scholarly journals Dismissal, distrust, and dismay: A phenomenological exploration of young women’s diagnostic experiences with endometriosis and subsequent support

2021 ◽  
pp. 135910532110593
Author(s):  
Georgina Wren ◽  
Jenny Mercer
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Phenomenological Analysis ◽  
Diagnostic Process ◽  
Emotional Difficulties ◽  
Younger Women ◽  
Women's Experiences ◽  
On Line ◽  
The Impact ◽  
Current Guidelines ◽  
Phenomenological Exploration

Endometriosis is associated with extensive physical and emotional difficulties, yet there is little research investigating the impact of the diagnostic journey particularly for younger women. Using semi structured on-line interviews and an interpretative phenomenological analysis, this study explored nine young women’s experiences of the diagnostic process and the significance of support during this period. Three main themes emerged: ‘the pursuit of a diagnosis’, ‘adjusting to a new normality’ and ‘the importance of effective support’. These experiences revealed clinical shortcomings and potential improvements to current guidelines and practices to facilitate a more emboldening process for patients.

scholarly journals When the mask comes off: Mothers’ experiences of parenting a daughter with autism spectrum condition

Autism ◽  
2020 ◽  
Vol 24 (6) ◽  
pp. 1546-1556
Author(s):  
James Anderson ◽  
Charles Marley ◽  
Karri Gillespie-Smith ◽  
Leonie Carter ◽  
Ken MacMahon
Keyword(s):  
Qualitative Study ◽  
Interpretative Phenomenological Analysis ◽  
Structured Interview ◽  
Autism Spectrum ◽  
Phenomenological Analysis ◽  
Diagnostic Process ◽  
Autism Spectrum Condition ◽  
Spectrum Condition ◽  
The Impact ◽  
Mothers Experiences

There is limited knowledge and research on the experiences of having a daughter with autism spectrum condition from a mother’s perspective. This study aims to explore the experiences of mothers who care for a daughter with autism spectrum condition, with a particular focus on female autism spectrum condition presentation. Ten mothers of daughters with autism spectrum condition took part in a semi-structured interview. Interpretative phenomenological analysis was used to analyse the data. Five superordinate themes emerged: ‘Girls have autism too’, ‘She’s a chameleon’, ‘The impact of the diagnosis’, ‘Impact on mums’ and ‘Day-to-day life’. These findings add to our knowledge of how female autism spectrum condition presents and of the experiences directly related to being the mother of a daughter with autism spectrum condition. The findings have implications for clinicians that carry out autism spectrum condition assessments and provide insights into areas where additional support can be provided to mothers and daughters. Lay abstract Parents of children with autism spectrum condition report increased stress and difficulties compared with parents of typically developing children. Our knowledge and understanding of how autism spectrum condition presents in autistic females is currently limited and parents of this population may experience challenges when raising their daughter. Given that mothers are often the main caregiver of a child with autism spectrum condition, they may have useful insights into the experiences of parenting a daughter with autism spectrum condition. Therefore, a qualitative study was undertaken to explore what mothers’ experiences are of parenting a daughter with autism spectrum condition. Semi-structured interviews were conducted with 10 mothers of daughters with autism spectrum condition. The interviews were analysed using interpretative phenomenological analysis. Five main themes emerged from the qualitative study (‘Girls have autism too’, ‘She’s a chameleon’, ‘The impact of the diagnosis’, ‘Impact on mums’ and ‘Day-to-day life’). The findings of this study expand our current knowledge of the experiences and challenges faced by mothers raising a daughter with autism spectrum condition. Mothers hold a vast amount of knowledge on their daughters’ autism spectrum condition which could inform the diagnostic process and clinical practice. Considering these results, it is important that clinicians support mothers and the family system around children with an autism spectrum condition diagnosis.

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

Dementia ◽  
2017 ◽  
Vol 18 (3) ◽  
pp. 1089-1107 ◽  
Author(s):  
Helen J Aslett ◽  
Jaci C Huws ◽  
Robert T Woods ◽  
Joanne Kelly-Rhind
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Service Providers ◽  
Phenomenological Analysis ◽  
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.

Relatives’ Experiences of Frontal-Variant Frontotemporal Dementia

2012 ◽  
Vol 23 (2) ◽  
pp. 156-166 ◽  
Author(s):  
Jan R. Oyebode ◽  
Paul Bradley ◽  
Joanne L. Allen
Keyword(s):  
Frontotemporal Dementia ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Analysis ◽  
Mutual Relationship ◽  
Communication Problems ◽  
It Impacts ◽  
Social Settings ◽  
Planning Ability ◽  
The Impact

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?

2016 ◽  
Vol 23 (9) ◽  
pp. 1223-1233 ◽  
Author(s):  
Leonie Lalayiannis ◽  
Nicky Asbury ◽  
Graham Dyson ◽  
Amanda Walshe
Keyword(s):  
Breast Cancer ◽  
Cancer Diagnosis ◽  
Interpretative Phenomenological Analysis ◽  
Breast Cancer Diagnosis ◽  
Phenomenological Analysis ◽  
Primary Cancer ◽  
Structured Interviews ◽  
Cancer Experience ◽  
Secondary Breast Cancer ◽  
The Impact

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.

scholarly journals ‘Do you mean I’m not whole?’: Exploring the role of support in women’s experiences of mastectomy without reconstruction

2016 ◽  
Vol 23 (12) ◽  
pp. 1598-1609 ◽  
Author(s):  
Stephanie Archer ◽  
Fiona G Holland ◽  
Jane Montague
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
The Self ◽  
Structured Interviews ◽  
Younger Women ◽  
Women’S Experiences ◽  
Women's Experiences ◽  
Positive Support ◽  
Unilateral Mastectomy

This study explores the role of others in supporting younger women who opt not to reconstruct their breast post-mastectomy. Semi-structured interviews were conducted with six women diagnosed with breast cancer in their 30s/40s. The women lived in England, had been diagnosed a minimum of 5 years previously and had undergone unilateral mastectomy. An interpretative phenomenological analysis revealed three themes: Assuring the self: ‘I’ll love you whatever’, Challenging the self: ‘Do you mean I’m not whole?’ and Accepting the self: ‘I’ve come out the other side’. The women’s experiences of positive support and challenges to their sense of self are discussed.

