Exploring healthcare workers' perceptions of child health research at Kamuzu Central Hospital, Malawi: an interpretative phenomenological analysis.

BACKGROUND: Children's health is a global public health priority and a determinant of development and sustainability. Its effective delivery and further improvements require constant and dedicated research on children, especially by child healthcare workers (HCWs). Studies have shown a high involvement of child HCWs from developed countries in child health research, with an under-representation from the global south in authorship and leadership in international collaborations. To our knowledge, there is very little literature on challenges faced by child HCWs in Malawi in conducting child health research. We sought to explore the lived experiences of child HCWs at Kamuzu Central Hospital (KCH) in Malawi by examining their perceptions of child health research and assessing the availability of child health research opportunities. METHODS: From July 2023 to August 2023, we conducted five key informant interviews with purposively sampled policymakers and 20 in-depth interviews with child HCWs at KCH. The interviews were conducted in English, audio-recorded, and transcribed verbatim. We utilised interpretative phenomenological analysis by reviewing initial transcripts for familiarity, generating codes manually, and refining them into broader themes through comparisons and iterative processes. RESULTS: The analysis revealed three main themes on perceptions of child HCWs at KCH in child health research. These are (i) perceived motivation and challenges for engaging in child health research, (ii) perceptions of resource availability and research opportunities at KCH, and (iii) perceptions of gaps in research training and participation among child HCWs. CONCLUSIONS: Our study has uncovered critical factors influencing the low participation of child HCWs in child health research at KCH. Lack of collaboration, limited financial opportunities, and non-research-based training were the key barriers to participation in child health research among child HCWs at KCH. We advocate for the inclusion of child HCWs at all stages of collaborative health research, transparency on funding opportunities for child health research, and inclusion of research in the training of HCWs. These initiatives can strengthen the participation of child HCWs in child health research and ultimately enhance child health outcomes in Malawi.

The lived experience of weight loss maintenance in young people.

INTRODUCTION: There continues to be an imbalance of research into weight loss and weight loss maintenance (WLM), with a particular lack of research into WLM in young people under 18 years. Failure to coherently understand WLM in young people may be a potential contributor to the underdeveloped guidance surrounding long-term support. Furthermore, no research has investigated young people's preferences around WLM support following the attendance of a residential intensive weight loss intervention from a qualitative perspective. This study explored the influences of WLM in young people following a residential intensive weight loss intervention, considered how interventions could be improved and sought to develop recommendations for stakeholders responsible for designing WLM interventions. METHODS: The context in which this research is framed was taken from a residential Intensive Weight Loss Intervention for young people aged 8-17 years in England. Six semi-structured interviews were carried out to understand the lived experience of WLM, including barriers and enablers influencing WLM, adopting an interpretative phenomenological analysis design. FINDINGS: Three superordinate themes were developed to explain the barriers and enablers to WLM; (1) Behavioural control and the psychosocial skills to self-regulate WLM; (2) Delivering effective social support; and (3) Conflicting priorities and environmental triggers. CONCLUSION: The findings of this research mirror that of other studies of WLM in young people, with the majority of young people struggling to maintain weight loss. However, by exploring the experience of WLM in young people through qualitative means, it was possible to understand the specific motivators and barriers influencing WLM behaviours in this context, providing recommendations to support WLM. PATIENT OR PUBLIC CONTRIBUTION: The interview guide was developed in consultation with a young person from the intervention, and through discussions with the intervention stakeholders (delivery staff and management staff). The interview guide included topics such as knowledge and skills; experience of weight loss; reflections on weight maintenance, and experiences of daily life postintervention. We piloted the interview schedule with one young person who had consented to take part in the research. This first interview was used to check for understanding of questions and to assess the flow of the interview.

Maintaining psychological well-being when living at risk of Huntington's disease: An interpretative phenomenological analysis.

