The changing self: The impact of dementia on the personal and social identity of women (findings from the Improving the Experience of Dementia and Enhancing Active Life programme)

Psychological Impact ◽

Self Esteem ◽

Dementia Diagnosis ◽

Self Presentation ◽

Loss Of Self ◽

Active Life ◽

Self Enforcement ◽

This paper explores the impact of dementia on the selfhood of women, specifically the ways in which changes occur as a result of such a diagnosis. Interviews were conducted with 12 women (recruited from the Improving the Experience of Dementia and Enhancing Active Life programme dataset), and analysed using interpretative phenomenological analysis. Emergent themes concerned the process of receiving and adjusting to a dementia diagnosis, the emotional and psychological impact of dementia, self-presentation and stigma and the self-enforcement of new boundaries. The analysis showed that dementia had a wide-ranging impact on the selfhood and identity of women, with newfound characteristics associated with the disease leading to a loss of self-esteem, sadness and anger. The women subsequently engaged in the modification of their behaviour, as a means of coming to terms with the losses experienced.

Riding a rollercoaster in a hurricane – researching my own chronic illness

Qualitative Research Journal ◽

10.1108/qrj-09-2021-0092 ◽

2021 ◽

Vol ahead-of-print (ahead-of-print) ◽

Author(s):

Rachel Murphy ◽

Belinda Harris ◽

Katharine Wakelin

Keyword(s):

Chronic Illness ◽

Lived Experience ◽

Medical Condition ◽

Psychological Impact ◽

Complex Nature ◽

Content Type ◽

Incurable Condition ◽

PurposeThis article outlines the experience of conducting Interpretative Phenomenological Analysis research into the chronic illness of Inflammatory Bowel Disease, an incurable condition of the gastro-intestinal tract which results in numerous physically and psychologically symptoms that are difficult to live with, by a researcher who shares the same condition. It considers the complex nature of researcher positioning from a nuanced, relational rather than binary insider/outsider position (Berger, 2015; Hayfield and Huxley, 2015). Additionally, the importance of reflexivity when conducting such personal, reciprocal qualitative research is brought to life, illustrating how such reflexivity deepens the relationship to the research, increases understanding of the interpretations and in turn its validity adds to the trustworthiness of both the endeavour and the written account (Etherington, 2007; Oakley, 2016).Design/methodology/approachConducting research into a medical condition that the researcher also experiences brings its own particular challenges (Hofmann and Barker, 2017). When the chosen methodology is Interpretative Phenomenological Analysis, with its in-depth, relational nature, those challenges intensify (Smith, 2009).FindingsUsing researcher journal extracts, the lived experience of researching whilst experiencing a chronic illness is explored. This includes the psychological impact of experiencing deep empathy for others living with IBD, managing the impact of increased disease knowledge, researching through fatigue and experiencing the claustrophobia of living with and researching one's own condition.Originality/valueFinally, tactics for surviving such research are provided in a bid to enable researchers and supervisors embarking on similar projects, to successfully manage the research rollercoaster ride even when it's in the middle of a Hurricane.

Experience of sexual self-esteem among men living with HIV

Journal of Health Psychology ◽

10.1177/1359105315597053 ◽

2016 ◽

Vol 22 (2) ◽

pp. 176-185 ◽

Cited By ~ 9

Author(s):

Poul Rohleder ◽

Daragh T McDermott ◽

Rachel Cook

Keyword(s):

Chronic Illness ◽

Sexual Health ◽

Safe Sex ◽

Self Esteem ◽

People Living With Hiv ◽

Sexual Inhibition ◽

Living With Hiv ◽

Much of the focus on sexual health for people living with HIV has been on promoting safe sex behaviours. However, also important for sexual health is a positive sexual self-esteem. This article reports on an interpretative phenomenological analysis of interviews with seven men about the impact that having HIV has had on their sense of sexual self. Five overarching themes were identified: the ‘destruction’ of a sexual self; feeling sexually hazardous; sexual inhibition; reclaiming a sexual self and finding a place through sero-sorting. With HIV now being a chronic illness, interventions are required to support people to lead sexually satisfying lives.

‘This is Killing me Inside’: The Impact of Having a Parent with Young-Onset Dementia

Dementia ◽

10.1177/1471301217702977 ◽

2017 ◽

Vol 18 (3) ◽

pp. 1089-1107 ◽

Cited By ~ 3

Author(s):

Helen J Aslett ◽

Jaci C Huws ◽

Robert T Woods ◽

Joanne Kelly-Rhind

Keyword(s):

Service Providers ◽

Parent Support ◽

Young Onset ◽

Roles And Responsibilities ◽

Affected Parent ◽

Young Onset Dementia ◽

The Impact ◽

Depth Interviews

This study explored the experience of young adults having a parent with young-onset dementia. In-depth interviews were undertaken with five participants aged between 23 and 36 years of age and these were analysed using interpretative phenomenological analysis. Participants were found to experience a number of stresses in relation to their parent’s illness, many of which were linked to loss and guilt. Five main themes were identified related to relationship changes, shifts in roles and responsibilities, support for the non-affected parent, support for self and the impact of living with their own potential risk of dementia. These findings are discussed in relation to the existing literature and suggest that individuals with a parent with young-onset dementia have needs which service providers should consider in the wider context of young-onset dementia care.

Love at first swipe? Explaining Tinder self-presentation and motives

Mobile Media & Communication ◽

10.1177/2050157916664559 ◽

2016 ◽

Vol 5 (1) ◽

pp. 80-101 ◽

Cited By ~ 59

Author(s):

Giulia Ranzini ◽

Christoph Lutz

Keyword(s):

Structural Equation ◽

Self Esteem ◽

Hooking Up ◽

Equation Modeling ◽

Future Research ◽

Mobile Media ◽

Self Presentation ◽

Psychological Predictor ◽

Real Self ◽

The emergence of location-based real-time dating (LBRTD) apps such as Tinder has introduced a new way for users to get to know potential partners nearby. The design of the apps represents a departure from “old-school” dating sites as it relies on the affordances of mobile media. This might change the way individuals portray themselves as their authentic or deceptive self. Based on survey data collected via Mechanical Turk and using structural equation modeling, we assess how Tinder users present themselves, exploring at the same time the impact of their personality characteristics, their demographics, and their motives of use. We find that self-esteem is the most important psychological predictor, fostering real self-presentation but decreasing deceptive self-presentation. The motives of use—hooking up/sex, friendship, relationship, traveling, self-validation, and entertainment—also affect the two forms of self-presentation. Demographic characteristics and psychological antecedents influence the motives for using Tinder, with gender differences being especially pronounced. Women use Tinder more for friendship and self-validation, while men use it more for hooking up/sex, traveling, and relationship seeking. We put the findings into context, discuss the limitations of our approach and provide avenues for future research into the topic.

Relatives’ Experiences of Frontal-Variant Frontotemporal Dementia

Qualitative Health Research ◽

10.1177/1049732312466294 ◽

2012 ◽

Vol 23 (2) ◽

pp. 156-166 ◽

Cited By ~ 24

Author(s):

Jan R. Oyebode ◽

Paul Bradley ◽

Joanne L. Allen

Keyword(s):

Frontotemporal Dementia ◽

Mutual Relationship ◽

Communication Problems ◽

It Impacts ◽

Social Settings ◽

Planning Ability ◽

In this article we address how relatives of people with frontal-variant frontotemporal dementia (fvFTD) experience the illness and how it impacts their lives. We interviewed 6 participants and carried out interpretative phenomenological analysis. We report on 11 themes that reflect distinctive challenges. Five themes relate to witnessing bizarre and strange changes: changed appetites and drives, loss of planning ability, loss of inhibition leading to social embarrassment, risky behavior, and communication problems. Four relate to managing these changes and two to the impact on the person and his or her relationships. Relatives must live with unusual changes in the person with fvFTD and the stigma this carries in social settings. They learn to act assertively for their relatives and put effort into promoting quality of life, using strategies adapted for fvFTD. Relatives grieve the loss of the person with fvFTD and their mutual relationship, but nonetheless find sources of solace and hope.

How do women with secondary breast cancer experience telling their adolescent children about their diagnosis?

Journal of Health Psychology ◽

10.1177/1359105316648484 ◽

2016 ◽

Vol 23 (9) ◽

pp. 1223-1233 ◽

Cited By ~ 1

Author(s):

Leonie Lalayiannis ◽

Nicky Asbury ◽

Graham Dyson ◽

Amanda Walshe

Keyword(s):

Breast Cancer ◽

Cancer Diagnosis ◽

Breast Cancer Diagnosis ◽

Primary Cancer ◽

Structured Interviews ◽

Cancer Experience ◽

Secondary Breast Cancer ◽

This study investigated how women with secondary breast cancer experience telling their adolescent children. Semi-structured interviews were conducted with women who had been diagnosed with secondary breast cancer at least 1 year prior to the interview. Seven women, who had at least one child between 12 and 19 years old living at home at the time of diagnosis, were interviewed. The interviews were analysed using interpretative phenomenological analysis for an in-depth understanding of women’s experiences. Women found that it was easier to tell their children of their secondary breast cancer diagnosis compared to their primary cancer. However, they talked about the impact the diagnosis had on their family.

Stress as Experienced by People with Dementia: An Interpretative Phenomenological Analysis

Dementia ◽

10.1177/1471301217713877 ◽

2017 ◽

Vol 18 (4) ◽

pp. 1427-1445 ◽

Cited By ~ 2

Author(s):

Barbara K Sharp

Keyword(s):

Sense Of Self ◽

People With Dementia ◽

Health And Social Care ◽

Self Worth ◽

And Coping ◽

Study Participants ◽

Person With Dementia ◽

Health and social care research on stress in dementia has predominantly considered the stress experienced by family and professional carers. Focus on the person with dementia has frequently laid emphasis on the impact of stress-related behaviour on others and how such behaviour might be ‘managed’. This paper describes a qualitative study which gives voice to people with dementia on the subject of stress and responds to the need for a better understanding of stress as it is experienced by people with dementia themselves. An interpretative phenomenological analysis was conducted on data collected from a purposive sample of people diagnosed with varying types of dementia from across Scotland. Discussions across five focus groups consisting of 21 participants with dementia in total generated data which was audio and video recorded, and analysed thematically. Five key themes emerged, described in the participants’ own words, which were: (1) ‘Something’s torn, your life’s torn’; (2) ‘Families can bring stress’; (3) ‘It’s the stress of living with dementia’; (4) ‘A whole new set of rules’; and (5) ‘It’s our lives and we’ll get it under control ourselves’. These themes reflect experiences of loss, challenges to one’s sense of self, relationship dynamics, living with the symptoms of dementia, learning to do things differently and establishing coping mechanisms that provide control. Study participants illustrated individual potential for adapting and coping with some of the most stressful aspects of living with dementia, challenging assumptions of inevitable fixed decline and progressive vulnerability to stress. Participants describe a process of recovery in their perceptions of self-worth, purpose and value in life following diagnosis.

