Experiences Of Caring For People Research Articles

Tensions and ambiguities: A qualitative study of final year adult field nursing students' experiences of caring for people affected by advanced dementia in Wales, UK

Rising dementia prevalence means that general nurses globally will encounter more people affected by advanced dementia. Advanced dementia care is profoundly complex yet there is a paucity of research exploring how general nursing students experience and thus learn to care for those affected. To explore final year nursing students' (adult field) experiences of caring for people affected by advanced dementia. A qualitative design was adopted. The setting was Wales, UK. Eleven final year nursing undergraduates (adult field). Data were collected using digitally recorded one-to-one in-depth interviews in 2013 and analysed using thematic analysis. Participants' experiences fell within three main themes: they can be quite challenging; a lot of dementia patients are seen as hazards and it's not all about doing stuff. Participants aspired to person-centred care. However, they felt insufficiently prepared for what they believed was knowledgeable work requiring interpersonal competence and confidence. Participants appreciated that many practitioners, their clinical educators, were insufficiently prepared for advanced dementia care. The study provided further evidence of the complexity of caring for those with advanced dementia and associated theory, practice and policy gaps. There are important implications for education in terms of curriculum development and learning from and in practice.

Stigma and disclosure as barriers to regular dental care for people living with HIV/AIDS in Kwazulu-Natal and Western Cape, South Africa

Purpose – The purpose of this paper is to determine the oral health care experiences of people living with HIV in Kwazulu-Natal (KZN) and the Western Cape (WC) and also to identify the role of stigma and discrimination in the oral health care experiences for people living with HIV in KZN and the WC. Design/methodology/approach – This study was a survey among HIV-positive people attending selected Community Health Centres and regional hospitals, HIV clinics in KZN and WC provinces in South Africa. The sample consisted of people living with HIV that were 18 years or older and who had given written, informed consent. A cross-sectional study structure has been employed using a standardized format using a semi-structured interview and an administered questionnaire to collect data. The study classified participants as living in metropolitan or non-metropolitan areas. Findings – Apprehension of loss of confidentiality, stigma and discrimination were the barriers that deterred participants from seeking care. Respondents stated that they feared what the dentist and staff would think of them being HIV positive and feared being discriminated against by the dentist and staff. In some instances there appears to be a difference between policy and practice regarding the oral health care needs of and services rendered to people living with HIV in public health facilities as there are still patients who do not obtain care and for whom the attitudes of the health care provider constitutes the major barrier to accessing that care. Research limitations/implications – The results are specific to KZN and WC and have to be extrapolated with caution to the rest of South Africa. Additionally, this study did not have a control group of HIV-negative people which would have enabled one to determine whether certain barriers were unique to people living with HIV. Practical implications – To make recommendations with respect to addressing the issue of stigma and discrimination in the oral health care experiences for people living with HIV in KZN and the WC as there is a definite need for the government to address the resource needs of rural areas and less developed areas of South Africa. Health care is a much-needed resource in these high prevalence areas and governments must ensure that all their HIV/AIDS projects and policies should have a rural component built into them. Social implications – This study emphasizes the importance of embracing people that are being discriminated and marginalized by society such as people living with HIV to ensure that they feel a franchised member of society who can take the initiative to be in control of their own health and, with the necessary aid from public resources and societal support, join forces to reduce the public health burden and its impact on the socio-economic milieu. Originality/value – To the best of the author's knowledge, there is no other study that has compared differences in the use of oral health care services by people with HIV in South Africa and these results serve as an indication of some the important issues in this regard.

The Warwick Patient Experiences Framework: patient-based evidence in clinical guidelines

This paper presents the development of the Warwick Patient Experiences Framework (WaPEF) and describes how it informed the development of the NICE Guidance and Quality Standard, 'Patient experience in adult NHS services: improving the experience of care for people using adult NHS services'. The WaPEF was developed using a thematic qualitative overview that utilized a systematic review approach. Search strategies were developed, inclusion and exclusion criteria developed and data extracted from papers. The WaPEF identifies seven key generic themes that are important to a high-quality patient experience: patient as active participant, responsiveness of services, an individualized approach, lived experience, continuity of care and relationships, communication, information and support. The WaPEF is the first patient experiences framework with an explicit link to an underpinning patient evidence base, linking themes and sub-themes with specific references. The WaPEF informed the structure and content of the NICE Patient Experiences Guidance. The guidance, published in February 2012, will form a key part of the NHS Outcomes Framework in the UK for the future evaluation of health and social care. The proposed framework could be adapted to other country contexts and settings.