Living at risk of a genetically inherited disease can be a challenging experience causing psychological distress as well as the possibility of the genetic disease leading to physical health problems. Huntington's disease (HD) is a genetic, neurodegenerative condition. It causes motor dysfunction, cognitive decline and, during the progression of the disease, different psychological difficulties are common. A total of 12 participants living at risk of HD were interviewed and interpretative phenomenological analysis methodology was used to understand their experiences of maintaining psychological well-being. This resulted in three themes: (1) "you're constantly in limbo": living in two worlds; (2) "I have to live, just bloody live": managing the possibility of a time-limited lifespan; and (3) "I try and try my hardest to look past the disease": the exhausting quest to keep living well. The findings indicated a need for improved knowledge within professional settings, such as for family doctors, counselors, and other health professionals, specific strategies that genetic counselors can use to support this group, and provision of accessible support and implementation of systemic interventions that would offer support for psychological coping strategies and communication around well-being to the individual and their family unit. Future research could contribute to the formation of such knowledge and the provision of HD-aligned services to help support the psychological well-being of people living at risk of HD.

Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study.

BACKGROUND: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. METHODS: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. RESULTS: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). CONCLUSIONS: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.

Making Sense of Spiritual, Metaphysical, and Eschatological Elements in Delusions: A Qualitative Study Using Interpretative Phenomenological Analysis.

BACKGROUND: Spiritual, metaphysical, or eschatological elements in delusions (SMEDs) are frequent and often subjectively regarded as profound transformational experiences, similar to mystical experiences. This study aimed (1) to explore how SMEDs are experienced and in which aspects they are similar to mystical experiences and (2) to investigate how individuals make sense of SMED. METHODS: Seven participants were interviewed, and their expressions were analyzed using interpretative phenomenological analysis. RESULTS: We found that SMEDs were similar to mystical experiences with regard to alterations in perception of space, time, and unity. Furthermore, SMEDs were accompanied by a sense of enlightenment that however remained ineffable. SMEDs were interpreted from different viewpoints, i.e., as a source of ontological insight, as a mental health issue, as an inspiration for a new orientation in the world, and, for some participants, as an example of the limits of knowledge. Making sense of SMED appeared to follow a lively internal dialogue in which various, sometimes contradictory positions were reflected upon. Participants usually struggled to align the ostensible ontological significance of SMED to the dominating illness explanation. CONCLUSION: SMEDs have similarities to mystical experiences, but integrating SMED into one's own life is challenging. We propose a philosophical, non-pathological interpretation of SMED derived from a novel perspective on mystical experience which may also have some therapeutic utility.

Family caregivers' sense-making of the results of functional neurodiagnostics for patients with Prolonged Disorders of Consciousness.

Functional neuroimaging and electrophysiological assessments can identify evidence of residual consciousness and cognition in patients with prolonged disorders of consciousness (PDOC) who are otherwise behaviourally unresponsive. These functional neurodiagnostics are increasingly available in clinical settings and are recommended by international clinical guidelines to reduce diagnostic and prognostic uncertainty, and thereby assist family caregivers in their best-interests decision-making. Nevertheless, little is known about how family caregivers make sense of the results of these state-of-the-art functional neurodiagnostics. By applying Interpretative Phenomenological Analysis (IPA) to interviews with family caregivers of patients with diagnoses of PDOC who had received a functional neurodiagnostic assessment, we identify three primary themes of sense-making: The special significance of "brain scans"; A dynamic sense-making process; Holding on to hope and holding on to the person. These themes highlight the challenges of helping family caregivers to balance the relative importance of functional neurodiagnostic results with other clinical assessments and identify an ability of family caregivers to hold a contradiction in which they hope for recovery but simultaneously express a rational understanding of evidence to the contrary. We offer several recommendations for the ways in which family caregivers can be better supported to make sense of the results of functional neurodiagnostics.

Becoming a Rare Disease Parent: An Interpretative Phenomenological Analysis of Parent-Caregivers' Postpartum Experiences.

