Exploring the Lived Experience of People with Dementia Through Interpretative Phenomenological Analysis

Small Body ◽

Structured Interviews ◽

People With Dementia ◽

Analytic Process ◽

Moderate Dementia ◽

Negative Perceptions

Dementia is arguably one of the biggest challenges facing society today, impacting millions of people worldwide. Nonetheless, there is only a relatively small body of research exploring what it is like to live with dementia from the perspectives of people who have this condition. This is partly because of the (implicit or explicit) belief that people with dementia lack insight into their condition and cannot talk about their experiences clearly. In this article, I argue that such beliefs are typically both erroneous and unhelpful, and that there is great value in seeking to illuminate the lived experiences of people with dementia. I present an interpretative phenomenological analysis of data from semi-structured interviews with six participants who had moderate dementia. I elicit five themes from this analytic process, and discuss the three most prominent here: awareness and understanding of dementia, clarity and confusion, and social support and relationships. I mobilise these themes to narrate the lived experiences of people with dementia, demonstrating their awareness both of the difficulties presented by dementia and of the negative perceptions of others.

Paradoxical and powerful: Volunteers’ experiences of befriending people with dementia

Dementia ◽

10.1177/1471301216654848 ◽

2016 ◽

Vol 17 (7) ◽

pp. 821-839 ◽

Cited By ~ 6

Author(s):

Diane E Greenwood ◽

Carolyn Gordon ◽

Claire Pavlou ◽

Jessica V Bolton

Keyword(s):

Lived Experiences ◽

Human Experience ◽

Future Research ◽

Structured Interviews ◽

Personal Learning ◽

People With Dementia ◽

Power Equality ◽

The Relationship

This qualitative UK study explored the lived experiences of volunteer befrienders to people with dementia, using interpretative phenomenological analysis. Individual semi-structured interviews were conducted with nine befrienders aged between 25 and 66 years. The relationship that developed between befriender and befriendee was at the heart of befrienders’ experiences. It comprised numerous paradoxical processes that generated issues of power, equality and boundaries, characterising befriending as a complex and unique phenomenon. Befriending was expressed as a deeply personal and human experience, often with emotional power and profound meaning. Befrienders’ personal learning included seeing past dementia stereotypes, challenging their own assumptions and boundaries, and reflecting on love, life and humanness. Dissemination of these findings could help to challenge the stigma around dementia, and enhance recruitment and support of dementia befrienders. Future research should consider befriendee experiences of the relationship, additional measures of befriending effectiveness, and exploration of befriender attrition and support.

Living with Heart Failure during the COVID-19 Pandemic: An Interpretative Phenomenological Analysis

Clinical Nursing Research ◽

10.1177/10547738211016614 ◽

2021 ◽

pp. 105477382110166

Author(s):

Alessia Martina Trenta ◽

Davide Ausili ◽

Rosario Caruso ◽

Cristina Arrigoni ◽

Massimo Moro ◽

...

Keyword(s):

Heart Failure ◽

Coping Strategies ◽

Lived Experience ◽

Structured Interviews ◽

Hospital Organization ◽

Challenging Situation ◽

And Coping ◽

Negative Feelings

This study aimed to explore lived experience of patients with heart failure (HF) during the COVID-19 pandemic. A qualitative study was conducted using an interpretative phenomenological analysis (IPA). Data collection performed in March-May 2020, using in-depth, semi-structured interviews on a purposive sample. Data were analyzed according to the IPA methodology, and triangulation, bracketing, journaling, and member checking were used to assure rigor. 14 patients with HF were enrolled, and three main themes described their lived experience during the COVID-19 pandemic: Vulnerability, Hanging in the balance, and Coping strategies. These people felt particularly vulnerable to the novel virus and experienced uncertainty due to hospital organization changes. Because of this, they felt like they were hanging in the balance, experiencing various negative feelings. Nevertheless, they managed to deal with this challenging situation by implementing some peculiar coping strategies. The COVID-19 represents a significant challenge for patients with HF, impacting significantly on their lives.

