“For Me, the Anorexia is Just a Symptom, and the Cause is the Autism”: Investigating Restrictive Eating Disorders in Autistic Women

AbstractAutistic women are overrepresented among people in treatment for Anorexia Nervosa (AN). The current study aimed to: (1) better understand how AN develops and persists in autistic individuals from the perspective of autistic women, parents and healthcare professionals; (2) derive a theoretical model of restrictive eating difficulties in autism. We conducted 44 semi-structured interviews and used Thematic Analysis to identify patterns of meaning across the data. Themes related to sensory sensitivities, social interaction and relationships, sense of self and identity, difficulties with emotions, thinking styles, and a need for control and predictability. We developed a model of potential autism-specific mechanisms underlying restrictive eating difficulties. This study generated novel insights, which have the potential to inform treatment adaptations following empirical testing.

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Exploring the experience of being viewed as “not sick enough”: a qualitative study of women recovered from anorexia nervosa or atypical anorexia nervosa

Journal of Eating Disorders ◽

10.1186/s40337-021-00495-5 ◽

2021 ◽

Vol 9 (1) ◽

Author(s):

Kari Eiring ◽

Trine Wiig Hage ◽

Deborah Lynn Reas

Keyword(s):

Anorexia Nervosa ◽

Eating Disorder ◽

Qualitative Study ◽

Help Seeking ◽

Severity Of Illness ◽

Physical Sign ◽

Structured Interviews ◽

Restrictive Eating ◽

Eating Disorder Symptoms ◽

Atypical Anorexia Nervosa

Abstract Background Despite common misconceptions, an individual may be seriously ill with a restrictive eating disorder without an outwardly recognizable physical sign of the illness. The aim of this qualitative study was to investigate the perspectives of individuals who have previously battled a restrictive eating disorder who were considered “not sick enough” by others (e.g., peers, families, healthcare professionals) at some point during their illness, and to understand the perceived impact on the illness and recovery. Such misconceptions are potentially damaging, and have been previously linked with delayed help-seeking and poorer clinical outcomes. Methods Seven women who had recovered from anorexia nervosa or atypical anorexia nervosa participated in semi-structured interviews. Interviews were transcribed and interpretive phenomenological analysis was used. Results Three main themes emerged: (1) dealing with the focus upon one’s physical appearance while battling a mental illness, (2) “project perfect”: feeling pressure to prove oneself, and (3) the importance of being seen and understood. Participants reported that their symptoms were occasionally met with trivialization or disbelief, leading to shame, confusion, despair, and for some, deterioration in eating disorder symptoms which drove further weight loss. In contrast, social support and being understood were viewed as essential for recovery. Conclusion To facilitate treatment seeking and engagement, and to optimize chances of recovery, greater awareness of diverse, non-stereotypical presentations of restrictive eating disorders is needed which challenge the myth that weight is the sole indicator of the presence or severity of illness.

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Talking about smoking cessation with postnatal women: exploring midwives' experiences

British Journal of Midwifery ◽

10.12968/bjom.2019.27.12.760 ◽

2019 ◽

Vol 27 (12) ◽

pp. 760-766

Author(s):

Rhona Reardon ◽

Sarah Grogan

Keyword(s):

Smoking Cessation ◽

Thematic Analysis ◽

Healthcare Professionals ◽

Structured Interviews ◽

Face To Face ◽

Family Approach ◽

Stop Smoking ◽

Postnatal Women ◽

The Uk

This study explores midwives' experiences of talking to postnatal women about smoking cessation. Face-to-face, semi-structured interviews were held with seven midwives based in the UK. Thematic analysis identified themes which provided understanding as to factors determining discussion of smoking cessation. Six themes were identified, namely postnatal women factors, midwife factors, providing information, involving others, priorities, and whole family approach. Implications for midwives working with postnatal women are discussed, including the need to increase the involvement of other healthcare professionals in supporting postnatal women to stop smoking.