Rare diseases constitute a group of conditions that are individually rare, but in aggregate impact between 3 and 6% of the world population. Many of these conditions present during infancy and involve substantial caregiving responsibilities, often assessed via quantitative measurements. However, few qualitative analyses examine lived experiences of parent-caregivers during the early period of their child's life. The purpose of this study was to examine the meaning that rare disease parent-caregivers apply to the postpartum year using data collected from a semi-structured interview exploring significant experiences over the course of their affected child's life. We utilized an interpretative phenomenological analysis (IPA) approach to analyze 22 interview transcripts from caregivers to children with several inherited metabolic and mitochondrial disorders, as well as an undiagnosed disease. Our analysis yielded three superordinate themes: Reckoning With the Parent-Caregiver Role, Familial Transition, and Adaptation and Adjustment. Subordinate themes expanded upon these concepts and included distinctions between the parent and caregiving identity, communal coping and shifting of family dynamics, as well as meaning applied to child milestones, anticipatory grief, and parental perception of a new normal. Exploration of these themes in relation to existing literature, as well as future research directions for qualitative research on rare disease caregivers, is discussed. Overall, this work contributes to a growing body of literature exploring the parental experience of rare disease across several condition contexts.

The Experience of Phenylketonuria in Pregnancy and the Developing Maternal-Infant Relationship: A Qualitative Study.

Phenylketonuria (PKU) is a rare metabolic condition characterised by an inability to metabolise phenylalanine (Phe), found in many foods. When pregnant with PKU, women must adhere to a strict low-Phe diet. If they do not, foetal abnormalities or pregnancy loss can occur. Pregnancies are therefore closely clinically monitored and dominated by dietary management, leaving little "space" for women's emotional experience. This article explores the emotional impact of PKU during pregnancy and how this effects pre-natal bonding. Based on interviews with six women with PKU, conducted whilst they were pregnant, this article explores their unusual and previously undocumented experience. Image-making during interviews allowed women to uncover aspects of their experience that might otherwise have remained hidden. Interpretative phenomenological analysis of the transcripts and images generated five themes summarising the women's experiences. Some themes reiterated findings from previous studies, for example, the huge cognitive burden associated with PKU pregnancies and the importance of both expert and informal support to successful pregnancy management. However, new understanding also emerged, including rich description of the emotional load of these pregnancies and strategies that women use to manage this. Anxiety about baby safety was central to their experiences, and the effect of this on pre-natal bonding was explored. This article calls for increased formal and informal support for women with the emotional aspects of their PKU pregnancies, for example, the creation of "attachment-aware" services that support women with their anxiety, promoting strong pre-natal attachment and subsequently protecting maternal and infant mental health throughout pregnancy and beyond.

An Interpretative Phenomenological Analysis That Seeks to Describe and Understand the Personal Experience of Burnout in General Practitioners.

Minimal research has explored the personal experience of burnout in doctors from any medical speciality. Consequently, we aimed to provide a relatable description and understanding of this globally recognised problem. We employed an interpretative phenomenological analysis (IPA) of face-to-face interviews with seven general practitioners (GPs) in Northern Ireland, having selected interviewees best able to speak about burnout. We sought to understand how these GPs understood their burnout experiences. Our participants' continuous work involved more than their busy weekdays and also working on supposedly off evenings and weekends. In addition, draining intrusive thoughts of work filled most, if not all, of their other waking moments. There was no respite. Work was 'always there.' Being constantly busy, they had no time to think or attend to patients as doctors. Instead, participants were going through the motions like GP automatons. Their effectiveness, efficiency, and caring were failing, while their interactions with patients had changed as they tried to conserve their now-drained energy and empathy. There was no time left for their families or themselves. They now "existed" to continuously work rather than "living" their previous, more balanced lives that at one time included enjoying being a doctor. Worryingly, participants were struggling, isolated, and vulnerable, yet unwilling to speak to someone they trusted. We intend our burnout narrative to promote discussion between medical colleagues and assist in its recognition by GPs and other doctors. Our findings warn against working excessively, prioritising work ahead of family and oneself, and self-isolation rather than seeking necessary support.