Exploring the relevancy of random and scheduled alcohol breathalyser testing in high-risk jobs within safety-sensitive work settings

SA Journal of Human Resource Management ◽

10.4102/sajhrm.v19i0.1632 ◽

2021 ◽

Vol 19 ◽

Author(s):

Vusi Mthimkhulu ◽

Hugo D. Van der Walt

Keyword(s):

Lived Experiences ◽

Qualitative Method ◽

Alcohol Intoxication ◽

Structured Interviews ◽

Ongoing Debate ◽

Work Settings ◽

Value Add ◽

Viable Method

Orientation: Workplace testing is seen as a viable method in monitoring alcohol intoxication in the workplace. This article explored lived experiences of random and scheduled alcohol breathalyser testing to gain insights into meaning and understanding of the phenomenon under study.Research purpose: Random and scheduled testing are preferred techniques of assessing intoxication in the workplace. This article set to gain insights into whether behaviour can have an influence on the effectiveness of random and scheduled testing. The information can contribute to the ongoing debate on the efficacy of workplace testing and lays groundwork for future studies.Motivation for the study: Emergent data seem to suggest that the success of workplace testing in preventing alcohol and substance use in the workplace is indecisive.Research approach/design and method: A qualitative method was employed to collect data from eight alcohol-consuming individuals who performed jobs considered safety-sensitive through semi-structured interviews. Data were analysed through the application of an interpretative phenomenological analysis (IPA).Main findings: Findings revealed incidents of alcohol intoxication within the workplace in spite of random and scheduled testing in place. There seems to be a disregard for rules that prohibit intoxication in the workplace. Money bribes seem to enable cheating on testing in the workplace. Behaviour undercuts the goal of an alcohol-free workplace.Practical implications: Behaviour stemming from on-site intoxication and cheating on alcohol tests hinders on the goal of attaining an alcohol-free workplace.Contribution/value-add: The analysis of behaviour could contribute to the ongoing debate regarding the efficacy of workplace testing.

The Illness-Disease Dynamic: Psychological Wellbeing in Type 2 Diabetes: An Interpretative Phenomenological Analysis

The Qualitative Report ◽

10.46743/2160-3715/2016.2615 ◽

2016 ◽

Author(s):

Claire McKenzie ◽

Kristina Bennert ◽

David Kessler ◽

Alan Montgomery

Keyword(s):

Type 2 Diabetes ◽

Lived Experience ◽

Lived Experiences ◽

Psychological Symptoms ◽

Detailed Examination ◽

Psychological Processes ◽

Depth Interviews

Distress and depression often go unrecognised in people with diabetes. In this article, I present an Interpretative Phenomenological Analysis (IPA) of the lived experience of people with Type 2 diabetes, based on individual in-depth interviews with 10 patients. The purpose of this research was to gain a deeper understanding of these psychological symptoms through a detailed examination of how patients interpret and respond to their experience of the condition. I propose a revised model for the connection between the disease of diabetes and patients’ lived experiences of illness, as one of embodied coexistence rather than relation. Through my analysis, I identify the psychological processes that might need to be addressed in an effective preventative support system.

An Interpretative Phenomenological Analysis exploring how psychiatrists conceptualise conduct disorder and experience making the diagnosis

Clinical Child Psychology and Psychiatry ◽

10.1177/1359104520964519 ◽

2020 ◽

pp. 135910452096451

Author(s):

Jessica Amy Staniford ◽

Matthew Lister

Keyword(s):

Conduct Disorder ◽

Reflective Practice ◽

Lived Experiences ◽

Clinical Implications ◽

Structured Interviews ◽

Severe Problem ◽

The Way

The way professionals conceptualise CD likely impacts the identity of children given the diagnosis, yet how psychiatrists conceptualise CD, and experience making the diagnosis, is under-researched. Interpretative Phenomenological Analysis explored how psychiatrists conceptualise CD and experience making the diagnosis. Semi-structured interviews captured participants’ lived experiences and associated meanings. Four superordinate themes emerged: ‘Parents and professionals are overwhelmed by their struggles with CD’; ‘What is CD? Uncertainty regarding the cause, but clarity that it is a severe problem’; ‘CD as a controversial construct’; and ‘Whose issue is it anyway? Battles with blame and responsibility’. The emerging problem-saturated narrative is discussed. Clinical implications include increased training, reflective practice and using a formulation-based approach.

