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Purpose: The purpose of this study is to explore the experiences of parents of children with type 1 diabetes mellitus (T1DM) who are living in rural areas. Individuals living in rural areas face barriers to accessing health care that lead to significant health disparities with increased morbidity and mortality. There is a need to understand the unique experiences of those living in rural communities to support their health needs. Methods: In this qualitative study, a convenience sample of 11 parents of children who were diagnosed with T1DM in the last 10 years living in Vermont were recruited through connections with local health professionals and family support networks and interviewed about their experiences. Interviews were transcribed verbatim and analyzed using Braun and Clarke’s 6-step approach to reflexive thematic analysis. Results: Five themes were identified to capture the experience of parenting a child with T1DM in a rural community, including enduring emotional traumas, living life on call, adapting to everyday challenges, lacking a safety net for support, and finding a rhythm. Conclusions: Although findings echo many themes found in previous studies on experiences of parents of children with T1DM, participants also identified unique barriers such as physical distance from formal and informal support systems, unreliable and/or insufficient technological resources, and lack of understanding of T1DM by their communities, including among child care and schools. Diabetes care and education specialists working with families living in rural areas must explore ways to educate key supports to these families to minimize isolation, stigma, and burnout among parents.

Objective To explore birth stories of autistic women to understand how they make sense of the experience of childbirth. Design Narrative analysis. Setting Online interviews. Participants Sixteen women on the autism spectrum shared 19 birth stories. Methods Participants were recruited from online autism forums and were invited to share their birth stories via online asynchronous interviews. Using Burke’s approach to narrative analysis, we identified five elements within each story, including Scene (when/where), Agents (who), Act (what), Agency (how), and Purpose (why). We explored parts of the narratives where two or more elements were out of balance with each other. Results Tension most often occurred when actions taken by the health care team (Act) were out of balance with their approach to care (Agency), which left participants feeling that their concerns were minimized, their wishes were ignored, and they were left out of critical communication and education. Participants also struggled when their own autistic traits (Agent), such as sensory sensitivities, were out of balance with the birth environment (Scene), which impaired their ability to communicate with providers and participate in the birth. Conclusion Poor communication, untreated pain, and sensory overload dominated the birth narratives of participants. Nurses should trust women’s reports of pain and anxiety because autistic women may appear calm even when in severe distress. Environmental adjustments, such as dimming the lights, can help minimize sensory overload. Nurses need to provide thorough and nonjudgmental education about the birth process to ensure that autistic women feel safe and in control and do not withdraw from care.

Pervasive feelings of social isolation and loneliness have been longstanding among up to half of older adults, and have received increased attention amid the COVID-19 pandemic. Programs to address loneliness and facilitate meaningful connections are vital for physical and mental wellbeing. The purpose of this study was to explore older adults' experiences participating as volunteers in the

Autistics are more likely than neurotypicals to be gay, lesbian, bisexual, asexual, and other sexual orientations. Autistics and sexual minorities represent populations at high risk for depression, anxiety, and suicidality. Little is known about the experiences of individuals living at this intersection. In this phenomenology, 67 individuals who identified as autistic sexual minorities participated in online interviews to describe the meaning of their experiences. Six themes emerged, including: self-acceptance is a journey; autistic traits complicate self-identification of sexual orientation; social and sensory stressors affect sexual expression; feeling misunderstood and isolated; challenges finding mutually satisfying relationships; and difficulty recognizing and communicating sexual needs. Autistic sexual minorities experience a "double minority" status that complicates identity formation and increases vulnerability in sexual relationships.

This study describes the development and psychometric evaluation of a new self-report measure of social cognition: the Theory of Mind Inventory:Self-report-Adult (ToMI:SR-Adult). Adults with autism (or a suspicion of autism; n = 111) and typically developing adults (n = 109) completed a demographic questionnaire and the ToMI:SR-Adult online. Both quantitative and qualitative self-reports of one’s own theory of mind functioning were collected. The ToMI:SR-Adult performed well under all examinations of reliability and validity (internal consistency, accuracy of classification, contrasting-groups). The qualitative data confirmed impressions of validity and revealed that the adults in our sample had high levels of self-insight regarding their own theory of mind. The ToMI:SR-Adult is offered as a promising research and clinical tool for the assessment of social cognition in adults.