Supporting Individuals With an Acquired Brain Injury: An Interpretative Phenomenological Study Exploring the Everyday Lives of Caregivers.

Acquired brain injury (ABI) is one of the most common causes of disability and death globally. Support from informal caregivers is critical to the well-being and quality of life of people with ABI and supports the sustainability of global health and social care systems. This study presents an in-depth qualitative analysis of the experiences of eight British informal caregivers supporting someone with ABI. Semi-structured interviews were conducted with narratives transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Three superordinate themes were generated: making sense of brain injury; being consumed by caregiving; and, the changing self. These data highlight the impact of caregiving on the caregiver's illness perceptions and sense of self. By identifying negative and positive changes in the caregiver's sense of self, and dilemmas regarding the care recipient's behaviour, we address less understood aspects of caregiver experiences. Caregiving can pose both challenges to the caregiver's sense of identity and an opportunity for self-growth. Some caregivers exhibit resilience throughout their journey, with post-traumatic growth more apparent in the later stages of caregiving. Illness perceptions shape caregiver well-being and family dynamics and indicate the need to address stigmatisation and discrimination faced by ABI survivors and caregivers. Although some caregivers acquired positive meaning and enrichment from their caregiving, previously described challenges of ABI caregiving are supported. Overall, our findings support the need for timely psychological/mental health support for caregivers, caregiver education, and the provision of short breaks from caregiving.

Exploring the experiences of people with obesity and post-bariatric surgery patients after three months using the mindful eating reflective practice: An interpretative phenomenological analysis.

Background: Experiential dimensions of Mindful Eating Practices are scarce in the literature. Aim: The study focuses on thirteen individuals with clinical obesity and nine post-bariatric surgery patients who engaged in MERP over three months. Methods: The present research utilized Interpretative Phenomenological Analysis (IPA) as the analytical framework of interviews. Results: Four overarching themes emerged from the analysis: 1. "Enhanced Awareness of Eating": This theme underscores MERP's central emphasis on cultivating heightened mindfulness during food consumption, highlighting the importance of being present at the moment while eating; 2. "Facilitating the Transition to Healthier Eating Habits": This theme explores how MERP influences participants' dietary choices, eating pace, portion control, and overall enjoyment of meals. It reveals that MERP encourages individuals to reflect on their eating habits and transition towards healthier choices; 3. "Diverse Perspectives on Satisfaction with MERP": Within the context of MERP, participants held varied interpretations of satisfaction. Some encountered practical limitations or engaged in reflective self-examination, while others found sensory satisfaction, enhancing their overall eating experiences; and 4. "Utilization and Development of MERP": This theme delves into participants' patterns of using MERP. It reveals a tendency to avoid MERP in the morning, a gradual decline in its usage over time, and a preference for an electronic version of the practice. Conclusion: The MERP shows promise in improving overall eating habits by enhancing enjoyment of food, increasing awareness of body cues, promoting healthier choices, and encouraging mindful eating practices. These findings provide valuable insights for future research and the refinement of clinical tools aimed at effective weight management and the promotion of sustainable healthy eating practices by effectively addressing a significant gap in our understanding of the experiential facets of eating practices.

'They tried to evil me': An explanatory model for Black Africans' mental health challenges.

