Sarah Barnes

• BA(hons)
• Lecturer at The University of Sheffield

Aim To reflect on the methodological challenges of conducting a study exploring the effects on quality of life of being an informal carer for a person with palliative heart failure, as well as the factors that influence a carer's perception of caring. Background There are multi-faceted influences on the positive and negative effects of being a care...

Introduction: Older people at the end of life are particularly vulnerable to social isolation and loneliness, the associated health effects of which are significant. Increasingly, charitable organizations are offering befriending services for people at the end of life. However, there is little research evidence around the mechanisms by which befrie...

Malnutrition is a significant cause of morbidity and mortality, particularly among older people. Attention has focused on the inadequacies of food provision in institutions, yet the majority suffering from malnutrition live in the community. The aim of this study was to explore barriers and facilitators to food provision for older people receiving...

Improving the mealtime experience in residential care can be a major facilitator in improving care, well-being and QoL. Evidence suggests that, despite guidance on the subject of food, nutrition and hydration, there are still concerns. Although there is a range of methods to research and assess the quality of food provision, there is a challenge in...

Background Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms...

Well-designed housing is recognised as being an important factor in promoting a good quality of life. Specialised housing models incorporating care services, such as extra care housing (ECH) schemes are seen as enabling older people to maintain a good quality of life despite increasing health problems that can accompany ageing. Despite the variatio...

The study objective was to explore the views of residents and relatives concerning the physical design of extra-care housing. Five focus groups were conducted with residents in four extra-care schemes in England. One focus group was carried out with relatives of residents from a fifth scheme. Schemes were purposively sampled to represent size, type...

Context: The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identif...

  This article is a report of an integrative review to identify key elements of the physical hospital environment for end of life care of older adults and their families as reported by patients, relatives, staff and policy makers.   Globally ageing populations and increases in long-term illness mean that more people will need palliative care in the...

Limited evidence exists relating to key elements of the optimum physical hospital environment for patients receiving palliative and end of life care in acute hospitals. The aim of this study was to explore the perspectives of health professionals regarding the optimum physical environment for palliative and end of life care in the acute hospital se...

The aim of the study was to identify the time experiences of older patients and general practitioners (GPs). Secondary analysis of qualitative data collected from two longitudinal studies, one in the United Kingdom (UK) and the other in New Zealand (NZ), was carried out. The UK study involved interviews with 44 older people with heart failure and n...

EVOLVE is a tool for evaluating the design of housing for older people. It is used to assess how well a building contributes to the physical support and personal well-being of older people. Developed from research into extra care housing, it can be used for a variety of building types, including sheltered housing and individual private houses. The...

The challenges associated with patient-based research in palliative care are well documented. This paper focuses on the ethical challenges and discusses them in the context of a pilot study to explore the palliative-care needs of patients with moderate and severe chronic obstructive pulmonary disease. The main ethical challenge encountered related...

Introduction: Harold Shipman, a general practitioner (GP) working near Manchester in England, is thought to have killed 250 of his patients by diamorphine overdose between 1975 and 1998. Opiates are recommended for relieving dyspnoea in end stage chronic obstructive pulmonary disease (COPD). Little is known about the effect of the Shipman case on c...

Chronic obstructive pulmonary disease (COPD) is a highly prevalent condition worldwide and is associated with significant mortality. This paper gives an overview of the relevant literature regarding care needs in advanced COPD from the perspective of the patient or carer, and aims to explore the appropriateness of a palliative care approach in this...

Prognosis in COPD is poor and many patients perceive shortcomings in the education they receive about aspects of their condition. This study explores the experiences of patients with COPD, particularly fears surrounding death and dying. Semi-structured interviews were conducted with 21 patients with moderate or severe COPD. Findings revealed that p...

The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of...

This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer. Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating...

This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer. METHODS: Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been pa...

Palliative care in the UK has been developed to meet the needs of predominantly middle aged and younger old people with cancer. Few data are available regarding the extent to which services respond to the specific needs of an older group of people with other illnesses. This paper draws on in-depth interviews conducted with 40 people (median age 77)...

To identify factors available to general practitioners (GPs) that are predictive of mortality within a general practice-based population of heart failure patients, and to report the sensitivity and specificity of prognostic information from GPs. Five hundred and forty-two heart failure patients aged >60 years were recruited from 16 UK GP surgeries....

The objective of the present paper is to explore levels of social service provision, the barriers to receiving these services and the experiences of social service provision amongst older people with heart failure. Five hundred and forty-two people aged over 60 years with heart failure were recruited from UK general practices in four areas of the U...

Objectives: To explore dying trajectories in heart failure. Design: Prospective, longitudinal study. Setting: Sixteen GP surgeries in four demographically contrasting areas of the UK. Participants: A total of 27 heart failure patients, >60 years of age, who completed questionnaires for at least five time-points before death. Main outcome measures:...

This study explored the prevalence and burden of symptoms in a community-based sample of patients aged >60 with symptomatic heart failure. Five hundred forty-two patients were recruited from UK general practices. Participants completed the Kansas City Cardiomyopathy Questionnaire every 3 months for 2 years. Data are presented at baseline alongside...

This cross-sectional study aims to establish whether gradation of space and daytime location are associated with quality of life in care home residents, irrespective of dependency. Thirty-eight homes and 452 residents are recruited. Quality of life measures used are as follows: observation of the time residents spent in active behavior and observat...

The objective of this study was to explore the attitudes of older people and primary care professionals towards communication of diagnosis, prognosis and symptoms in heart failure. Forty-four interviews were conducted with people aged > 60 years with heart failure (New York Heart Association III–IV) recruited from general practices in the UK. Ten f...

to explore the characteristics and views of the family carers of older people with heart failure. 213 family carers of heart failure patients >60 years were recruited from UK general practitioner (GP) practices. Carer strain, quality of life (QOL) and service satisfaction questionnaires were completed every 3 months for 2 years, as well as 16 inter...

Current understanding of quality of life in heart failure is largely derived from clinical trials. Older people, women and those with co-morbidities are underrepresented in these. Little is known about factors predictive of quality of life amongst older people with heart failure recruited from community settings. To identify factors predictive of q...

This paper highlights some of the challenges encountered when recruiting older people with heart failure into longitudinal, community-based research. It draws on the experience gained in a study to provide insights into the palliative care needs of older people with heart failure and the timing and need for service interventions. Five hundred and f...

This article was published in the journal, Ageing & Society [© Cambridge University Press] and is available at: http://journals.cambridge.org/action/displayJournal?jid=ASO. Older people living in residential and nursing care homes spend a large proportion of their time within the boundaries of the home, and may depend on the environment to compensa...

Design in Caring Environments is a study of residential care buildings for older people carried out by architects and psychologists from the Universities of Sheffield and Loughborough. The study is a search for evidence that building design influences the quality of life of residents and the quality of care given by staff. Thirty eight care homes w...

Objectives: Older people living in care homes may depend on the environment to compensate for their physical or cognitive frailties. Guidelines on the design of care buildings have accumulated over time with little knowledge of their impact on the quality of life (QoL) of building users. The Design in Caring Environments Study (DICE) sought to dete...

The appropriateness, reliability and convergence of differing methods and associated instruments for the assessment of quality of life and well-being in frail older people was examined in 60 ( S 65 years of age) nursing home residents. The feasibility of measuring quality of life and well-being via a variety of instruments was explored through obse...

There has been little systematic research into the design of care environments for older people. This article reviews empirical studies from both the architectural and the psychological literature. It outlines the instruments that are currently available for measuring both the environment and the quality of life of older people, and it summarises t...