain, than other age groups and tend to receive poorer pain management. The reasons for unnecessary suffering resulting from pain among older patients are not well understood. This study aimed to identify barriers to cancer pain management for older patients living at home and to compare these with a younger control group. PATIENTS AND METHODS: Patients newly referred to community-based palliative care services were interviewed about their pain and related issues. Data included pain impact (BPI), mood (HAD), health (EuroQol), and barriers to reporting of pain and analgesic use (Barriers Questionnaire). MAIN RESULTS: Fifty-eight patients aged 75 or over and 32 people aged 60 or under were interviewed. Both groups reported that beliefs about the use of analgesics was the greatest barrier to effective pain management. Older patients reported that beliefs about the use of analgesics and communicating with medical staff were significantly more important barriers to pain management than for younger patients. Overall, factors such as communication with medical staff and fatalism were ranked lower than barriers related to medication. Younger patients reported significantly greater sleep disturbance due to pain and greater anxiety. CONCLUSIONS: Older age appears to influence attitudes towards pain and analgesia. Factors such as poorer knowledge about taking analgesia, reluctance to communicate with medical staff, poorer performance status, and being more likely to live alone suggest that older patients may require greater support in the management of their cancer pain than younger patients. Targeted interventions are needed to test this proposition.

Primary angioplasty for heart attack: mismatch between expectations and reality?

AIM: This paper is a report of a study to explore patients' experiences of primary angioplasty and assess their illness perceptions during early recovery. BACKGROUND: Primary angioplasty is recognized as the gold standard treatment for patients with ST elevation myocardial infarction, yet little is known about patients' experiences of this treatment. Recent policy change has emphasized the need for clinical practice to be more patient-centred. One way to achieve this is to understand patients' experiences of treatment better. METHOD: A mixed methods exploratory study was carried out in 2006-2007 with a purposive sample of 29 patients. Data were collected 3-12 days after hospital discharge using (a) semi-structured interviews to explore participants' experiences and (b) The Illness Perception Questionnaire to evaluate illness perceptions. Interview data were analysed using the Framework approach. Questionnaire data were used to inform the qualitative findings. FINDINGS: Participants were very positive about their treatment but experienced considerable emotional shock, which was exacerbated by the speed with which events occurred. Patients' experiences were characterized by a mismatch between their expectations and reality. Questionnaire data supported the notion that they experienced difficulty in 'making sense' of their condition in a coherent way. They tended to see their condition as 'acute' rather than 'chronic' and their treatment as curative. CONCLUSION: Patient education should include focused discussions addressing the 'mismatches' that may occur between their expectations and reality. In this way, a more coherent understanding can be promoted, with greater awareness of heart disease as a long-term condition requiring ongoing self-management.

The impact of neuropathic pain on relationships.

AIM: This paper is a report of a study exploring the impact of neuropathic pain on family, social and working relationships among patients at a pain clinic serving a large urban area. BACKGROUND: Neuropathic pain is a particularly distressing type of chronic pain which is extremely difficult to manage successfully. It produces a range of unpleasant symptoms and adversely affects patients' quality of life, but little is known about its personal impact. METHOD: A descriptive and exploratory approach was used and 10 participants participated in three focus groups in 2005. Because of the low response rate of 20% from the initial sample, a second sample of 16 patients was invited to participate. However, only one person responded and therefore it was not possible to convene an additional group. FINDINGS: The unpleasant and bizarre nature of neuropathic pain underpinned much of its impact in terms of respondents' difficulties in maintaining a range of relationships. For closer relationships, key difficulties centred on the reduction in quality and/or number of personal relationships. For more distant relationships and those with professionals, frustration at the invisibility of their pain and their own failure to communicate symptoms and its consequences were central. CONCLUSION: More extensive work is needed to improve our understanding of how neuropathic pain is experienced, how it affects close and more distant kinds of relationships, and how healthcare professionals might best support people with persistent neuropathic pain to maintain personal and social relationships, and to communicate their pain effectively.