This paper explores the explanatory models of mental challenges among Black Africans in England. It argues that understanding these models is critical for providing culturally appropriate care to this population. The study employed qualitative methodology, and interpretative phenomenological analysis (IPA). Twelve mental health service users who are living in England and self-identified as first or second-generation Black Africans were purposively selected. The data were gathered using face-to-face semistructured interviews. Data were manually analysed in accordance with IPA concepts of searching for common, unique and idiosyncratic themes across transcripts. The findings revealed three themes Black Africans associated to their explanatory model of mental health challenges: complexities of migration, African-centred worldview and negative life experiences. To help alleviate the Eurocentric nature of mental health practice in England, it is hoped that this explanatory model will become an integral part of mental health practice in England and around the world.

"You go in heavy and you come out light": An interpretative phenomenological analysis of reflective practice experiences in an Irish infant mental health setting.

Reflective practice (RP) is a core component of infant mental health (IMH); however, there is limited published empirical research on IMH practitioner experiences of RP. This two-stage, qualitative, multimodal study explored Irish IMH practitioners' experiences of RP spaces. Visual and verbal data from seven individual interviews and a participatory arts-based focus group with seven participants (eight participants in total, all white Irish females) were analyzed using Interpretative Phenomenological Analysis. Five group experiential themes (Just get on with it; What should I be bringing to this space?; Who are my "hands"?; Taking a step back; and You go in heavy and you come out light) were generated by the analysis. These were used to construct a developmental and experiential model of learning in an RP space. The themes portray how a practitioner's RP experience can change over time: influenced by prior experiences and practice development stage, practitioners move from initial uncertainty, anxiety, and perceived pressure in a busy workload to developing the trust and ability to be vulnerable in an RP space. Through relationships (supervisor/facilitator or group members), a shared safe space can be created, which addresses practitioners' needs for containment, allowing for experiential learning through a process of transformational moments.

La práctica con reflexión (RP) es un componente central de la salud mental infantil (IMH), sin embargo, existe una limitada investigación empírica publicada sobre las experiencias de RP de los profesionales de la práctica de IMH. Este estudio multimodal, cualitativo, en dos etapas, exploró las experiencias de los espacios de RP de profesionales irlandeses en la práctica de IMH. Se analizó la información visual y verbal de siete entrevistas individuales y un grupo de enfoque participativo con base artística de siete participantes (ocho participantes en total, todas mujeres blancas irlandesas) usando el Análisis Fenomenológico Interpretativo. El análisis generó cinco temas de la experiencia de grupo (Manos a la obra; ¿Qué debo aportar a este espacio?; ¿Quiénes son mis 'manos'?; Dar un paso atrás; y Se comienza pesado y se termina liviano). Estos temas se usaron para construir un modelo de desarrollo y experimental de aprendizaje dentro de un espacio de RP. Los temas describieron cómo la experiencia de RP de un profesional de la práctica puede cambiar a lo largo del tiempo: influida por experiencias previas y un estado de desarrollo práctico, los profesionales de la práctica pasan de la incertidumbre inicial, la ansiedad y la percibida presión dentro de una ocupada carga de trabajo a desarrollar la confianza y la habilidad de ser vulnerable dentro de un espacio de RP. A través de relaciones (supervisor/facilitador o miembros de grupo), se puede crear un espacio seguro compartido, el cual aborda las necesidades de contención de los profesionales de la práctica, permitiendo el aprendizaje experimental a través de un proceso de momentos transformacionales.

Facilitating transformative endings: Therapists' experience of ending therapy with people with intellectual disabilities-An interpretative phenomenological analysis.

BACKGROUND: Endings in therapy are discussed widely in mainstream literature, however, there is only a small amount of research that considers endings in therapy for people with intellectual disabilities. METHODS: Eight therapists were interviewed about their experience of ending therapy with people with intellectual disabilities. Interviews were analysed using Interpretative Phenomenological Analysis (IPA). RESULTS: Four superordinate themes associated with endings that go well were identified: 'recognising', 'readying', 'reframing' and reflecting', with a fifth theme reflecting endings that were less successful. Participants worked hard to offer transformative experiences of endings and an overarching 'super-superordinate' theme of 'facilitating transformative endings' encompassed the findings. CONCLUSIONS: Endings are a multi-faceted component of psychological therapy with people with intellectual disabilities and are significant for both client and therapist. We discuss implications for therapy adaptations and future research.