Autistic meltdowns have been explored from the perspectives of parents, but there is a paucity of research on the experience of meltdowns from the autistic perspective. Little is known about how adults experience these events. In this descriptive phenomenological study, we conducted online interviews with 32 autistic adults on the experience of having a meltdown. Data were analyzed using Colaizzi’s seven-step method. Six themes emerged from data that captured the essence of meltdowns, including feeling overwhelmed by informational, sensory, social, or emotional stressors; experiencing extreme emotions, such as anger, sadness, and fear; losing logic, including challenges with thinking and memory; grasping for self-control, in which participants felt out of touch with themselves; finding a release for emotions, often described as an “explosion” of external behaviors or self-harm; and minimizing social, emotional, or physical harm by avoiding triggers or self-isolating when possible. Findings highlight the painful and distressing internalized experience of meltdowns beyond behavioral characteristics. Participants shared examples of internal meltdowns, in which external characteristics of meltdowns were camouflaged. Participants also suggested that meltdowns may serve a functional role in regulating emotions and making one’s voice heard. Meltdowns are diverse experiences that hold different meaning to different people. Lay abstract There is not a lot known about what it feels like for autistic people to have a meltdown. Past research has focused on what meltdowns are like for parents and what meltdowns look like from the outside without understanding what it is like for the person having the meltdown. We asked 32 autistic adults about what it is like for them to have a meltdown. We asked them to tell us about their thoughts and feelings about having a meltdown. Then, we looked for themes in their responses that summarized the meltdown experience. Our findings showed that meltdowns hold different meaning to different people. During a meltdown, we found that most autistics described feeling overwhelmed by information, senses, and social and emotional stress. They often felt extreme emotions, such as anger, sadness, and fear, and had trouble with thinking and memory during the meltdown. Participants described trying to stay in control of themselves, often feeling like they were not themselves during meltdowns. They described the meltdown as a way of letting go of or releasing the extreme emotions they felt. Participants tried to stay away from things or people that might trigger a meltdown or tried to make sure they were alone if they felt a meltdown may be coming as a way of avoiding harm—including harm to their bodies, their emotions, and their relationships. These findings offer an important look into what it is like for autistic adults to have meltdowns from their own point of view.

Background With the US facing an opioid epidemic, undergraduate nursing students are increasingly encountering patients with opioid use disorder in the clinical setting. Yet, nursing curriculums have not adapted to meet this need. Previous research indicates students are exposed to negative messages that might influence their views about patients with opioid use disorder. Objectives The purpose of this study was to examine nursing students' experiences encountering patients with opioid use disorder in the clinical setting, their attitudes about their encounters, and their perceptions of their educational preparedness to care for this population. Method Purposive sampling was used to identify participants. Semi-structured interviews were conducted until saturation. Krippendorff's method for qualitative content analysis was used to cluster units within the data to identify emergent themes. Participants Eleven senior nursing students from a public university in New England participated. Results Analysis revealed six themes, including: navigating ethical dilemmas, gaining comfort with time and experience, avoiding the “elephant in the room,” learning from real-world scenarios, witnessing discriminatory care, and recognizing bias and stigma. Conclusions Students were most likely to experience bias and internal conflict in maternity clinical rotations. Education should include practical communication strategies to reduce avoidance behaviors among nursing students as well as techniques to manage difficult situations and reduce moral distress. Nurses must be mindful of their power to influence students and should model non-judgmental language and behavior. Students ultimately expressed a desire to provide informed and empathetic care.

Delayed diagnosis of autism spectrum disorder (ASD) into adulthood is common, and self-diagnosis is a growing phenomenon. This mixed methods study aimed to explore barriers to formal diagnosis of ASD in adults. In a qualitative strand, secondary analysis of data on the experiences of 114 individuals who were self-diagnosed or formally diagnosed with ASD in adulthood was used to identify barriers. In a quantitative strand, 665 individuals who were self-diagnosed or formally diagnosed in adulthood were surveyed online to examine incidence and severity of barriers. Fear of not being believed by professionals was identified as the most frequently occurring and most severe barrier. Professionals must strategize to build trust with individuals with ASD, particularly when examining the accuracy of self-diagnosis.

A growing older adult population requires educational programs which prepare nursing students to care for and increase their interest in working with this population. Faculty at a large public university developed a course specific to gerontology to address this need, including designing a service-learning intervention entitled Aging is Very Personal. The purpose of this study was to explore the impact of this course on student attitudes towards working with older adults. Using a convergent parallel mixed-methods design, 79 students completed pre-course and post-course quantitative surveys and open-ended questions using the Senses Framework survey. Quantitative data were analyzed using a paired-sample t-test. Qualitative data were analyzed using Krippendorff's method of qualitative content analysis. Participants showed statistically significant positive changes in attitudes towards working with older adults on 11 of 15 items. Qualitative findings included 5 themes: acknowledgement of preconceptions prior to course; positive shift in perceptions about older adults; growing interest in working with older adults; appreciation of gerontological nursing as a highly skilled profession; and service-learning as a valuable opportunity to form connections with older adults. A designated course in gerontology with a service-learning component can markedly improve student attitudes towards working with older adults.

Many individuals with autism spectrum disorder are not diagnosed until adulthood, yet little is known about their experiences. This descriptive phenomenological study aimed to explore the experience of realizing a diagnosis of autism spectrum disorder in adulthood. A purposive sample of 77 adults was asked to describe their experiences of realizing a diagnosis as adults via an open-ended online survey. Data were analysed using Colaizzi's method and six themes were derived: feeling different from others, riding an emotional rollercoaster, striving to accept themselves, strategizing to improve their lives, maintaining normalcy, and wandering into the future. Nurses must realize the importance of screening for depression following a new diagnosis. Barriers to reaching a formal diagnosis should also be evaluated.