Understanding the needs and experiences of people with young onset dementia: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2017-021166 ◽

2018 ◽

Vol 8 (10) ◽

pp. e021166 ◽

Cited By ~ 10

Author(s):

Luisa I Rabanal ◽

John Chatwin ◽

Andy Walker ◽

Maria O’Sullivan ◽

Tracey Williamson

Keyword(s):

Help Seeking ◽

Late Onset ◽

Psychological Impact ◽

Young Onset ◽

People With Dementia ◽

Health And Social Care ◽

Young Onset Dementia ◽

The Uk ◽

AimDespite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them.SettingParticipants’ homes, support group premises or university rooms.Participants14 people with a diagnosis of YOD from a northern UK city.DesignSemistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis.ResultsFour superordinate themes are reported on ‘process of diagnosis’, ‘the impact of living YOD’, ‘needs of people with YOD’ and ‘living well with YOD’. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks.ConclusionsPeople who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

The journey to radiographer advanced practice: a methodological reflection on the use of interpretative phenomenological analysis to explore perceptions and experiences

Journal of Radiotherapy in Practice ◽

10.1017/s1460396919000621 ◽

2019 ◽

Vol 19 (2) ◽

pp. 116-121 ◽

Cited By ~ 1

Author(s):

Lynn M. Cuthbertson

Keyword(s):

Qualitative Research ◽

Phase 1 ◽

Advanced Practice ◽

Structured Interviews ◽

Two Phase ◽

Oncology Research ◽

The Impact ◽

Methodological Reflection

AbstractIntroduction:This paper is a methodological reflection on the use of interpretative phenomenological analysis (IPA) utilised in the context of a qualitative research project that explored perceptions and experiences of the journey to radiographer advanced practice.Methods and materials:A two-phase qualitative research explored the perceptions and experiences. Phase 1 reviewed reflective diaries (n = 12) kept during the educational phase of the practitioner journeys. Phase 2 included one-to-one, semi-structured interviews (n = 6) which were recorded, transcribed verbatim and reviewed using the IPA six-stage thematic analysis for practitioners embedded in the advanced practice role.Findings:Key themes arising from reflective diary analysis informed the interview content; and following interview transcription, data immersion and IPA, 12 emergent sub-themes generated 3 superordinate themes.Discussion:Theoretical perspectives and application of the methodology are discussed. The phenomenological and interpretative qualities of IPA have the potential to provide unique and valuable insights into lived experiences of individuals. It is hoped that this researchers’ reflections are transferrable for those interested in employing a qualitative methodology for radiotherapy and oncology research.Conclusion:Therapeutic radiographers work within rapidly changing environments from technological, treatment and care perspectives. With continued development and change, the impact of research utilising an IPA methodology may allow exploration of perceptions and experiences from a range of key stakeholders with the potential to increase the research base.

Lack of meaningful activity on acute physical hospital wards: Older people’s experiences

British Journal of Occupational Therapy ◽

10.1177/0308022617735047 ◽

2017 ◽

Vol 81 (1) ◽

pp. 15-23 ◽

Cited By ~ 4

Author(s):

Channine Clarke ◽

Caroline Stack ◽

Marion Martin

Keyword(s):

Occupational Therapy ◽

Older People ◽

Sense Of Self ◽

Physical And Mental Health ◽

Meaningful Activity ◽

Increased Risk ◽

Hospital Wards ◽

Introduction Research suggests that older people on acute physical hospital wards are at increased risk of physical and mental health decline due to inactivity during their stay. Whilst studies have highlighted potential causes of such inactivity, there exists a paucity of occupational therapy research that explores engagement in meaningful occupation from patients’ perspectives in hospital settings. Method Interpretative phenomenological analysis was used to gain a deeper understanding of how 18 older people spent their time on hospital wards and the impact this had on their feelings of wellbeing. Interviews were carried out and analysed using interpretive phenomenological analysis guidelines. Findings Patients experienced a lack of meaningful activity on the wards which resulted in feelings of passivity, boredom and a sense of alienation from their normal roles, routines and sense of self. Despite a willingness to engage in activity, barriers were suggested as limited resources, hospital routines and personal limitations. Suggestions of potential meaningful activities were made. Conclusion Occupational therapy services need to review service provision and provide an occupation-focused service, ensuring that patients’ engagement in meaningful activities is seen as an integral part of their role in order to maintain patients’ mental and physical wellbeing. Recommendations for further research are highlighted.