Improving the experience of care for people living with HIV

Some 30 years have passed since the identification of the human immunodeficiency virus (HIV). During this time, there have been immense strides made in the provision of high-quality and effective care, and there are clear improvements in clinical outcomes and the health and well being of those people living with HIV. People with HIV are living longer. The health care assistant and assistant practitioner (HCA and AP) have a central role to play as members of the health and social multidisciplinary care team in improving the health and well being of people who are living longer with HIV. Despite the advances in care provision (often against a backdrop of financial constraints), there is more that can be done to help people with HIV. This article provides an overview of the standards of care for people living with HIV. An awareness of the standards of care can help the HCA and AP offer care that is patient centred and effective.

The development of PIECE-dem: Focusing on the experience of care for people with living with advanced dementia

PIECE-dem is an observational process for researchers reflecting on the lived experience of people with advanced dementia in care homes. The development utilised literature review, discussions with people with dementia, families and practitioners. It was refined over successive practice trials.

Asthma: standards of care

In February 2013, the National Institute for Clinical Excellence (NICE) published a quality standard on the diagnosis and treatment of asthma in adults, young people and children aged 12 months...

Caring for people with dementia disease (DD) and working in a private not‐for‐profit residential care facility for people with DD

Caring for people with dementia and working in dementia care is described as having both rewarding and unpleasant aspects and has been studied to a minor extent. This study aims to explore care providers' narrated experiences of caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD. Nine care providers were interviewed about their experiences, the interviews were recorded, transcribed and analysed using thematic analysis. The analysis revealed that participants were struggling to perform person-centred care, which meant trying to see the person behind the disease, dealing with troublesome situations in the daily care, a two-edged interaction with relatives, feelings of shortcomings and troubled conscience, and the need for improvements in dementia care. The analysis also revealed an ambiguous work situation, which meant a challenging value base, the differently judged work environment, feelings of job satisfaction and the need for a functional leadership and management. The results illuminate participants' positive as well as negative experiences and have identified areas requiring improvements. It seems of great importance to strive for a supportive and attendant leadership, a leadership which aims to empower care providers in their difficult work. Using conscience as a driving force together in the work group may benefit care providers' health.

A summary of the development of the NICE Patient experience in adult NHS services guidance and quality standard with a perspective of its relevance in a Canadian context

Background: In the United Kingdom patient experience is being established as a key determinant in informing commissioning decisions and in shaping healthcare delivery. This led to the publication of the National Institute for Health and Clinical Excellence (NICE) guidance on patient experience in adult National Health Service (NHS) services: improving the experience of care for people using adult NHS services (CG138) in February 2012. Purpose: To develop guidance and a quality standard for NICE on patient experience in adult NHS services. Methods: Guidance development by a multidisciplinary group using multiple evidence sources, distilled into five key themes of patient experience. Results: Guidance including sixty recommendations, and a quality standard, developed from the synthesis of multiple sources of information. Conclusion: This guidance has international applicability particularly in Canada.