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Communication Partners’ Journey through Their Partner’s Hearing Impairment

International Journal of Otolaryngology ◽

10.1155/2013/707910 ◽

2013 ◽

Vol 2013 ◽

pp. 1-11 ◽

Cited By ~ 6

Author(s):

Vinaya K. C. Manchaiah ◽

Dafydd Stephens ◽

Thomas Lunner

Keyword(s):

Hearing Impairment ◽

Support Group ◽

Thematic Analysis ◽

Healthcare Professionals ◽

Hearing Aid ◽

Process Mapping ◽

Structured Interviews ◽

Qualitative Thematic Analysis ◽

Communication Partners ◽

New Phase

The objective of this study was to further develop the Ida Institute model on communication partners’ (CPs) journey through experiences of person with hearing impairment (PHI), based on the perspectives of CPs. Nine CPs of hearing aid users participated in this study, recruited through the Swansea hearing impaired support group. Semi-structured interviews were conducted, the data were analysed using qualitative thematic analysis and presented with the use of process mapping approach. Seven main phases were identified in the CP journey which includes: (1) contemplation, (2) awareness, (3) persuasion, (4) validation, (5) rehabilitation, (6) adaptation, and (7) resolution. The Ida Institute model (based on professionals’ perspective) was compared with the new template developed (based on CPs’ perspectives). The results suggest some commonalities and differences between the views of professionals and CPs. A new phase, adaptation, was identified from CPs reported experiences, which was not identified by professionals in the Ida Institute model. The CP’s journey model could be a useful tool during audiological enablement/rehabilitation sessions to promote discussion between the PHI and the CP. In addition, it can be used in the training of hearing healthcare professionals.

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Patient and Therapist Perspectives on Treatment for Adults with PTSD from Childhood Trauma

Journal of Clinical Medicine ◽

10.3390/jcm10050954 ◽

2021 ◽

Vol 10 (5) ◽

pp. 954

Author(s):

Katrina L. Boterhoven de Haan ◽

Christopher W. Lee ◽

Helen Correia ◽

Simone Menninga ◽

Eva Fassbinder ◽

...

Keyword(s):

Childhood Trauma ◽

Thematic Analysis ◽

Treatment Process ◽

Stress Disorder ◽

Sense Of Self ◽

Randomised Clinical Trial ◽

Structured Interviews ◽

Treatment Protocols ◽

Imagery Rescripting ◽

Therapist Perspectives

This study aimed to explore patients’ and therapists’ experiences with trauma-focused treatments in patients with posttraumatic stress disorder from childhood trauma (Ch-PTSD). Semi-structured interviews were conducted with patients (n = 44) and therapists (n = 16) from an international multicentre randomised clinical trial comparing two trauma-focused treatments (IREM), imagery rescripting and eye movement and desensitisation (EMDR). Thematic analysis was used to identify key themes within the data. Patients and therapists commented about the process of therapy. The themes that emerged from these comments included the importance of the patients’ willingness to engage and commit to the treatment process; the importance and difficulty of the trauma work, observations of how the trauma focused therapy produced changes in insight, and sense of self and empowerment for the future. In addition, therapists made suggestions for optimising the therapist role in the trauma-focused treatment. This included the importance of having confidence in their own ability, confronting their own and their client’s avoidance and the necessity and difficulties of adhering to the treatment protocols. These reported experiences add further support to the idea that trauma-focused treatments, without a stabilisation phase, can be tolerated and deepens our understanding of how to make this palatable for individuals with Ch-PTSD.

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Initial experiences of family caregivers of survivors of a traumatic brain injury

African Journal of Disability ◽

10.4102/ajod.v4i1.165 ◽

2015 ◽

Vol 4 (1) ◽

Cited By ~ 3

Author(s):

Mandi Broodryk ◽

Chrisma Pretorius

Keyword(s):

Traumatic Brain Injury ◽

Brain Injury ◽

Family Caregivers ◽

Healthcare System ◽

Thematic Analysis ◽

Healthcare Professionals ◽

Subjective Experiences ◽

Structured Interviews ◽

Negative Experiences ◽

Need For Support

Background: There seems to be a paucity of research on the initial subjective experiences of family caregivers of survivors of a traumatic brain injury (TBI). Objective: To explore the challenges that family caregivers face during the initial stages of recovery of a relative who has sustained a TBI. Methods: Thematic analysis was used to explore the findings from semi-structured interviews that were conducted with 12 female family caregivers of relatives who had sustained a TBI. Results: Family caregivers recalled their initial experiences of the shock at hearing the news about their relative’s TBI, negative experiences in hospital and frustrating interactions with healthcare professionals as particularly challenging. Conclusion: The findings of this study emphasise caregivers’ need for support, information and psycho-education, especially from healthcare professionals, from the very beginning stages of recovery from a TBI. Practical and physical needs with regard to admission to and care in the hospital were also highlighted. This research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to improvement of the services provided by the healthcare system based on the experiences of the caregivers who participated in this study.

