scholarly journals The Lived Experience of Diagnosis Delivery in Motor Neurone Disease: A Sociological-Phenomenological Study

2013 ◽  
Vol 18 (2) ◽  
pp. 36-47 ◽  
Author(s):  
Amanda Pavey ◽  
Jacquelyn Allen-Collinson ◽  
Toby Pavey
Keyword(s):  
Lived Experience ◽  
Health Professionals ◽  
Professional Training ◽  
Phenomenological Study ◽  
Mode Of Delivery ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Sociological Study ◽  
Qualitative Approaches ◽  
Phenomenological Perspective

Relatively few previous studies of individuals receiving a diagnosis of Motor Neurone Disease within the UK health care system have employed qualitative approaches to examine the diagnostic journey from a patient perspective. A qualitative sociological study was undertaken, involving interviews with 42 participants diagnosed with MND, to provide insight into their experiences of undergoing testing and receiving a diagnosis. Adopting a sociological-phenomenological perspective, this article examines key themes that emerged from participant accounts surrounding the lived experience of the diagnostic journey. The key themes that emerged were: The diagnostic quest; living with uncertainty; hearing bad news; communication difficulties; and a reified body of medical interest. In general, doctor-patient communication both at pre and post diagnosis was experienced as highly stressful, distressing and profoundly upsetting. Participants reported such distress as being due to the mode of delivery and communication strategies used by health professionals. We therefore suggest that professional training needs to emphasize the importance to health professionals of fostering greater levels of tact, sensitivity and empathy towards patients diagnosed with devastating, life-limiting illnesses such as MND.

Factors to consider for motor neurone disease carer intervention research: A narrative literature review

2016 ◽  
Vol 15 (5) ◽  
pp. 600-608 ◽  
Author(s):  
Cathy Gluyas ◽  
Susan Mathers ◽  
Nicole Hennessy Anderson ◽  
Anna Ugalde
Keyword(s):  
Social Support ◽  
Lived Experience ◽  
Psychosocial Intervention ◽  
Emotional Health ◽  
Intervention Research ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Factors Affecting ◽  
Narrative Literature Review ◽  
Relationship Factors

ABSTRACTObjective:The experience of caregiving in the context of motor neurone disease (MND) is extremely challenging. Over the past 15 years, quantitative and qualitative studies have delineated the psychosocial aspects of this experience, exploring its impact on caregivers' quality of life, rates of depression, distress, anxiety, and burden. Our paper aimed to provide an overview of the lived experience of MND caregivers, identifying the variables that can influence MND caregiver functioning that are relevant to the development of an intervention.Method:A narrative review was conducted, synthesizing the findings of literature retrieved from 2000 to early 2016.Results:A total of 37 articles were included in the review. The articles varied considerably in terms of methodology and quality. The main influential aspects reported and identified were factors pertaining to the patient, factors intrinsic to the caregiver, relationship factors, and social support factors.Significance of Results:There is evidence to support the fact that caregivers have poorer outcomes when they care for patients with a more severe clinical profile, poorer emotional health or neurobehavioral concerns, or when the caregivers themselves struggle with adaptive problem-solving and coping skills. The availability and use of social support are also likely to be important for caregiver psychosocial outcomes. Further investigation is required to clarify the influence of changes in the relationship with the patient. Significant factors affecting the caregiver experience are considered in relation to their amenability to psychosocial intervention. Recommendations are made regarding the optimal features of future psychosocial intervention research.

scholarly journals The Experiences of Nurses and Physicians Caring for COVID-19 Patients: Findings from an Exploratory Phenomenological Study in a High Case-Load Country

2021 ◽  
Vol 18 (17) ◽  
pp. 9002 ◽  
Author(s):  
Moawiah Khatatbeh ◽  
Fadwa Alhalaiqa ◽  
Aws Khasawneh ◽  
Ala’a B. Al-Tammemi ◽  
Haitham Khatatbeh ◽  
...  
Keyword(s):  
Lived Experience ◽  
Professional Training ◽  
Phenomenological Study ◽  
Work Conditions ◽  
Emotional Reactions ◽  
Working Environment ◽  
Mental Wellbeing ◽  
Structured Interviews ◽  
Services Delivery ◽  
Nurses And Physicians