A grounded theory longitudinal study of carers’ experiences of caring for people with dementia

Introduction Increasingly the provision of care for older people with dementia has shifted from institutions to the community. This has resulted in an increase in burden and a reduction in autonomy for those who care for these individuals. Aims This study sought to identify, describe and explore the changes in the carers’ experiences of looking after a relative living with dementia, and the effects of caring on the carers’ autonomy and health over time. Research Methods A longitudinal, grounded theory approach in three phases was used. In-depth interviews were conducted with six spouses at the beginning, at six months and at eighteen months. A constant comparative analysis of taped and transcribed interviews was used. Findings Four categories emerged: My Life Changed, Commitment, Responsibility and Duty, and Support. The core category My Life Changed was identified as representing the beginning of the caregiving journey; and the learning from experience that occurred as a consequence of that journey, offering a new perspective on the experience of carers. Commitment refers to a deepened and sustained element; Responsibility and Duty increases over time and finally Support refers to the fluctuating nature of help provided by formal and informal sources. All participants experienced changes in the caregiving journey; the degree and nature of necessary adaptations varied. Conclusions A Theory of Caring emerged, but what changes were experienced did not appear to conform to any fixed pattern. All carers learned by experience to manage their situations. For all carers their autonomy and health was challenged.

Caring for people at the end of life: Iranian oncology nurses' experiences.

Aim:To explore the meaning of Iranian oncology nurses' experiences of caring for people at the end of life.Materials and Methods:A phenomenological hermeneutic approach was applied. Fifteen nurses working in oncology units were interviewed in 2007 regarding their experiences of caring for people at the end of life.Results:Participants experienced caring for people at the end of life as sharing space and time to be lost within an organizational context. This main theme was divided into three subthemes including being attentive to the dying persons and their families, being cared for by the dying persons and their families, and being faced with barriers.Conclusion:The study suggests that the nurses' success in caring for people at the end of life is reliant on their interpersonal caring relationship. Facilitating such relationship requires the establishment of palliative care unit, incorporation of palliative care into undergraduate nursing studies, and cultural preparation through public education.

A theory to guide families and carers of people who are at risk of suicide

The aim of this study was to explore family members' and ex-patients' perceptions of caring for people who had previously attempted suicide. Suicide is a major public health problem in Taiwan. Official figures demonstrate that suicide was one of the top 10 causes of death in the last eight years, with 18.8 per 100,000 people taking their own lives in 2005. The Taiwanese Government has set targets to reduce this rate. All members of the population play a role in the prevention of suicide, including families and carers of those at risk. Evidence is sparse on the role that families take in caring for members who have been discharged from hospital following a suicide attempt. Grounded theory using one-to-one tape-recorded interviews were conducted with patients who had just been discharged from hospitals following a suicide attempt (n = 15) and family members (n = 15). Data were analysed using open, axial and selective coding. The core category that emerged was 'Impending burnout', depicting family members' experience of caring for people who had attempted suicide. Other key categories linked to and embraced within this core category were: on guard day and night, maintaining activities of daily living and creating a nurturing environment. Families and carers could use the emergent theory as a guide to caring for people at risk of suicide. Psychiatric nurses could use the theory as a framework to educate family members on enhancing the quality of care provided to this group of people. The theory could go some way towards reducing suicidal attempts and decreasing re-hospitalisation rates. The finding indicated that family members experienced difficulties when caring for those who had previously attempted suicide. Consequently, nurses have a pivotal role in educating families and carers on preventive strategies before suicidal patients are discharged from hospitals.

Educational needs of nurses when nursing people of a different culture in Ireland

Over the last 10-15 years, there has been a dramatic change in the population of the Republic of Ireland (ROI). Because of strong economic growth, a buoyant economy and universal population migration, the ROI has moved from a mono to a multicultural society over a relatively short period of time. Therefore, nurses in this state have limited experience of caring for people of a different culture. To discuss registered nurses' experiences in the ROI of nursing people from a different culture. The study design was qualitative and participants were purposively sampled (n = 7). Data was collected through semi-structured interviews and thematically analysed. The main themes to emerge from the interviews were: dealing with cultural issues in practice; accessing and using the interpreter service; planning and taking action to improve nursing care for patients from a different culture. Support and education is needed by nurses to improve nursing care of people from a different culture. Recommendations for practice are to: develop transcultural nursing education; promote an ethos of providing culturally competent and culturally safe nursing to people of another culture; improve resources available to nurses; provide easier access to formal interpreter services with continuity of interpreters for patients and conduct further research into aspects of health care in multicultural Ireland.

