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- ItemAn exploration of the lived experience of bulimia nervosa, family-based treatment for anorexia nervosa, and the process of externalisation(University College Cork, 2023) Tennyson, Aisling; Ryan, ChristianSystematic Review Objective: This is the first qualitative systematic review that focuses solely on the experience of bulimia nervosa (BN). Although similarities between various eating disorders (EDs) are well documented in the literature, the uniqueness of the BN experience has also been highlighted, including the feelings of stigma towards the condition which makes help-seeking more difficult. Method: A systematic search of literature was conducted, and findings from 17 qualitative studies were synthesised using meta-ethnography. Results: Five conceptual themes emerged: shame of not reaching the thin ideal; the diagnostic hierarchy with bulimia as anorexia’s “failed sister”; the conflict of bulimia as a friend and a foe; the binge/purge cycle as a dysfunctional coping strategy; and living a double life concealing bulimia. The impact on self-identity was an overarching conceptual theme, highlighting the similarities and distinct differences between the BN experience and other EDs. Discussion: Findings are discussed in relation to theory, research and practice. This review provides a clearer understanding of the lived experience of BN and highlights the need of sensitivity from clinicians and primary care physicians who may be involved in the assessment of ED diagnosis. Major Research Project, Empirical Study Family-Based Treatment (FBT) is recommended as the first line of intervention for young people (YP) with anorexia nervosa (AN). It utilises principles of family therapy, such as externalisation to help separate the YP from their anorexic thoughts and behaviours using language and metaphor. Previous research (Lonergan et al., 2022) highlighted some potential barriers of implementing FBT, so this study explores the experience of FBT with YP themselves. Semi-structured interviews were carried out with adolescents attending FBT for AN enquiring about their overall experience of FBT and externalisation. It was a qualitative study, analysed using Interpretative Phenomenological Analysis (IPA). Four main group experiential themes emerged: why am I here? the beginnings of a hard journey; beacons of hope; and the reward of a new perspective. Externalisation was generally experienced as providing hope and agency in recovery and reduced feelings of guilt and blame among participants. Practitioner Points • AN recovery through FBT is a challenging but transformative journey. Clinician support, psychoeducation about AN, family support, externalisation, and weight restoration, were all useful tools to helping them get their life back through FBT. • Recovery from weight restoration in the final stages of FBT brought about a new perspective, a stark contrast to the denial of AN reported initially. • Externalisation can provide hope and agency in eating disorder recovery and help young people separate their eating disorder thoughts from their own but should be delivered with personal consideration and sensitivity
- ItemExamining the personal and societal factors that inform the development of an asexual identity: a qualitative and quantitative enquiry(University College Cork, 2023) Kelleher, Sinéad; Murphy, Mike; Murphy, RaeganAs the prevalence of those expressing a lack of sexual attraction continues to rise, so too does the need for research to fully uncover the nature of asexuality and the experiences of asexual people. The asexual community, allies and researchers alike, are becoming increasingly concerned with discovering the processes that surround asexual identity development and in doing so, gain a more nuanced understanding of the diverse nature of the orientation. Moreover, while distinctions within the asexual community are becoming increasingly recognised and understood, there remains little empirical evidence in understanding how experiences differ across the asexual spectrum, as well as the intersection of gender roles and romantic identities. Through a series of publications, this thesis examines unique features of asexual identities within the context of both a heteronormative and allonormative society. Study one (chapter three) presents a scoping review of literature and synthesisation of all available evidence in the area of asexual identity development, and highlights gaps present within research. This review outlines how both heteronormative and allonormative beliefs cause many individuals to adopt negative attitudes towards their asexuality and hinders the development of a positive self-concept. Moreover, findings of this study inform the design and protocol for research presented in chapters five, seven and nine, and confirms the absence of a psychometric scale measuring dimensions of asexual identity development. Informed by the findings of the scoping review, study two (chapter five) presents an interpretative phenomenological analysis of the accounts of five self-identified asexual women. Findings from this study highlight the role of romantic orientation within asexual identity development and inspire the next step in this research to compare the experiences of romantic and aromantic asexual people. Through a thematic analysis of the accounts of 99 asexual people, study three (chapter seven) demonstrates the intersection of gender roles and romantic orientation within asexual identity development. By focusing on the diverse nature of the asexual community, this research provides a more comprehensive insight into the complexity of this experience and contributes towards the development of a more robust and psychometrically sound measure. The final study (chapter nine) cumulates in the development and evaluation of the 37-item Assessment of Asexual Identity Development Scale (AAID). As the first psychometric measure of its kind, the AAID measures variables unique to asexuality and accurately assesses dimensions of the lives of asexual people. This thesis acts as a significant contribution to our understanding of the key concepts and experiences that underly the development of an asexual identity. Findings correspond with current theoretical models of both non-heterosexual and asexual identity development, and experiences of minority stress that arise from both a heteronormative and allonormative society. Moreover, this thesis provides an account of the varying developmental trajectories witnessed among people of an asexual identity and presents a more inclusive insight into the experience of being asexual. This research also contributes towards a growing recognition of the variability that exists within the asexual community and elicits the voices of a range of asexual individuals.