On-Time Maturation in Female Adolescent Ballet Dancers: Learning From Lived Experiences

The Journal of Early Adolescence ◽

10.1177/02724316211036752 ◽

2021 ◽

pp. 027243162110367

Author(s):

Siobhan B. Mitchell ◽

Anne M. Haase ◽

Sean P. Cumming

Keyword(s):

Lived Experiences ◽

Female Adolescent ◽

Structured Interviews ◽

Ballet Dancers ◽

The United Kingdom ◽

Early Maturing ◽

Fitting In ◽

Pubertal Transition

This study employed semi-structured interviews and Interpretative Phenomenological Analysis to explore experiences of on-time maturation in nine adolescent ballet dancers from across three vocational ballet schools in the United Kingdom. Two themes were identified as central to their experiences: ‘A right and a wrong way to grow’, and fitting in and moving forward. Instead of perceiving themselves as ‘average’ and experiencing a relatively easy pubertal transition, on-time dancers described unique challenges associated with a fluctuation between fitting in and not fitting in within their social context. The implications of on-time maturation in this context are complex and do not appear to follow the same trajectory as early maturing ballet dancers nor on-time non-dancers.

Caring for a Dying Partner: The Male Experience

Journal of Palliative Care ◽

10.1177/0825859718774679 ◽

2018 ◽

Vol 34 (1) ◽

pp. 5-11 ◽

Cited By ~ 1

Author(s):

Rebecca Judd ◽

Helen Guy ◽

Ruth A. Howard

Keyword(s):

Emotional Support ◽

Lived Experiences ◽

Help Seeking ◽

Terminal Illness ◽

Structured Interviews ◽

Conflicting Demands ◽

Seeking Help ◽

Male Experience

Objective: Caring for someone close who is dying, such as a spouse, is an emotive experience; however, there is little research examining the phenomenon of caregiving for a spouse at the end of life and of men’s experiences specifically. Existing literature suggests that men who are providing care are less likely to seek help than women, especially psychological and emotional support for themselves. The aim of the current study was to explore the lived experiences of men caring for a dying spouse or partner and their help-seeking for themselves during this time. Methods: Eight semi-structured interviews were conducted with men caring for their partner, who was receiving palliative care. Interviews were transcribed verbatim and analyzed using interpretative phenomenological analysis. Results: Three superordinate themes emerged from the data, “Illness Questions Everything,” “Constructing the Caring Role,” and “Help-Seeking at the Limit.” The arrival of a terminal illness into a partnership is traumatic, and while it can deepen relationships, it can also create distance. The carer role has conflicting demands and carers need to make sense of their experience in order for the carer role to be constructed as a source of purpose or meaning. Finally, the idea of seeking help for oneself as a carer during this time is seen as “incompatible,” unmanageable, and can only be considered if constructed as a “last resort.” Significance of Results: Men care too; however, they can feel confused by this role and unsure as to how this fits with their identity as a man. They make sense of this by identifying as a partner whose “duty” or “responsibility” is to provide care. Although this is an understandable stance, it puts them at risk of further emotional, psychological, and physiological difficulties if their own needs are not met. Men need to be supported during this time and their caring qualities need to be destigmatized and demystified so that they can feel more able to identify with the role and look after themselves while caring for their dying partner.

Immigrants’ Experiences on Integration While Attempting to Access the Labour Market: Implications for Social Work Practice

Social Sciences ◽

10.3390/socsci10040121 ◽

2021 ◽

Vol 10 (4) ◽

pp. 121

Author(s):

Reidun Ims ◽

Lennart Lorås ◽

Ottar Ness ◽

Linda Finlay

Keyword(s):