BACKGROUND: More than 20% of individuals experience a mood disorder in their lifetime. Qualitative studies have explored the experience of being a partner to an individual with a mood disorder, but these studies remain isolated pieces of a larger puzzle. AIMS: In this metasynthesis, I aimed to integrate current qualitative research to describe the experience of being a partner to an individual with a mood disorder. METHOD: A systematic search was conducted to identify qualitative research. Noblit and Hare’s meta-ethnography was used to translate key metaphors from individual studies into a single set of metaphors to describe the experience. RESULTS: Results indicated that these partners are disenfranchised caregivers balancing their own needs with partners’ perceived and reported needs to strive for a stasis of guarded stability. CONCLUSIONS: Future research must explore ways to support these partners and include them in the health care team.

Several qualitative studies explore the experience of being a partner to an individual with schizophrenia spectrum disorder, but these studies remain isolated "islands of knowledge." This meta-ethnography aimed to synthesize current qualitative studies using Noblit and Hare's method. Thirteen studies were identified for inclusion. Three overarching themes were revealed: unmet expectations of relationship, renegotiating relationship roles, and separation versus togetherness. Themes interacted as a cycle with separation versus togetherness as temporal endpoints. Partners also renegotiated relationships with mental health professionals to accommodate unmet expectations. Leverage points for intervention were identified.

One in 68 Americans has autism spectrum disorder (ASD), and diagnosis is often delayed into adulthood in individuals without comorbid intellectual disability. Many undiagnosed adults resort to self-diagnosis. The purpose of this descriptive phenomenology was to explore the experience of realizing a self-diagnosis of ASD among 37 individuals who were not formally diagnosed. Results revealed five themes: feeling "othered," managing self doubt, sense of belonging, understanding myself, and questioning the need for formal diagnosis. Healthcare professionals must have an understanding of self-diagnosis to help individuals transition to formal diagnosis and to adequately educate, support, and screen this population for comorbidities.

Many individuals with autism spectrum disorder are not diagnosed until adulthood, yet little is known about their experiences. This descriptive phenomenological study aimed to explore the experience of realizing a diagnosis of autism spectrum disorder in adulthood. A purposive sample of 77 adults was asked to describe their experiences of realizing a diagnosis as adults via an open-ended online survey. Data were analysed using Colaizzi's method and six themes were derived: feeling different from others, riding an emotional rollercoaster, striving to accept themselves, strategizing to improve their lives, maintaining normalcy, and wandering into the future. Nurses must realize the importance of screening for depression following a new diagnosis. Barriers to reaching a formal diagnosis should also be evaluated.

Millions face the challenges of caregiving for a loved one with dementia. A classic Glaserian grounded theory methodology was used to discover the problem that caregivers of individuals with dementia face at the end of life and how they attempt to resolve that problem. Data were collected from a theoretical sample of 101 participants through in-person interviews, online interviews, book and blog memoirs of caregivers, and participant observation. Constant comparative method revealed a basic social psychological problem of role entrapment. Caregivers attempt to resolve this problem through a 5-stage basic social psychological process of rediscovering including missing the past, sacrificing self, yearning for escape, reclaiming identity, and finding joy. Health care professionals can support caregivers through this journey by validating, preparing caregivers for future stages, and encouraging natural coping strategies identified in this process. This study provides a substantive theory that may serve as a framework for future studies.

As the prevalence of dementia continues to grow, informal caregivers face unique challenges as they approach the end of life, and access to support and palliative care is often limited. I used a phenomenological approach to explore the experiences of caregivers actively seeking formal end-of-life care, in particular hospice care, for a loved one with dementia. In-depth interviews with 11 caregivers about 14 patients revealed five themes, including: setting the stage for heartbreak, reaching the boiling point, getting through the front lines, settling for less, and welcoming death. Nurses must recognize the complex needs of caregivers, educate caregivers on the disease process, and adjust to palliative goals sooner to meet the needs of caregivers. Prevalence of these issues must be further examined through quantitative study to evaluate the need to reconsider current hospice eligibility criteria based on prognosis.

Objective To discover the impact of perinatal loss on obstetric nurses. Design In the parent study, obstetric nurses were provided with an open‐ended statement asking them to describe in writing the experience of being present during a traumatic childbirth. For this study, a secondary qualitative analysis was performed on those cases in which a perinatal loss was described as traumatic to answer new research questions. Participants A total of 464 cases were included in the parent study; 150 cases included either fetal or infant death. Of those, 91 cases had rich descriptions that we analyzed for this study. Methods The data were analyzed using Krippendorff's (2013) method for qualitative content analysis. Responses were clustered to allow themes to emerge. Nurses' experiences of fetal and infant loss were analyzed individually and then compared and contrasted for overarching themes. Results Six themes emerged from the fetal and infant loss experiences, with the final overarching themes from perinatal loss including getting through the shift, symptoms of pain and loss, frustrations with inadequate care, showing genuine care, recovering from traumatic experience, and never forgetting. Conclusion Perinatal loss can have a lasting effect on nurses, and thus continued support may be needed.