Various changes have affected health services delivery in response to the repercussions of the COVID-19 pandemic, and this may exhibit unprecedented effects on healthcare workers (HCWs). This study aimed to explore the lived experience of physicians and nurses caring for patients with COVID-19 in Jordan. An interpretative phenomenology approach was used, and sampling was purposively performed. Data were collected through semi-structured interviews using an online meeting platform (Zoom®). Interviews were audio-recorded, transcribed verbatim, and analyzed. The data were obtained from 26 physicians and nurses caring for patients with COVID-19. The mean age of the participants was 29.41 years (SD = 2.72). Six main themes and 17 subthemes were identified: (i) emotional reactions; (ii) preparation; (iii) source of support; (iv) extreme workload; (v) occupational challenges, and (vi) work-related concerns. The results showed that nurses and physicians caring for COVID-19 patients in Jordan were experiencing mental and emotional distress and were practicing under inadequate work conditions. This distress could be multifactorial with personal, organizational, or cultural origins. Our findings may guide policymakers to consider the potential factors that significantly affect working environment in healthcare settings, the physical and mental wellbeing of HCWs, and the required professional training that can help in enhancing resilience and coping strategies amidst crises.

scholarly journals Ever decreasing circles: terminal illness, empowerment and decision-making

2010 ◽  
Vol 2 (2) ◽  
pp. 130 ◽  
Author(s):  
Kate Richardson ◽  
Rod MacLeod ◽  
Bridie Kent
Keyword(s):  
Decision Making ◽  
Lived Experience ◽  
Health Professionals ◽  
Terminal Illness ◽  
Phenomenological Study ◽  
Terminally Ill ◽  
Power Sharing ◽  
Political Processes ◽  
Palliative Care Setting ◽  
Self Worth

INTRODUCTION: Empowerment is the personal and political processes patients go through to enhance and restore their sense of dignity and self-worth. However, there is much rhetoric surrounding nurses facilitating patients’ daily choices and enabling empowerment. Furthermore, there is frequently an imbalance of power sharing, with the patient often obliged to do what the health professional wants them to do. METHOD: This phenomenological study describes the lived experience of patients attending an outpatient clinic of a community hospice. A qualitative study using Max van Manen’s phenomenological hermeneutic method was conducted to explore issues surrounding empowerment and daily decisionmaking with terminally ill patients. The participants’ stories became a stimulus for learning about the complexities of autonomy and empowerment. It also engendered reflection and analysis of issues related to power and control inequities in current nursing practices. FINDINGS: The results revealed not only the themes of chaoticum, contracting worlds and capitulation, but that health professionals should be mindful of the level of control they exert. Within the palliative care setting they need to become partners in care, enhancing another person’s potential for autonomous choice. CONCLUSION: Empowerment must not be something that simply occurs from within, nor can it be done by another. Intentional efforts by health professionals must enable terminally ill people to be able to stay enlivened and connected with a modicum of autonomy and empowerment over daily decisions, no matter how mundane or monumental they might be. KEYWORDS: Phenomenology; empowerment; autonomy; terminal care; decision-making

Experiences of dying, death and bereavement in motor neurone disease: A qualitative study

2011 ◽  
Vol 26 (4) ◽  
pp. 368-378 ◽  
Author(s):  
Bridget Whitehead ◽  
Mary R O’Brien ◽  
Barbara A Jack ◽  
Douglas Mitchell
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Health Professionals ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Care Planning ◽  
Family Carers ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care

Objectives: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in the final stages of the disease and bereavement period. Methods: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18 current family carers and 10 former family carers. Results: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may exacerbate patient distress and desire for hastening death. Conclusion: this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs.

scholarly journals Meanings and senses of being a health professional with tuberculosis: an interpretative phenomenological study

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e035873
Author(s):  
Marcandra Nogueira Almeida Santos ◽  
Antonia Margareth Moita Sá ◽  
Juarez Antonio Simões Quaresma
Keyword(s):  
Lived Experience ◽  
Health Professionals ◽  
Personal Experience ◽  
Phenomenological Study ◽  
Diagnosis And Treatment ◽  
Tuberculosis Prevention ◽  
History Of ◽  
Tuberculosis Diagnosis ◽  
Health Institutions ◽  
Depth Interviews

ObjectiveThe aim of the study was to analyse and understand meanings and senses of living with tuberculosis for health professionals.Method/designThis is an interpretative phenomenological study conducted from in-depth interviews to analyse how health professionals understand their personal experience of tuberculosis.ScenarioTwo reference health institutions for tuberculosis diagnosis and treatment located in a municipality of the Eastern Brazilian Amazon.ParticipantsIntentional sample of 15 health professionals with the disease or with a recent history of tuberculosis.ResultsRegarding the personal experience of tuberculosis of the participating health professionals, four superordinate themes were identified: (1) experiencing tuberculosis, (2) experiencing the diagnosis of tuberculosis, (3) facing the treatment of tuberculosis and (4) signifying tuberculosis.ConclusionThis study verified that health professionals live the experience of tuberculosis similar to other people: with fear, anguish, frustration, prejudice and health needs not always met by the services and programmes for the control of the disease. The lived experience has an important impact on the health professionals’ ways of understanding the kind of empathic and sensitive care that should be provided to people with tuberculosis. In addition, it is concluded that specific governmental strategies are needed for tuberculosis prevention, diagnosis and treatment among health professionals.

