scholarly journals Psychological Impact on Parents of an Inconclusive Diagnosis Following Newborn Bloodspot Screening for Cystic Fibrosis: A Qualitative Study

2019 ◽  
Vol 5 (2) ◽  
pp. 23 ◽  
Author(s):  
Faye Johnson ◽  
Kevin W. Southern ◽  
Fiona Ulph
Keyword(s):  
Cystic Fibrosis ◽  
Interpretative Phenomenological Analysis ◽  
Traumatic Event ◽  
Psychological Impact ◽  
Medical Model ◽  
Structured Interviews ◽  
Health And Illness ◽  
Newborn Bloodspot Screening ◽  
The Impact ◽  
Screening Result

Genetic results of uncertain clinical significance are being returned to parents following newborn screening, representing a paradigm change in how society considers health and illness. ‘Cystic Fibrosis screen positive, inconclusive diagnosis’ (CFSPID) is a designation given to newborns with a positive screening result for, but not a definitive diagnosis of, cystic fibrosis. We explored the psychological impact of receiving a CFSPID result on parents. Five semi-structured interviews were conducted with eight parents whose children have CFSPID. Interpretative phenomenological analysis identified these themes: “The way we were told”: ‘diagnosis as a traumatic event’ focused on how parents were distressed and dissatisfied by the initial screening result communication, ‘Facing and challenging traditional ideas about health and illness’ explored the emerging problem of how CFSPID does not fit the commonly accepted medical model, and ‘Making certainty out of uncertainty’ explored the varying strategies parents developed to adapt to the uncertainty regarding their child’s prognosis. Findings suggest that CFSPID results caused parents’ distress, initiated with the first communication of the result and persisting thereafter. Our data suggests approaches to the delivery of CFSPID results that may reduce the impact. Work is needed to close the gap between healthcare advances and societies commonly held medical model.

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

BMJ Open ◽  
2018 ◽  
Vol 8 (10) ◽  
pp. e021166 ◽  
Author(s):  
Luisa I Rabanal ◽  
John Chatwin ◽  
Andy Walker ◽  
Maria O’Sullivan ◽  
Tracey Williamson
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Help Seeking ◽  
Late Onset ◽  
Psychological Impact ◽  
Young Onset ◽  
People With Dementia ◽  
Health And Social Care ◽  
Young Onset Dementia ◽  
The Uk ◽  
The Impact

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

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 Psychological Impact of NBS for CF

2020 ◽  
Vol 6 (2) ◽  
pp. 27 ◽  
Author(s):  
Jane Chudleigh ◽  
Holly Chinnery
Keyword(s):  
Cystic Fibrosis ◽  
Newborn Screening ◽  
Health Professionals ◽  
False Positive ◽  
Psychological Impact ◽  
Confirmatory Test ◽  
Test Results ◽  
Burden Of Care ◽  
Positive Results ◽  
Screening Result

Newborn screening for cystic fibrosis has resulted in diagnosis often before symptoms are recognised, leading to benefits including reduced disease severity, decreased burden of care, and lower costs. The psychological impact of this often unsought diagnosis on the parents of seemingly well children is less well understood. The time during which the screening result is communicated to families but before the confirmatory test results are available is recognised as a period of uncertainty and it is this uncertainty that can impact most on parents. Evidence suggests this may be mitigated against by ensuring the time between communication and confirmatory testing is minimized and health professionals involved in communicating positive newborn screening results and diagnostic results for cystic fibrosis to families are knowledgeable and able to provide appropriate reassurance. This is particularly important in the case of false positive results or when the child is given a Cystic Fibrosis Screen Positive, Inconclusive Diagnosis designation. However, to date, there are no formal mechanisms in place to support health professionals undertaking this challenging role, which would enable them to meet the expectations set out in specific guidance.

Taught resilience programmes: a case study from the perspective of employees of a large pharmaceutical company based in the UK

2020 ◽  
Vol 2 (2) ◽  
pp. 111-129
Author(s):  
Frances Costello
Keyword(s):  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Structured Interviews ◽  
Content Type ◽  
Individual Resilience ◽  
Personal Resilience ◽  
The Uk ◽  
Almost All ◽  
The Impact

PurposeResearch was undertaken to understand whether taught resilience programmes which highlight the protective factors of resilience would impact individual resilience outcomes. The research focussed on specific resilience dimensions, change agility, physical, emotional and mental resilience, purpose in life and recovery; in an attempt to bridge the gap in understanding whether it is possible through taught programmes to improve resilience through the creation of new habits.Design/methodology/approachThe research was conducted using interpretative phenomenological analysis methods and used semi-structured interviews with 12 participants to understand participants lived experience of a one-day personal resilience programme, conducted within a private global manufacturing organisation.FindingsThe research found that all 12 participants interviewed 12–18 months post-programme made sustainable habits changes increasing personal resilience levels. Participants built new habits into their everyday lives, in the physical dimension exercising more regularly, taking breaks, changes in nutrition and creating better sleep patterns. Through increased understanding of emotional intelligence participants were able to react more favourably to adverse situations and through mental increased resilience focus achieve work and home priorities. In understanding the change journey participants found that they were able to move more quickly through the change cycle. Almost all participants found understanding their life purpose difficult and were not able to give a conclusive answer to what this might be, they found that attending the programme helped reflection in this dimension.Originality/valueThe paper includes an overview of previous resilience research but differs in its examination of the impact of a specific taught resilience programme in a large private sector organisation using IPA methodology.