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Parents’ perceptions and views regarding vaccination: A pilot survey of parents-healthcare professionals and parents non-healthcare professionals

Hellenic Journal of Nursing Science ◽

10.24283/hjns.202046 ◽

2020 ◽

Vol 13 (4) ◽

pp. 60-71

Author(s):

Aglaia Stampoltzi ◽

Εrene Stylianaki ◽

Εfstratia Stavrinou

Keyword(s):

Public Health ◽

Thematic Analysis ◽

Healthcare Professionals ◽

Structured Interviews ◽

Important Public Health ◽

Pilot Survey ◽

Health Measures ◽

Health Visitors ◽

Analysis Technique ◽

Present Pilot Study

Introduction: Children’s immunization has been one of the most important public health measures in the 20th century. However, a number of parents consider the vaccines unsafe and they are skeptical about their use. Aim: The aim of the present study was to investigate parents’ perceptions and views on children’s vaccination. Methods: Twenty parents (2 male and 18 female) were included in the present pilot study which was based on semi-structured interviews. Ten parents (females) were healthcare professionals (nurses and health visitors) and ten (2 males and 8 females) were not healthcare professionals. Interview data were analyzed using the thematic analysis technique. Results: Results show that parents were concerned about vaccination safety, side effects of the vaccines, lifelong coverage of children, immune system overload, commercial purposes of vaccines and validity of information about vaccination. Comparisons between parents who were healthcare professionals and parents who had a different profession showed that the latter were more hesitant and had more misconceptions about vaccines. Conclusions: The decision to vaccinate children or not is a huge responsibility towards every child, but also towards society. Healthcare professionals are able to provide objective information to parents to take informed decisions.

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Health professionals’ attitudes to patients’ use of wearable technology

Digital Health ◽

10.1177/2055207619845544 ◽

2019 ◽

Vol 5 ◽

pp. 205520761984554

Author(s):

Angus Watt ◽

Katherine Swainston ◽

Gemma Wilson

Keyword(s):

Thematic Analysis ◽

Health Professionals ◽

Healthcare Professionals ◽

Wearable Technology ◽

Limited Evidence ◽

Structured Interviews ◽

Convenience Sample ◽

Face To Face ◽

Wearable Technologies ◽

Telephone Interviews

Objective Wearable technologies for health monitoring are becoming increasingly mainstream. However, there is currently limited evidence exploring use from the perspective of healthcare professionals. This study aimed to explore health professionals’ attitudes toward their patients’ use of wearable technologies. Methods A convenience sample of health professionals was recruited to participate in this study. Qualitative semi-structured interviews were carried out either face-to-face, via Skype or telephone. Interviews were recorded using a Dictaphone, transcribed verbatim and analysed using thematic analysis. Results Four themes emerged from the qualitative findings: ‘opportunities for wearable technology’, ‘usability and understanding’, ‘privacy and surveillance’ and ‘cost’. Conclusions The findings portray health professionals’ ambivalence to the use of wearable technology, and it was apparent that whilst the participants considered the technology as being beneficial to patients, they still had concerns for its use.

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A conceptual framework for improving well-being in people with a diagnosis of psychosis

Epidemiology and Psychiatric Sciences ◽

10.1017/s2045796013000462 ◽

2013 ◽

Vol 23 (4) ◽

pp. 377-387 ◽

Cited By ~ 15

Author(s):

B. Schrank ◽

S. Riches ◽

V. Bird ◽

J. Murray ◽

A. Tylee ◽

...

Keyword(s):

Thematic Analysis ◽

Sense Of Self ◽

Well Being ◽

Service Users ◽

Narrative Synthesis ◽

Structured Interviews ◽

Recent Systematic Review ◽

Client Group ◽

Factors Influencing ◽

Group A

Background.Well-being is important for people with severe mental illness, such as psychosis. So far, no clear concept of well-being exists for this client group. A recent systematic review and narrative synthesis developed a static framework of well-being components. The present study aims to validate the static framework and to illuminate the processes by which well-being is experienced by people with psychosis.Methods.Semi-structured interviews were conducted with 23 service users with psychosis exploring their experience of well-being. Thematic analysis was used to analyse the data employing techniques taken from grounded theory to enhance the rigour of the analysis. Respondent validation was undertaken with 13 of the 23 participants.Results.Three superordinate categories of well-being were identified: current sense of self; transition to enhanced sense of self and enhanced sense of self. In the dynamic process of improving well-being the current sense of self undergoes a transition to an enhanced sense of self. The four factors influencing the transition are consistent with the static framework of well-being, hence validating the static framework. In addition, we identified three determinants of current sense of self and seven indicators of enhanced sense of self, which represent the achievement of improved well-being.Conclusions.This study provides an empirically defensible framework for understanding well-being in terms of determinants, influences and indicators. The influences are targets for interventions to improve well-being, and the indicators are outcome domains to assess the effectiveness of services in supporting well-being.