The meaning of caring for people with malodorous exuding ulcers

This paper is a report of a study to illuminate the meaning of caring for people with malodorous exuding ulcers. Managing ulcers is complicated and consensus on assessment and treatment difficult to reach. Nurses need knowledge and skills to provide good care. They must stay close and be exposed to contamination and suffering. They must provide care without violating patients and we need to further explore this challenge. A convenience sample of ten participants was recruited. Participants had experience of caring for people with malodorous exuding ulcers and were employed in primary health or hospital care in Sweden. Narrative interviews were conducted during late 2002 to early 2005 and interpreted using a phenomenological-hermeneutic method. Themes were formulated: 'Facing the wound' when nurses reveal what is meant to be concealed and perceive patients' vulnerability; 'Facing one's own defencelessness' when feeling invaded, helpless and ashamed; 'Struggling to shield one's own defencelessness' was achieved by striving to be in control, striving to endure and seeking a way out. 'Struggling to shield patients' vulnerability' was about alleviating patients' additional suffering by striving to spare patients, pushing boundaries, making uncomfortable decisions and sharing togetherness. When failing to shield their own defencelessness and patients' vulnerability, nurses run the risk of experiencing desolation. Physical proximity and bodily suffering affect nurses. Caring for people with ulcers calls for improved interprofessional cooperation in order to provide the best treatments and care. Further education for these nurses is needed, as well as support from managements and organizations.

The experiences of professionals who care for people with intellectual disability who have substance‐related problems

More people with intellectual disability are living independent lives. They can and do experiment with substances that the wider community try, such as alcohol and drugs (both legal and illicit). Unfortunately for some, they develop problems related to their use of these substances. Face‐to‐face, semi‐structured interviews were conducted with 13 professionals who work in Intellectual Disability Services and Alcohol & Drug Services to discover their experiences of caring for people with intellectual disabilities who hazardously use substances. Although small numbers of people presented to these services, many more people with intellectual disabilities used Intellectual Disability Services for support, rather than their local Alcohol & Drug Services. While the numbers may be relatively small, the challenges this client group pose are very perturbing in relation to their physical, emotional and social health. The professionals reported a lack of education in working with this doubly disadvantaged population. Moreover, policies were absent to guide staff to work collaboratively with this often‐ignored population. These findings are discussed in light of the innovative practices that are occurring in other parts of the UK regarding the recognition, assessment treatment and long‐term management of this population. Intellectual Disability Services and Alcohol & Drug Services need to work more closely together if the needs of this population are to be effectively met.

Proof of love and other themes: a qualitative exploration of the experience of caring for people with motor neurone disease

Background: Motor neurone disease (MND) remains universally fatal despite the introduction of disease-modifying therapy in the form of the glutamate inhibitor, riluzole. Caring for people with MND presents enormous challenges, many of which are particular to the disease complex. An understanding of the carer burden is required in order to inform the delivery of palliative care to MND patients and their carers.Aim: To explore the experiences and perceptions of carers and former carers of people with MND with emphasis on the later stages of the disease.Participants and Methods: Focus groups were conducted with two groups of former carers and one group of current carers recruited through the Motor Neurone Disease Association of NSW. Recruitment continued until no new themes emerged. The discussions were taped, transcribed verbatim and content analysed.Results: There was a clear thematic trajectory from diagnosis through to death and bereavement with ramifications evident for the delivery of palliative care. Unmet emotional needs and the unremitting and all-encompassing nature of care were emphasised, as was the importance of love in sustaining the carer.Conclusions: The experience of caring for a person with MND has a lasting psychological impact which may outweigh the physical and financial costs of care. This relatively unexplored area of enquiry lacks adequate models on which to base quantitative investigation. This qualitative study provides a starting point for future research.