Infant feeding for women with an eating disorder: An interpretative phenomenological analysis.

Mothers with eating disorders can face additional challenges with infant feeding, and there is evidence they are likely to cease breastfeeding earlier than intended. However, there is little research exploring this. The present study used interpretative phenomenological analysis to explore the lived experience of infant feeding for mothers suffering from or recovering from an eating disorder. Semistructured interviews were conducted with six women-five who had breastfed and one who formula-fed. The women experienced two incompatible worlds-motherhood and an eating disorder. Tensions were sometimes resolved by reducing eating disordered behaviour alongside immersion in motherhood. Two participants did not find infant feeding particularly important for their journey into motherhood. Four recounted a positive shift in their relationship to their body through breastfeeding and felt their embodied experience of mothering provided a route out of eating disordered behaviour. However, doubts about their mothering and infant feeding capabilities could be amplified by feeling mistrusted by others and by the relative silence around eating disorders within maternity care services. Respectful dialogue with health care professionals was particularly valued where this occurred. Although long-term outcomes for the participants are unknown, the study suggests women with a history of eating disorders can form successful breastfeeding relationships and may be motivated to engage in collaborative risk assessment. However, they need support in managing emotional challenges. Training around eating disorders for maternity care professionals is likely to be useful for enhancing confidence in engaging mothers proactively to share concerns about eating, weight and body shape.

Emily's struggle for dignity: An idiographic case study of a woman with multiple sclerosis.

Dignity is one of the essential values and central concepts in nursing care. Dignity can be threatened due to radical life changes; therefore, this idiographic case study aimed to explore the sense of dignity experienced by a woman with multiple sclerosis. An interpretative phenomenological analysis was adopted, using data collected through a face-to-face semistructured interview with Emily, a 45-year-old woman. The study was approved by the local ethics committee. Six personal experiential themes were identified: To be ruled by a sick body; Silent progression; Loss of independence as a burden for the family; Will to fight for the meaning of life; Maintaining dignity-in-relation; Dignified care in a period of greater vulnerability. Emily's dignity is based on the effort to fight for a meaningful life, utilization of her full potential, maintain independence in activities of daily living and support in relationships. Continuous changes in functional ability, loss of self-control and an uncertain future have a negative impact on the experience of her dignity. In the context of dignified health care, she considers individual care and maintaining autonomy important. The idiographic case study can contribute to a better understanding of the experience of a woman suffering from multiple sclerosis. It is possible to carry out interventions that aim to support her dignity, improve her quality of life and contribute to individually oriented health care.

Nurses' experiences of caring for nursing care-dependent ICU patients: A qualitative study.

BACKGROUND: Nursing care dependency is a key, yet under-studied, nursing phenomenon. Patients in intensive care units are highly dependent on nursing care. Patients find dependency challenging, experiencing feelings of powerlessness and shame. The nurse-patient care relationship can influence patients' perception of dependency. Understanding how nurses experience their care for dependent patients is crucial, as nurses might not always grasp the impact of their actions on patients' dependency experiences. AIM: To explore and interpret ICU nurses' perceptions of patients' nursing care dependency and their experiences in caring for nursing care-dependent patients. STUDY DESIGN: A qualitative interpretative phenomenological study inspired by Merleau-Ponty's philosophical stance was conducted using focus groups with nurses who had been caring for adult patients for at least 6 months in ICUs of two hospitals. Data analysis followed Smith et al.'s guidance. Researchers immersed themselves in the transcripts, noted individual's experiences before transitioning to shared insights, coded significant phrases and generated themes and superordinate themes. RESULTS: Four focus groups were conducted with 18 nurses with widely ranging ages and work experience. Four superordinate themes emerged: 'Time and context define dependency', 'Empathetic relationships help nurses understand patients' experience of dependency', 'Trusting nurse-patient relationships change the dependency experience' and 'Nurses' skills help patients to recover independence'. CONCLUSION: This study increases critical care nurses' awareness of the overlooked phenomenon of caring for nursing care dependent patients and offers them an opportunity to reflect on their care for dependent patients and adapt it to patients' experiences. Further studies are needed with nurses and patients in different ICUs, cultures and countries, to gain a broader picture of experiences of nursing care dependency. RELEVANCE TO CLINICAL PRACTICE: ICU nurses need strong relational skills to offer high-quality care for dependent patients, facilitating meaningful nurse-patient relationships based on empathy and trust. These relationships can significantly impact the patient's experience of dependence.