Social Work ◽

Labour Market ◽

Social Exclusion ◽

Lived Experiences ◽

Work Practice ◽

Social Work Practice ◽

Structured Interviews ◽

Gainful Employment

(1) Background: The challenge of immigrants and their integration into adopted countries is a key topic for the global field of social work. However, there is a paucity of research on immigrants’ lived experiences in gaining access to the labour market. Thus, this study examines how immigrants in Norway experience integration while in the process of gaining access to the labour market. The prevalent notion of integration achieved through gainful employment narrows the concept of integration and disguises the underlying marginalization and inequalities that are derived from majority- minority dividing lines. (2) Methods: Data were collected via nine qualitative semi-structured interviews with ten immigrants (one interview was with a couple) living in Norway. Data was analysed by using Interpretative Phenomenological Analysis. (3) Results: The results showed that the participants experienced social exclusion but accepted this as an inevitable part of being an immigrant. The participants regarded the learning of Norwegian language as the key aspect to understanding social customs and forming informal relationships with native Norwegians and important for achieving integration. Freedom and equality were also regarded as issues of great importance. (4) Conclusions: The results provide the field of social work with important insights towards informing social work practices and challenging current paradigms.

Experiences of shame for people with dementia: An Interpretative Phenomenological Analysis

Dementia ◽

10.1177/1471301217732430 ◽

2017 ◽

Vol 18 (5) ◽

pp. 1896-1911 ◽

Cited By ~ 4

Author(s):

Hannah Aldridge ◽

Paul Fisher ◽

Ken Laidlaw

Keyword(s):

Early Stage ◽

Structured Interviews ◽

Psychological Therapies ◽

People With Dementia ◽

Depth Analysis ◽

The Individual ◽

And Control ◽

Published Research

Studies highlight that shame can be problematic for people with early-stage dementia. However, no published research has specifically explored experiences of shame in dementia from the perspective of the individual. This study uses Interpretative Phenomenological Analysis to gain an understanding of how shame is experienced and made sense of by six people with early-stage dementia. Individual, semi-structured interviews took place in participants’ homes. An in-depth analysis of the data revealed four superordinate themes implicated in shame experiences: Avoidance explains the participants’ efforts to distance themselves from shaming experiences; participants reported Negative self-perceptions including a weakening self, loss of value and meaninglessness; Relationship matters involved issues around trust, burden and past relationships and Uncertainty and loss of control highlights participants’ anxiety about losing clarity and control. Ideas are contributed for promoting non-shaming experiences for people with dementia, particularly through communication during assessment and diagnosis, and psychological therapies.

“Why them, why me, why us?” The Experiences of Parents of Children with Lysomal Acid Lipase Deficiency: An Interpretative Phenomenological Analysis Study

10.21203/rs.3.rs-956316/v1 ◽

2021 ◽

Author(s):

Sadie Hassell ◽

Debbie M Smith ◽

Stewart Rust ◽

Simon Jones ◽

Anja Wittkowski

Keyword(s):

Lived Experiences ◽

Clinical Pathways ◽

Emotional Reactions ◽

Lysosomal Storage ◽

Acid Lipase ◽

Structured Interviews ◽

Enzyme Replacement ◽

The United Kingdom

Abstract BackgroundLysosomal acid lipase deficiency (LALD) is an ultra-rare, inherited metabolic disease within the category of lysosomal storage disorders, affecting an infant’s ability to metabolise cholesterol. Developments in treatment, including Enzyme Replacement Therapy, have proven successful, with some children living for a number of years post-diagnosis, although the future still remains unknown. The aim of this study was to explore the lived experiences of parents of children with LALD. Main textParticipants were recruited from across the United Kingdom between 2020-2021. Eight parents (five mothers and three fathers) whose child had a confirmed diagnosis of LALD were interviewed. Data collected from the semi-structured interviews were audio-record, transcribed and analysed using Interpretative Phenomenological Analysis (IPA). Three superordinate and nine subordinate themes emerged from the data: 1) Uncertainty - a double-edged sword (plunged into an uncertain world, living life with worry and walking the tightrope of stability), 2) Powerless against a shared battle (a helpless parent, a joint battle, protection against distress and a vulnerable parent needing to be held) and 3) Accepting a life with LALD - the camouflage of a “normal” child (trying to make sense of ‘why’ and a condition disguised by normality). ConclusionsThe findings of this study highlighted that the diagnosis of LALD proves to be a very vulnerable time in parents’ lives, eliciting strong emotional reactions against an unknown future. This study signified the importance of clinical pathways and service provisions to support parents and their children through this period, raising important issues around diagnosis.