Elizabeth Lowson

A comparison of strategies to recruit older patients and carers to end-of-life research in primary care

BackgroundOlder adults receive most of their end-of-life care in the community, but there are few published data to guide researchers on recruitment to studies in primary care. The aim of this study was to compare recruitment of patients and bereaved carers from general practices in areas with different research network support, and identify challenges in obtaining samples representative of those in need of end-of-life care.MethodsComparative analysis of recruitment from general practices to two face-to-face interview studies concerned with 1) carers’ perceptions of transitions between settings for decedents aged over 75 years and 2) the experiences of older patients living with cancer at the end-of-life.Results33 (15% of invitees) patients and 118 (25%) carers were interviewed. Carers from disadvantaged areas were under-represented. Recruitment was higher when researchers, rather than research network staff, were in direct contact with general practices. Most practices recruited no more than one carer, despite a seven fold difference in the number of registered patients. The proportion identified as eligible for patient interviews varied by a factor of 38 between practices. Forty-four Primary Care Trusts granted approval to interview carers; two refused. One gave no reason; a second did not believe that general practitioners would be able to identify carers.ConclusionObtaining a representative sample of patients or carers in end-of-life research is a resource intensive challenge. Review of the regulatory and organisational barriers to end-of-life researchers in primary care is required. Research support networks provide invaluable assistance, but researchers should ensure that they are alert to the ways in which they may influence study recruitment.

How can we help family carers manage pain medicines for patients with advanced cancer? A systematic review of intervention studies

Background Family carers play a significant role in managing pain and associated medicines for people with advanced cancer. Research indicates that carers often feel inadequately prepared for the tasks involved, which may impact on carers’ and patients’ emotional state as well as the achievement of optimal pain control. However, little is known about effective methods of supporting family carers with cancer pain medicines. Aims To systematically identify and review studies of interventions to help carers manage medicines for pain in advanced cancer. To identify implications for practice and research. Method A systematic literature search of databases (MEDLINE, CINAHL, PsycINFO and AMED) was carried out to identify studies of pain medication management interventions that involved family carers of patients with advanced cancer, and reported specific outcomes for family carers. Patient pain outcomes were also sought. Studies were quality appraised; key aspects of study design, interventions and outcomes were compared and a narrative synthesis of findings developed. Results 8 studies were included; all had significant methodological limitations. The majority reported improvements in family carer knowledge and/or self-efficacy for managing pain medicines; no effect on patient pain outcomes; and no adverse effects. It was not possible to discern any association between particular intervention characteristics and family carer outcomes. Conclusions Current evidence is limited, but overall suggests face-to-face educational interventions supported by written and/or other resources have potential to improve carers’ knowledge and self-efficacy for pain management. Further research is needed to identify how best to help family carers manage pain medicines for patients with advanced cancer.

Funding health and social services for older people - a qualitative study of care recipients in the last year of life

Objectives This study explores the views of older adults who are receiving health and social care at the end of their lives, on how services should be funded, and describes their health-related expenditure. Design Qualitative interview study Setting North West England Participants 30 people aged 69–93 years, diagnosed with lung cancer, heart failure or stroke and judged by health professionals to be in their last year of life. Sixteen participants lived in disadvantaged areas. Main outcome measures Views of older adults on funding of services. Results Participants expressed a belief in an earned entitlement to services funded from taxation, based on a broad sense of being a good citizen. Irrespective of social background, older people felt that those who could afford to pay for social care, should do so. Sale of assets and use of childrens inheritance to fund care was widely perceived as an injustice. The costs of living with illness are a burden, and families are filling many of the gaps left by welfare provision. People who had worked in low-wage occupations were most concerned to justify their current acceptance of services, and distance themselves from what they described as welfare ‘spongers’ or ‘layabouts.’ Conclusions There is a gap between the health and social care system that older adults expect and what may be provided by a reformed welfare state at a time of financial stringencies. The values that underpinned the views expressed – mutuality, care for the most needy, and the importance of working to contribute to society – are an important contribution to the debate on welfare funding.

Supporting carers to manage pain medication in cancer patients at the end of life: A feasibility trial

Background: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. Aims: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients’ carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. Design: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants’ experiences of Cancer Carers Medicines Management and trial procedures. Setting: Community settings in two study sites. Participants: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. Results: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. Conclusion: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers’ management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.

Inter-professional relationships: an overlooked influence on end of life transitions for older adults: a qualitative study in England

The objective of the EVIDEM-EXERCISE study was to evaluatethe effectiveness of an exercise regime as a therapy for the behaviouraland psychological symptoms of dementia (BPSD). A pragmatic, ran-domized, controlled, single-blind, parallel-group trial of a dyadic exer-cise regime (tailored walking) for community-dwelling individuals withBPSD and their carers was undertaken. The primary outcome wasBehavioural and Psychological Symptoms as measured by the Neuro-Psychiatric Inventory at week 12. Results show no significant differ-ence of NPI score at week 12 between the group receiving the dyadicexercise regime and those that did not. Secondary outcome measure ofcaregiver’s burden was significantly improved; caregiver burden dou-bled by week 12 for the control group participants, but decreased forthose receiving the exercise intervention. In conclusion, this study foundthat regular simple exercise does not improve BPSD but did seem toattenuate changes of caregiver burden.Studies about intimacy in old age have mostly focused on institutionalized life-long marriages. Little research has focused on re-partnering in later life and the impact these relationships have on life satisfaction. Framed by Giddens’ Transformation of intimacy and Laslett’s Third age, as well as changing social and demographical conditions, this paper focuses on how different forms of new intimate relationships impact on life satisfaction in later life. Qualitative interviews were conducted with a strategic sample of 28 Swedes, 63–91 years, who were married, cohabiting and living apart together in new intimate heterosexual relationships initiated after the age of 60 or who were currently dating. The results showed the significance of new intimate relations the experience of life satisfaction in later life: The importance of being needed and confirmed by one’s partner, for intimacy and sexuality, for unloading children’s care responsibility, for sharing experiences in everyday life and for safety. The results also showed the importance of the partner as a resource for new experiences and a healthier life style. In conclusion, the results will be theorized in a time frame: First, in the light of new post (re)productive free time in the third age. Second, in the light of the finite remaining life-time. The results from the qualitative study will be contextualized by results from a representative survey on intimate relations among 3 000 60-90 year old Swedes (data collection has just finished).It is often argued that in late modernity sex has escaped its reproductive cage and people form pure relationships, based on mutual satisfaction. Ironically, although older people are per definitio ...

RECOGNISING THE INFLUENCE OF INTER-PROFESSIONAL RELATIONS ON END OF LIFE CARE TRANSITIONS: VIEWS OF BEREAVED CARERS AND PROFESSIONALS

Introduction The end-of-life care needs of older adults with multiple conditions are complex and involve a range of professionals working in different settings. This study focuses on transitions, as vulnerable points in care pathways experienced by a high proportion of the older population at the end of life. Aims and Methods To understand how inter-professional relations influence transitions between settings for older adults at the end of life. Methods In-depth qualitative interviews with 118 caregivers of decedents aged 66–98 years, who had died with heart failure, chronic obstructive pulmonary disease, stroke, selected cancers; 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services in England. Results Carers regretted that communication and handovers between professionals did not always take place where they felt them to be necessary, and perceived frequent, repeated assessments and interventions to be the consequence. Families felt compelled to take responsibility themselves and fill gaps left by deficiencies in inter-professional communication and working. Professionals described stereotypical divisions between health and social care, with differences in culture, language and approaches to patients or clients. The dominance of the medical model in end of life care was perceived to be unhelpful in creating close working relationships between health and social care. The impact of inter-professional tensions on patients and families went unacknowledged by staff. Conclusions Inter-professional relationships are an important influence on patient and family experiences of end of life care. It may be an overlooked source of inequity.

How to be a 'good carer'? Perspectives on older adults' end of life care from family carers and health and social care professionals

Aims: Pain and other physical symptoms remain prevalent inthe palliative care population, and outcomes are not alwaysoptimal. Assessment, monitoring, medicines management,evaluation and collaboration are key nursing roles that mayhave a positive impact. Whether and how nurses enact theseroles is not well understood. This study aimed to investigatethe role of the community nurse in palliative care provision,with a particular focus on observational exploration of theirrole and practice in providing patient care.Methods: A longitudinal qualitative ethnographic design,comprising observation of community nurse/palliative carepatient/carer encounters over time, and post observationinterviews with patients, carers and nurses. Patients weresampled from 12 community team caseloads across threeprimary care organisations. Observations and interviewswere audio-recorded and transcribed. Iterative data analysiscomprised familiarisation, coding and categorisation usingtechniques of constant comparison to generate typologiesof concepts. The study received all necessary ethics andgovernance approvals.Results: 17 nurse/patient encounters were observed (n=11 patients, 8 nurses) with 23 post observation interviews(11 nurse, 12 patient/carer). The discussion of physicalsymptoms, especially pain, formed the core of eachobserved encounter. Nurses primarily focused on medicinesmanagement (dose, frequency, suitability), other approachesto symptom management were infrequent. Nurses wereskilled at using informal conversational assessment styles,but the non-use of formal assessment tools could narrowthe range of issues assessed. Nurses discussed the complexinterplay between physical, psychological and socialsymptoms, but this was not always reflected in care.Conclusion: Symptom management is integral tocommunity nurses work, but there is scope to improve theway this is conducted which could have a positive impacton patient outcomes.Aims: Mixed method research is valuable for complexintervention development and evaluation in palliative andend of life care (P&EoLC) yet we lack guidance on addressingthe challenges of using it in this field. Thus we soughtto identify agreed best practice.Methods: We used the MORECare Transparent ExpertConsultation approach in a workshop with literatureidentifiedexperts in mixed methods and P&EoLC research.Delegates (n=33) heard overviews of challenges in mixedmethods and P&EoLC research. Following discussion,nominal group techniques produced candidate recommendationswhich were de-duplicated and synthesised into 9draft recommendations. These were rated online by workshopdelegates and MORECare advisory group. Descriptivestatistics analysed agreement ratings. Narrative commentswere collected.Results: Highest agreement was with the need to considerrespondent burden given the population in P&EoLC. Mixedmethod research was recommended as useful givenP&EoLC?s outcome measurement challenges. It was recommendedthat trial registers include qualitative componentfields and that implementation studies be encouraged.Further, multi-disciplinary research teams were recommendedand qualitative exploration of respondent participationexperience given the relative infancy of P&EoLCresearch. The need for researcher skill-sets addressing bothmixed method needs and P&EoLC sensitivities wasacknowledged. Awareness of potential therapeutic effects(contamination) from research interviews in interventiontrials was important, as was consideration of theoreticalperspectives from the outset.Conclusions: This is the first attempt to produce guidanceon mixed methods that addresses challenges P&EoLCresearch can present. When designing studies researchersshould consider the expert recommendations. Publicationof these recommendations may encourage uptake andadvance appropriate use of mixed methods in the field.