Viewing patient need through professional writings: a systematic 'ethnographic' review of palliative care professionals' experiences of caring for people with cancer at the end of life

Aim: A systematic review of palliative care professionals' written accounts of caring for people with cancer who are knowingly facing death; in order to provide another source of evidence on patients' needs.Methods: Systematic review methodology was utilised to locate published 'reflective narratives' (not original research) written by palliative care professionals from a variety of disciplines and institutional settings, which focused on the experiences of caring for patients with cancer as they approached their death. The search strategy yielded 2224 texts which were reduced to a dataset of 202 after the application of the inclusion/exclusion criteria. A quantitative analysis was conducted on the full data set and a qualitative analysis was performed on a selected sub-sample.Main results: Professionals identify a wide range of needs of people with cancer at the end of life. They write particularly forcefully about: patient autonomy; choice and control; access to information; and full participation in decision-making about patient care. However, closer examination of the texts demonstrates that professionals may also have fixed expectations about: management of patients' emotion; over emphasise choice and control; lack recognition of power in the patient–professional relationship; and tend to homogenise patient needs.Conclusions: The research raises questions about professionals' interpretation of patient needs and suggests that the care received by people with advanced cancer is still firmly framed within biomedical culture and the social organisation of medicine, which struggle to acknowledge individual autonomy and meet the diversity of individual end-of-life needs.

Primary Care Experiences of People with Psychiatric Disabilities: Barriers to Care and Potential Solutions.

This study examined the barriers that 16 focus group participants with psychiatric disabilities confront in obtaining primary care services and their recommendations on improving quality of care. They cited a) difficulty identifying a primary care physician with good empathic and communication skills, b) physicians' misunderstanding of the nature of psychiatric disability, c) inadequate information about the side effects of psychotropic medications, and d) costs due to inadequate insurance coverage. In addition to suggestions for improving patient-physician communication and expanding physician knowledge, participants emphasized strategies to become empowered in their relationships with physicians and to obtain personal support.

Meeting the needs of minority ethnic patients.

Certain aspects of nursing care related to minority ethnic patients are being highlighted in the literature, but there is little exploration of nurses' experiences of caring for people from specific minority ethnic groups. This paper reports an investigation into the experiences of Registered Nurses caring for hospitalized Pakistani patients in the United Kingdom. A qualitative study, with a sample of 30 Registered Nurses using semi-structured interviews. The sample was self-selecting from a large health care organization in the north of England, covering adult acute, critical and rehabilitation care settings. Interviewees had difficulty in explaining the meaning of culture and spirituality and their relationship to nursing practice. They also had limited understanding of the Pakistani community, and deficits were identified in meeting the challenges offered by this community. Inadequate implementation of 'holism', poor preparation to meet the needs of an ethnically diverse society and the presence of racism in practice settings emerged as explanations for the deficits participants identified between their expectations and the reality in care settings. Although 'holism' is a relevant concept for enhancing nursing practice, its meaning needs to be further debated in order to avoid a tokenistic approach to its implementation in the care of patients from minority ethnic communities.

The Development and Evaluation of a Deaf Awareness Training Course for Support Staff

AbstractHearing impairments are common in people with intellectual disabilities and contribute to their communication difficulties. Those who care for and communicate with them need to be aware of this problem and of any strategies which may compensate for a hearing loss. The present study assessed the effectiveness of a Deaf Awareness Training Course for support workers of adults with intellectual disabilities. Questionnaires assessed knowledge of hearing impairment, hearing aid management and the use of strategies to facilitate communication. Knowledge prior to the course was poor despite previous experience of caring for people with intellectual disabilities. Those attending the course significantly improved their knowledge and use of strategies compared to a control group. Further research is needed to assess whether gains made in training of this kind are transferred to the support of people with intellectual disabilities.

Images in the twilight: Alzheimer's disease and palliative care

This paper provides a discussion of some of the issues surrounding the provision of palliative care for Alzheimer's sufferers and their families during the final stages of the disease. Five nurses working in dementia care institutions in Australia were invited to tell their story about the experience of caring for people in a twilight zone, where the sufferer is suspended in a world that is at the edge of existence.This paper explores the virtual silence in the literature regarding palliative care and Alzheimer's disease. However, it is primarily concemed with the images and metaphors surrounding the advancing stages of the disease. The images and the issues raised during the conversations with these nurses are discussed, together with recommendations for future research in this area.