Health professionals' responses to multiple sclerosis and motor neurone disease

1998 ◽  
Vol 12 (5) ◽  
pp. 383-394 ◽  
Author(s):  
Helen Carter ◽  
Christine McKenna ◽  
Roderick MacLeod ◽  
Robyn Green
Keyword(s):  
Multiple Sclerosis ◽  
Health Professionals ◽  
Motor Neurone ◽  
Motor Neurone Disease

A New State of Being

2016 ◽  
Vol 74 (3) ◽  
pp. 345-360 ◽  
Author(s):  
Christine Yvonne Denhup
Keyword(s):  
Lived Experience ◽  
Health Professionals ◽  
Phenomenological Study ◽  
Parental Bereavement ◽  
Hermeneutic Phenomenological ◽  
Bereaved Parents ◽  
Death Of A Child ◽  
Conversational Interviews ◽  
One Year ◽  
Hermeneutic Phenomenological Study

In spite of growing bereavement literature, the meaning of the lived experience of parental bereavement is not well understood. This article presents selected findings from a Heideggerian hermeneutic phenomenological study which aimed to describe the lived experience of bereaved parents who experienced the death of a child due to cancer. Conversational interviews were conducted with six parents who experienced the death of a young child due to cancer at least one year prior to participation. The nature of parental bereavement was revealed to be a new state of being into which parents enter immediately after the death of a child and which has no end point. Findings will equip health professionals and others who work with bereaved parents with a deeper understanding of the meaning of parental bereavement.

The importance of supportive relationships with general practitioners, hospitals and pharmacists for mothers who ‘give medicines’ to children with severe and profound intellectual disabilities

2020 ◽  
pp. 174462952095100
Author(s):  
Carmel Doyle
Keyword(s):  
Intellectual Disabilities ◽  
Lived Experience ◽  
Health Professionals ◽  
Phenomenological Study ◽  
Daily Basis ◽  
Daily Activities ◽  
Supportive Relationships ◽  
Hermeneutic Phenomenological ◽  
Hermeneutic Phenomenological Study ◽  
Insight Into

A purposeful sample of 15 mothers of children with severe and profound intellectual disabilities participated in this hermeneutic phenomenological study through interviews and completion of a diary. The aim of the study was to explore mothers’ lived experience of ‘giving medicines’ to children with severe and profound intellectual disabilities. Findings yielded multiple themes, one of which gave insight into the importance of supportive relationships with health professionals. The general practitioner (GP), hospital and pharmacist are key in providing supportive elements to mothers’ daily role. Having the support of a helpful GP was key in helping mothers cope on a daily basis for child related queries on illness, getting prescriptions or seeking advice. Accessibility to the hospital and avoiding the emergency department with their child was recommended. The pharmacist was central to the daily activities relating to ‘giving medicines’ and a good relationship resulted in a happier mother.

scholarly journals The Lived Temporalities of Prognosis

2021 ◽  
Vol 39 (2) ◽  
pp. 138-155
Author(s):  
Dikaios Sakellariou ◽  
Nina Nissen ◽  
Narelle Warren
Keyword(s):  
Lived Experience ◽  
Early Death ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
The Future ◽  
To Come ◽  
Over Time ◽  
Do So

In this article, we explore the ways in which a man with motor neurone disease, Gareth, and his wife and carer, Maggie, enact different temporal orientations, when the expected future, an early death, does not arrive. We attend to the tensions between everyday priorities and uncertain futures to discuss the ways Gareth and Maggie negotiate action to deal with problems that are yet to come, but, despite this, already matter. We argue that prognosis thrusts people towards multiple presents and futures; while the future is fixed in time through prognosis and repaired through present action, it is also unfixed as lived experience unfolds over time. What emerges is a dialogue between multiple futures, pre-determined and uncertain, and practices that aim to repair the future, even if they cannot do so.

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