The lived experiences of rural HIV social workers.

HIV service providers are the primary implementers of HIV care services, but rural HIV service providers are under researched. We used an interpretative phenomenological analysis to explore rural HIV service providers' lived experiences of working in HIV care, who work in a rural region of a Midwestern state in the United States. From July to August 2019, 15 HIV service providers participated in a one-hour semi-structured telephone interview that elicited their experiences working in the rural HIV care continuum. Participants were tired of constantly educating and working to reduce HIV stigma; however, they received support from family and friends once they educated them about HIV. Participants felt they lacked control over systems and they developed emotional-based coping to address constant occupational stressors. Findings highlight the importance of resiliency and advocacy research and practice across ecological levels.

Neurologists' lived experiences of communicating the diagnosis of a motor neurodegenerative condition: an interpretative phenomenological analysis.

BACKGROUND: Receiving the diagnosis of a motor neurodegenerative condition (MNDC) can be a life-changing experience. Although several studies of individuals' experiences have indicated dissatisfaction with aspects of how an MNDC diagnosis was communicated, few studies have addressed doctors' experiences of breaking bad news for these conditions, especially from a qualitative perspective. This study explored UK neurologists' lived experience of delivering an MNDC diagnosis. METHODS: Interpretative phenomenological analysis was used as the overarching method. Eight consultant neurologists working with patients with MNDCs took part in individual, semi-structured interviews. RESULTS: Two themes were constructed from the data: 'Meeting patients' emotional and information needs at diagnosis: a balancing act between disease, patient and organization-related factors', and 'Empathy makes the job harder: the emotional impact and uncovered vulnerabilities associated with breaking bad news'. Breaking the news of an MNDC diagnosis was challenging for participants, both in terms of achieving a patient-centred approach and in terms of dealing with their own emotions during the process. CONCLUSIONS: Based on the study's findings an attempt to explain sub-optimal diagnostic experiences documented in patient studies was made and how organizational changes can support neurologists with this demanding clinical task was discussed.

'It is easier to not allow them to see your disability straight away, to see you as a person': An Interpretative Phenomenological Analysis of video gaming from the perspectives of men with Duchenne Muscular Dystrophy.

BACKGROUND: Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy. AIM: To explore the lived experience of video gaming from the perspective of young men with Duchenne Muscular Dystrophy. DESIGN: Interpretative Phenomenological Analysis approach involving in-depth interviews using a topic guide that focused on social media broadly, with reference to video gaming. Sequential interviewing was undertaken to support participation regarding fatigue and tiredness, symptoms of Duchenne Muscular Dystrophy. SETTING/PARTICIPANTS: Participants were purposefully recruited from a hospice in the North of England. Twitter was used to support recruitment. Eight young men with Duchenne Muscular Dystrophy were recruited to the study. RESULTS: Five themes were developed; 'gamer as a shared and accepted identity', 'an existential and bodily escapism', 'introspection through video gaming', 'video gaming as a release' and 'when life gives you few choices-video game'. Motivations for engagement with video gaming are diverse and reflective of the situated perspectives of young men with Duchenne Muscular Dystrophy. CONCLUSIONS: An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy.