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OBJECTIVES: To explore the supportive care needs of cancer survivors, the characteristics of patients with high levels of unmet need, changes in unmet need after treatment ends and differences in unmet needs of breast, colorectal and testicular survivors. METHODS: The method used was a prospective longitudinal mailed survey. Unmet needs, measured by 25-item modified Cancer Survivors Unmet Needs survey at baseline (immediately post-treatment) and 8 months later, were analysed descriptively. RESULTS: Of 434 breast, 186 colorectal and 75 testicular patients responding at baseline, 56.2%, 65.6% and 50.7%, respectively, had no unmet needs, the top decile having ≥10 (breast) or seven (colorectal and testicular) different needs and seven different unmet needs. The most frequently reported unmet need (all groups) was fear of cancer recurrence. Unmet needs fell significantly at 8 months for breast patients. Some patients reported new needs. Needs were lowest amongst colorectal survivors and differed between the three groups. Higher levels of unmet needs (breast and colorectal) were associated with having had chemotherapy. CONCLUSION: Most survivors reported few unmet needs, but a small proportion have persisting or emerging needs. Routine or regular monitoring of unmet needs is required so that healthcare professionals can deliver personalised care based on individual needs, preferences and circumstances.
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Sobreviventes de Câncer , Neoplasias Colorretais , Neoplasias Testiculares , Neoplasias Colorretais/terapia , Necessidades e Demandas de Serviços de Saúde , Humanos , Estudos Longitudinais , Masculino , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários , Sobreviventes , Neoplasias Testiculares/terapiaRESUMO
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.
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Analgésicos/administração & dosagem , Analgésicos/uso terapêutico , Dor do Câncer/tratamento farmacológico , Cuidadores/psicologia , Adesão à Medicação/psicologia , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
BACKGROUND: Older 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. METHODS: Comparative 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. RESULTS: 33 (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. CONCLUSION: Obtaining 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.
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Cuidadores , Medicina de Família e Comunidade/organização & administração , Pesquisa sobre Serviços de Saúde/métodos , Participação do Paciente , Seleção de Pacientes , Assistência Terminal , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Continuidade da Assistência ao Paciente , Serviços de Saúde para Idosos , Humanos , Entrevistas como Assunto , Neoplasias/psicologia , Cuidados Paliativos , PesquisadoresRESUMO
The percentage of women working regular nightshift work has increased in the past decade. While nightshift work has the potential to exert adverse effects on dietary habits, little is known about the impact of a parent working nightshifts on dietary habits in the family. We analysed energy intake, meal timing, and diet quality among dependent children and male partners of 20 female UK National Health Service (NHS) nurses working rotational nightshifts. Comparing nightshift against non-nightshift conditions, we hypothesised that maternal nightshift work would affect the evening energy intake, diet quality and time of eating of dependent children and adult partners. Primary outcomes were absolute energy intake and the proportion of daily energy intake consumed in the evening (16:00-23:59 h). Our results show that in pre-teen children aged 8-12 years (n = 13, mean ± SD, 9.9 ± 1.6 yrs; 9 males), the proportion of total daily energy intake consumed during periods of nightshift work was significantly greater compared to periods of non-nightshifts (45.7% ± 8.8% vs. 39.7% ± 7.0%, mean ± SD, p = 0.012). There was no effect of nightshift work on dietary habits in teenage children or partners. The finding of a greater proportion of daily energy consumed in the evening period in pre-teen children is noteworthy, as it suggests that pre-teen children more dependent than older teenage children may be more vulnerable to disruptions to dietary patterns associated with maternal nightshift work.
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Nightshift work is associated with adverse health outcomes, which may be related to eating during the biological night, when circadian rhythms and food intake are misaligned. Nurses often undertake nightshift work, and we aimed to investigate patterns of energy distribution and dietary intake across 14 days in 20 UK National Health Service (NHS) nurses working rotational shifts. We hypothesised that the proportion of daily energy consumed during the nightshift would increase over consecutive nights. Primary and secondary outcome measures included intakes of energy and macronutrients. Our results show that nurses consumed the same total daily energy on nightshifts and non-nightshifts, but redistributed energy to the nightshift period in increasing proportions with a significant difference between Night 1 and 2 in the proportion of total daily energy consumed (26.0 ± 15.7% vs. 33.5 ± 20.2%, mean ± SD; p < 0.01). This finding indicates that, rather than increasing total energy intake, nurses redistribute energy consumed during nightshifts as a behavioural response to consecutive nightshifts. This finding informs our understanding of how the intake of energy during the biological night can influence adverse health outcomes of nightshift work.
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Ritmo Circadiano/fisiologia , Dieta , Ingestão de Alimentos/fisiologia , Metabolismo Energético/fisiologia , Comportamento Alimentar , Enfermeiras e Enfermeiros , Saúde Ocupacional , Jornada de Trabalho em Turnos , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Jornada de Trabalho em Turnos/efeitos adversosRESUMO
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.
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Dor do Câncer/tratamento farmacológico , Cuidadores , Conduta do Tratamento Medicamentoso , Educação em Saúde , Conhecimentos, Atitudes e Prática em Saúde , HumanosRESUMO
BACKGROUND: Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients' perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care. AIM: This paper explores the meanings of family caring for care recipients by drawing on older adults' perspectives about the impact of hospital admission on established family caring relationships. DESIGN: Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design. SETTING: Interviews were conducted in older adults' place of residence in northwest England between June 2009 and July 2010. PARTICIPANTS: Participants were 27 older adults living with heart failure (n=13) or lung cancer (n=14), aged 69-89 years (mean 79 ± 4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions. FINDINGS: For community-dwelling older adults, family carers are conceptualised as 'conductors'; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults' hospital admission, family carers find themselves in the role of 'second fiddle', their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients' behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults' wellbeing across settings. CONCLUSIONS: Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults.
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Cuidadores , Hospitalização , Admissão do Paciente , Idoso , Idoso de 80 Anos ou mais , Inglaterra , Feminino , Insuficiência Cardíaca/terapia , Humanos , Neoplasias Pulmonares/terapia , Masculino , Medicina EstatalRESUMO
AIM: To understand patients' perspectives on how a diagnosis of a life-limiting illness was first communicated to them. STUDY DESIGN: In-depth qualitative interviews with 50 people ranging in age from 30 to 93 years, diagnosed with cancer (31), heart failure (13), stroke (three) or neurological conditions (three) and thought by the responsible health professional to be in the last year of life. Participants from two areas of Northern England were recruited through specialist nurses or hospital consultants and interviewed in their current place of residence. Transcribed data were analysed using Framework. RESULTS: Patients were most likely to recall the pace and clarity with which bad news was conveyed. A direct approach was most common, without much prior warning for the patients. Direct information was usually received well when the patient knew the health professional and when it had been suggested that the patient should be accompanied to the appointment. Some professionals did work to set the scene for the eventual news, with a gradual build-up of information, and narrowing down of options. This approach was perceived as appropriate and sensitive. People with heart failure had engaged in much less discussion about their condition, and most did not recall a specific conversation with their doctor about their prognosis. CONCLUSIONS: Bad news is not always broken in a sensitive way, despite considerable efforts to address this issue. Relatively minor changes to practice could improve the patient experience: greater preparation, provision of sufficient time in consultations and cautious disclosure for new patients.
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Atitude Frente a Morte , Comunicação , Cuidados Paliativos/psicologia , Relações Médico-Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Doença Crônica/psicologia , Doença Crônica/terapia , Inglaterra , Feminino , Humanos , Entrevista Psicológica , Masculino , Futilidade Médica/psicologia , Pessoa de Meia-Idade , Satisfação do Paciente , PrognósticoRESUMO
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 children's 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.
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Avaliação Geriátrica , Recursos em Saúde/organização & administração , Serviços de Saúde para Idosos/economia , Qualidade de Vida , Seguridade Social/economia , Serviço Social/economia , Idoso , Idoso de 80 Anos ou mais , Envelhecimento/fisiologia , Cuidadores/organização & administração , Atenção à Saúde/economia , Feminino , Necessidades e Demandas de Serviços de Saúde , Serviços de Saúde para Idosos/organização & administração , Humanos , Entrevistas como Assunto , Masculino , Satisfação do Paciente/estatística & dados numéricos , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Medição de Risco , Serviço Social/organização & administração , Reino Unido , Populações VulneráveisRESUMO
CONTEXT: Providing care that is shaped around the needs of patients, carers, and families is a challenge in the last months of life, as moves between home and institutions may be frequent. Despite this, there have been few studies of end-of-life transitions in the U.K. OBJECTIVES: To explore older adults' experiences as they move between places of care at the end of life. METHODS: In-depth qualitative interviews and thematic analysis of the data were performed. Thirty adults aged between 69 and 93 years took part. All were judged by their physicians to be in the last year of life, diagnosed with heart failure (13), lung cancer (14), and stroke (3). Sixteen participants were from the lowest socioeconomic groups. RESULTS: Four themes were identified from the data relating to 1) the prioritization of institutional processes, 2) support across settings, 3) being heard, and 4) dignity. As they moved between different settings, much of the care received by older adults was characterized by inflexibility and a failure of professional carers to listen. Liaison between and within services was not always effective, and community support after a hospital admission was perceived to be, on occasions, absent, inappropriate, or excessive. CONCLUSION: Qualitative study of transitions provides valuable insights into end-of-life care, even in countries where there are few financial barriers to services. This study has highlighted a need for continued attention to basic aspects of care and communication between professionals and with patients.