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

Dementia ◽  
2017 ◽  
Vol 18 (4) ◽  
pp. 1427-1445 ◽  
Author(s):  
Barbara K Sharp
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
Phenomenological Analysis ◽  
People With Dementia ◽  
Health And Social Care ◽  
Self Worth ◽  
And Coping ◽  
Study Participants ◽  
Person With Dementia ◽  
The Impact

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.

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

2019 ◽  
Vol 19 (2) ◽  
pp. 116-121 ◽  
Author(s):  
Lynn M. Cuthbertson
Keyword(s):  
Qualitative Research ◽  
Interpretative Phenomenological Analysis ◽  
Phase 1 ◽  
Phenomenological Analysis ◽  
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.

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

2017 ◽  
Vol 81 (1) ◽  
pp. 15-23 ◽  
Author(s):  
Channine Clarke ◽  
Caroline Stack ◽  
Marion Martin
Keyword(s):  
Occupational Therapy ◽  
Older People ◽  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
Phenomenological Analysis ◽  
Physical And Mental Health ◽  
Meaningful Activity ◽  
Increased Risk ◽  
Hospital Wards ◽  
The Impact

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.

Compulsive Hoarding: An Interpretative Phenomenological Analysis

2010 ◽  
Vol 38 (2) ◽  
pp. 141-155 ◽  
Author(s):  
Stephen Kellett ◽  
Rebecca Greenhalgh ◽  
Nigel Beail ◽  
Nicola Ridgway
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Structured Interview ◽  
Phenomenological Analysis ◽  
Research Approach ◽  
Compulsive Hoarding ◽  
Behavioural Avoidance ◽  
Physical Environments ◽  
Cognitive Behavioural ◽  
Interview Format ◽  
The Impact

Background: This project aimed to explore the experiences of people who compulsively hoard and how they make sense of their own hoarding behaviours. Method: A total of 11 compulsive hoarders were recruited and interviewed using a simple semi-structured interview format, designed for the purposes of the study. The resulting transcribed interviews were analyzed using interpretive-phenomenological analysis. Results: Four super-ordinate discrete, but interacting, themes were found: (1) childhood factors; (2) the participants' relationship to their hoarded items; (3) cognitive and behavioural avoidance of discard; and (4) the impact of hoarding on self, others and the home environment. The themes as a whole described people entrapped in massively cluttered physical environments of their own making. Efforts at discard appeared consistently sabotaged by cognitive/behavioural avoidance, thereby creating maintaining factors of associated personal distress and environmental decline. Conclusions: The results are discussed in the context of the extant evidence concerning hoarding, the distinct contribution made by the current results and the identified methodological shortcomings of the research approach.

scholarly journals The impact of socio-cultural values on autistic women: An interpretative phenomenological analysis

Autism ◽  
2021 ◽  
pp. 136236132110378
Author(s):  
Stella Mo ◽  
Nina Viljoen ◽  
Shivani Sharma
Keyword(s):  
Intellectual Disabilities ◽  
Cultural Values ◽  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
Cultural Beliefs ◽  
Phenomenological Analysis ◽  
Structured Interviews ◽  
Dominant Culture ◽  
Norms And Values ◽  
The Impact

It is well recognised that culture plays an important role in how people experience the world. However, there is limited knowledge on the impact of socio-cultural norms and values on the lives of autistic women. This qualitative study used individual semi-structured interviews to explore how eight cis-gendered autistic women, without co-occurring intellectual disabilities, describe dominant socio-cultural beliefs, values and norms and their influence on their own sense of self. Findings elucidated three interdependent themes related to the ‘pervasive influence of cultural values’, ‘individualisation as an autistic woman’ and ‘social connectivity’. Autistic women described how they experienced their environments and made choices about their place within the dominant culture and the impact of these decisions on their identities and experience. The findings of this study have implications for the continued need to shift societal and clinical attitudes towards understanding and appreciating diversity among autistic women. Lay abstract Autistic women with average or above intellectual abilities are often overlooked clinically or identified at older ages compared to autistic males. Their experiences can provide insight into the socio-cultural factors that impact on how they develop and are seen by others. This study asked autistic women to describe the culture around them and explore how this has influenced their lived experiences. Individual semi-structured interviews were conducted with eight autistic women without a co-occurring diagnosis of intellectual disabilities. These were used for interpretative phenomenological analysis. Overall, we found three closely connected themes on the pervasive influence of cultural values on autistic women, how autistic women define themselves and the importance of connecting with society. These findings suggest that dominant cultural beliefs, values and norms effect how autistic women are recognised by others and develop their sense of self. Broadening how people think about autistic women in society and clinically may benefit how we identify and support autistic women.

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