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.

scholarly journals You don’t see the world through the same eyes any more: The impact of sexual offending work on police staff

2018 ◽  
Vol 92 (4) ◽  
pp. 316-338 ◽  
Author(s):  
Ruth Parkes ◽  
Nicola Graham-Kevan ◽  
Jo Bryce
Keyword(s):  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Sexual Offending ◽  
Post Traumatic Stress ◽  
Structured Interviews ◽  
Workplace Trauma ◽  
Clinical Models ◽  
Post Traumatic ◽  
Two Stages ◽  
The Impact

This paper examines the experiences of police staff in England who work with sexual offence material (SOM). Eleven officers completed a questionnaire then took part in semi-structured interviews. The data were analysed in two stages: Interpretative Phenomenological Analysis was used to illuminate the ‘lived experience’ of participants, and establish a theme structure. Clinical models of workplace trauma were then employed to explore the theme ‘Impact of working with sexual offending’. Impact includes cognitive intrusions and increased suspiciousness. The authors identify where officers’ accounts intersect with nascent symptoms of both Vicarious Traumatisation (McCann and Pearlman, 1990) and post-traumatic stress disorder (PTSD).

scholarly journals It’s how I am . . . it’s what I am . . . it’s a part of who I am: A narrative exploration of the impact of adolescent-onset chronic illness on identity formation in young people

2018 ◽  
Vol 24 (1) ◽  
pp. 40-52 ◽  
Author(s):  
Sarah Wicks ◽  
Zoe Berger ◽  
Paul M Camic
Keyword(s):  
Chronic Illness ◽  
Young People ◽  
Identity Formation ◽  
Narrative Analysis ◽  
Negative Impact ◽  
Western Society ◽  
Developmental Tasks ◽  
Structured Interviews ◽  
Health And Illness ◽  
The Impact

In Western society, identity formation is argued to be one of the key developmental tasks of adolescence. Despite implications for adolescent development, research into chronic illness (CI) onset during this period has been notably sparse. This study aimed to explore how diagnosis impacts on the developmental tasks of adolescence, what role adolescent-onset CI plays in identity formation, and how adolescents incorporate the diagnosis into their identity using a narrative analysis. Individual semi-structured interviews were carried out with eight young people aged 14 to 19years who lived with a diagnosis of a CI diagnosed between the ages of 12 and 16 years. Five core narrative themes emerged: walking a different path, tolerating contradiction, a changed interface with others, locating power and a fluid relationship. Narratives were considered to have been influenced by factors such as the interview context and dominant social narratives concerning health and illness. Adolescent-onset CI was found to have a significant, though not exclusively negative, impact on developmental tasks. The findings are discussed in relation to existing literature and potential clinical implications.

The impact of a disaster on students and staff from a specialist, trauma-informed school in Australia

2018 ◽  
Author(s):  
Emily Berger ◽  
Matthew Carroll ◽  
Darryl Maybery ◽  
Dylan Harrison
Keyword(s):  
Traumatic Stress ◽  
Interpretative Phenomenological Analysis ◽  
Traumatic Event ◽  
Multiple Sources ◽  
Learning And Teaching ◽  
Opportunities For Learning ◽  
Trauma Informed ◽  
Staff Wellbeing ◽  
The Impact ◽  
Specialist School

Children from disadvantaged backgrounds often experience high levels of traumatic stress from multiple sources, however, little is known about their experiences and the responses of their teachers following disasters. The aim of this study was to examine, from the perspective of teachers, the impact of a critical community-wide traumatic event on student and staff wellbeing, student learning and teaching practices at a specialist school for disadvantaged and displaced youth in Australia. Eight school staff were interviewed, including administrative, teaching and support personnel, with their responses interpreted using Interpretative Phenomenological Analysis. Results focused largely on the impact of the event and the resultant relocation of the school, on staff and student health, reduced opportunities for learning, changes to teaching and student engagement, and the strengths and limitations of the trauma-informed approach of the school. Implications for teacher education and school trauma-informed models are discussed.

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

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Rachel Murphy ◽  
Belinda Harris ◽  
Katharine Wakelin
Keyword(s):  
Chronic Illness ◽  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Medical Condition ◽  
Psychological Impact ◽  
Phenomenological Analysis ◽  
Complex Nature ◽  
Content Type ◽  
Incurable Condition ◽  
The Impact

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.

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