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Worry and time: the unseen costs of informal care

Chronic Illness ◽

10.1177/1742395316647788 ◽

2016 ◽

Vol 12 (4) ◽

pp. 249-260 ◽

Cited By ~ 9

Author(s):

Tanisha Jowsey ◽

Lyndall Strazdins ◽

Laurann Yen

Keyword(s):

Chronic Illness ◽

Social Status ◽

Informal Care ◽

Thematic Analysis ◽

Sense Of Self ◽

Care Recipient ◽

Care Practice ◽

Structured Interviews ◽

Loved One ◽

Informal Carers

Objectives The objective of this study is to examine the experiences of informal carers in terms of how their time spent caring is related to worry. Is worry about a care recipient a care practice, and if so, to what extent it can be understood temporally? Methods Classical phenomenology underpinned this study. Three qualitative studies of people living with chronic illness in Australia were conducted between 2009 and 2013. Semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim. Phenomenological thematic analysis of the data was undertaken. Results Twenty-five informal carers participated. The findings pivot around three interconnected themes: time, worry and cost. Worry was identified as a temporally bound unseen cost to carers that informs carer identity irrespective of culture, ethnicity, or social status. Discussion Worry is a practice that most carers report engaging in and it is one that comes with a temporal cost—it keeps people busy looking after the needs of others during the day and it keeps some people awake when they would rather be sleeping. Worry takes time and effort, it informs people’s construction of their own sense of self, motivates acts of care, and informs carers’ imaginings of what their future and that of their loved one(s) may entail.

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A qualitative exploration of autistic mothers’ experiences II: Childbirth and postnatal experiences

Autism ◽

10.1177/13623613211043701 ◽

2021 ◽

pp. 136236132110437

Author(s):

Sarah Hampton ◽

Joyce Man ◽

Carrie Allison ◽

Ezra Aydin ◽

Simon Baron-Cohen ◽

...

Keyword(s):

Thematic Analysis ◽

Postnatal Care ◽

Healthcare Professionals ◽

Postnatal Period ◽

Structured Interviews ◽

Direct Communication ◽

Autistic People ◽

Qualitative Exploration ◽

Clear Information ◽

Mothers Experiences

Navigating childbirth and the postnatal period may pose additional challenges for autistic people, who can face communication and sensory barriers to accessing healthcare. However, research exploring autistic experiences of parenthood is scarce. Semi-structured interviews were conducted with 21 autistic and 25 non-autistic women 2–3 months after giving birth. Interviews concerned experiences of childbirth, postnatal healthcare and parenting. Thematic analysis revealed that sensory aspects of childbirth could be challenging for autistic participants; participants highlighted the need for sensory adjustments. Autistic participants stressed the importance of clear, direct communication from professionals during the birth. During childbirth and the postnatal period, autistic participants sometimes felt that professionals lacked knowledge of autism and this could hinder receiving appropriate adjustments. Both groups reported several parenting strengths and challenges. The findings indicate ways in which childbirth and postnatal healthcare can be improved for autistic people, including sensory and communication adjustments. They also indicate a need for greater autism-related training for professionals involved in childbirth and postnatal care. Lay abstract Very little research has looked at how autistic people experience childbirth and the first few months of parenthood. We interviewed 21 autistic and 25 non-autistic women 2–3 months after their baby was born, to find out how they experienced giving birth and being a parent. Some autistic participants found sensory aspects of giving birth difficult, such as noise and being touched. They also wanted healthcare professionals to give them clear information while giving birth. Participants sometimes thought that healthcare professionals did not know enough about autism. Autistic and non-autistic participants both found parenthood difficult at times and autistic parents sometimes had extra difficulties, such as with planning and organising. Autistic participants also felt good at understanding their baby’s needs. This research suggests that autistic people would benefit from changes to childbirth and postnatal healthcare such as being communicated with more clearly. It also indicates that healthcare professionals should receive more training about autism.

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