Experiencing cancer in old age: a qualitative systematic review.

Our purpose in this study was to find, report, and interpret the results of qualitative studies which investigated the experiences of older people living with cancer. We conducted systematic literature searches, identified and extracted the findings from 11 studies, and analyzed them systematically. We interpreted the findings to suggest that living with cancer in old age is to live in a perpetual state of ambiguity. The experience is characterized by a sense of disintegration, diminished identity, suffering, and social retraction. These experiences are balanced by sources of comfort and strength found within the self and among diverse relationships. The results of our study illuminate the complex, multidimensional character of living with cancer in old age. They show that older people living with cancer are resilient as well as vulnerable. We argue for changes in attitudes and behavior that will enable health care professionals to foster older peoples' resilience.

Impact of Chronic Pain on Patients' Quality of Life: A Comparative Mixed-Methods Study.

BACKGROUND: Chronic pain has become a common problem within primary care and can negatively impact patients' lives. OBJECTIVE: To assess and explore the impact of chronic pain on patients' quality of life (QoL) using quantitative and qualitative data, respectively. METHODS: A convergent parallel mixed-methods design was used. Chronic pain patients were recruited from a community-based pain clinic located in the North of England. Quality of life was assessed using Short-Form 36 version 2. Quality of life data were also extracted from the Third Oxford and Lifestyles Survey and Welsh Health Survey to allow comparison of QoL of chronic pain patients with that of the general population and patients with long-term conditions. Qualitative interviews were conducted face-to-face using a semistructured topic guide. Quantitative data were analyzed using SPSS version 24 and qualitative data were analyzed thematically. RESULTS: Seventy-nine patients participated in the quantitative phase. The mean (standard deviation) age was 46.5 (14.5). Lower back (54; 68.3%) followed by lower limb were the most common pain sites. Compared with the general population and patients with long-term conditions, chronic pain patients had significantly lower mean QoL scores across all domains of SF-36 (All P < .05). Six themes emerged from qualitative data: interference with physical functioning, interference with professional life, interference with relationships and family life, interference with social life, interference with sleep, and interference with mood. CONCLUSION: The multidimensional negative impact of chronic pain leads to poorer QoL among patients with chronic pain compared to the general population and patients with other long-term conditions.

The information needs of patients treated with primary angioplasty for heart attack: an exploratory study.

OBJECTIVE: As early recovery is a challenging period for cardiac patients who frequently have 'unmet' health information needs, the objective of this study was to explore the information needs of patients treated with primary angioplasty for heart attack. METHODS: Qualitative methodology using semi-structured interviews with 29 patients recruited from a specialist English Cardiology centre, 3-12 days after discharge from hospital. Framework analysis techniques were used to synthesise findings. RESULTS: Participants were generally satisfied with the way in which health information was provided. The need for more specific information about the risk of recurrence, the level of heart muscle damage, discharge medications, appropriate levels of physical activity and diet was highlighted. There was no clear preference for informant and preferences for the timing of information delivery varied considerably. CONCLUSION: Health information provision was satisfactory for most but could be improved by the closer matching of patients' preferences with provision. The shortened hospital stay, rapid throughput and emotional shock experienced by patients influenced their ability to absorb information making the optimum timing for health information delivery variable. PRACTICE IMPLICATIONS: Current guidelines about the provision of health information for patients recovering from heart attack may need to be reviewed to reflect the recent technological advances in treatment. One approach may be to better 'stage' information to reflect patients' priorities. Home visits by specialist nurses may need to be scheduled earlier to improve continuity of care and address information 'gaps'.

A feasibility study of a combined nurse/pharmacist-led chronic pain clinic in primary care.

Chronic pain is common and management hampered by lack of resources in primary and secondary care. Nurse- or pharmacist-led clinics have been shown to lead to improvements in care for patients with chronic pain. This study showed that a combined nurse/pharmacist-led clinic for managing chronic pain in primary care can lead to improvements in management of pain, reduction in use of secondary care resources and high rates of satisfaction.