- ItemFamily processes and outcomes in congenital heart disease(University College Cork, 2023) Phillips, Lucy; McCusker, Christopher; Doherty, NicolaSystematic Review Objective: Children with congenital heart disease (CHD) are at an increased risk of poorer neurodevelopmental and psychosocial outcomes. Family factors have been increasingly implicated in predicting outcomes, sometimes over illness severity. However, evidence remains equivocal, there is variability in methodological quality and much of the research relies on cross-sectional studies. Methods: The current systematic review focused only on longitudinal studies, reaching threshold quality criteria, and which assessed modifiable and dynamic family factors (e.g. parent mental health, attachment, family functioning) and later child neurodevelopmental, psychosocial and quality of life outcomes. Searches were conducted across CINAHL, Medline-Pubmed, PsychInfo and SCOPUS Web of Science. Results: 14 studies met inclusion criteria and included samples from infancy to adolescence with various degrees of CHD severity. Overall, findings suggested that family factors contribute to later child psychosocial outcomes whereas disease factors appeared to have greater associations with neurodevelopmental outcomes. Disease factors appeared implicated in psychosocial outcomes among younger children, however this influence appeared to decline as children got older. Conclusion: This systematic review highlights the differential impact of family and disease factors on outcomes for children with CHD. Findings strengthen the rationale for family focused interventions for this population. Major Research Project Objectives: Family factors are gaining increasing interest in understanding outcomes for children with congenital heart disease (CHD). In this study, we took a novel qualitative approach to elucidate narratives “with hindsight”, across all of development, in parents of young adults with significant CHD. We further sought to explore whether participation in an early family focused intervention was associated with experiences and constructs. Design: A pluralistic qualitative design was adopted. Focus groups and individual interviews were conducted with 15 parents whose child was now aged between 19-26 years and had a diagnosis of CHD. Thematic Narrative Analysis identified stories of parenting across time and common themes therein. Half of the sample had participated in a family focused intervention in infancy / early childhood and half had not. Results: Two dominant narratives were identified; (1) ‘Surviving and Thriving’ and (2) ‘Living with Ghosts’. These narratives contained six common themes which varied in valence and salience: stories of trauma, living with worry, struggles with normalisation, ripple effects, stories of coping and healing hands. Conclusions: Whilst themes across our total sample were shared, the exposition of these varied and largely in an internally consistent way. Thus, those who coalesced around a ‘Surviving and Thriving’ narrative told stories of resolved trauma, optimism, normalization and problem solving across the many hurdles of development. The ‘Living with Ghosts’ stories suggested these themes remained more active, distressing and an ongoing struggle. We considered various pathways to these differential outcomes. Participation, or not, in an early family focused interventions appeared to have the greatest salience.
- ItemThe fundamental importance of the therapeutic relationship in trauma work and Eye Movement Desensitisation and Reprocessing therapy(University College Cork, 2023) O'Brien, Cara; Ryan, Christian; Dwyer, Aoife; Health Service ExecutiveThe use of Eye Movement Desensitisation and Reprocessing (EMDR) therapy has become increasingly prevalent, particularly in the context of complex trauma. Despite this, there is a paucity of research exploring this particular mode of therapy from the therapist perspective. Anecdotally, there is a lack of access to the phenomenology of what is occurring in the processing of traumatic memories in-session as the use of bilateral stimulation in EMDR produces a physiological response in the client, with the reprocessing typically occurring internally. In this sense, EMDR differs from other forms of trauma therapy and may pose unique challenges for therapists. However, little is known about the lived experience of the therapist using EMDR in therapy. The current study adopted Interpretative Phenomenological Analysis to qualitatively explore the in-session experience of five clinical psychologists who use EMDR in their practice. Four group experiential themes were interpreted from the data, drawn from the personal experiential themes of each participant. The overarching narrative that emerged from the themes was that the premise of EMDR is the release of physiological distress associated with trauma exposure and the therapist needs to allow this physiological processing to unfold organically. The therapist plays an active role in this process through attunement and maintaining client dual attention during bilateral stimulation. However, none of this can occur without trust in the process and the establishment of a strong therapeutic relationship between the therapist and client.
- ItemAutonomy, decision-making, and restrictive practices in daily life: evaluations by people with intellectual disabilities, families, and carers(University College Cork, 2023) Sheerin, James; Larkin, Fionnuala; Dockray, Samantha; Buttimer, John; Health Service ExecutiveBackground The United Nations Convention on the Rights of Persons with Disabilities emphasises the value of supporting independent decision-making for people with intellectual disabilities (PwID), which should be encouraged by service policies. However, support workers may need to limit freedom of PwID in the interest of safety and protection (Van der Meulen et al., 2018a). The present study aimed to investigate how people with moderate-severe ID perceive and evaluate restrictions in their daily lives, and understand their views in the context of those who support them. Method The present study used a qualitative methodology comprised of two focus groups with PwID, as well as semi-structured interviews with 11 support staff, and seven family members. A Patient and Public Involvement model was used to allow PwID to contribute to and give insight in designing interview questions and protocols, as well as interpreting results. Data from each participant group were analysed separately using the Braun and Clarke (2015) model of thematic analysis, using a reflexive, inductive approach. Results Three major themes were identified from the thematic analysis of PwID focus groups: Rules are rules; We’re not children; Institutionalisation. Four major themes were developed in analysis of support staff semi-structured interviews: Best interests; Institutionalisation; Ability and awareness; Official & unofficial restrictions. Four major themes were developed through thematic analysis of the family member semi-structured interviews: Ability and awareness; Institutionalisation; Living a good life; Basic vs psychological needs. Conclusions Findings indicated that health and safety are often prioritised over autonomy of PwID. PwID may be unlikely to self-advocate, as to speak out would threaten how they are perceived by staff, and subsequently how they views themselves. Data from the present study emphasised the need for extended individual discussions between support staff and PwID to elicit their opinions on the care they receive.