Experiences Of Adults Research Articles

P104 Exploring patient activation and self-management experiences in adults with fibromyalgia: A qualitative evidence synthesis

Abstract Background/Aims Fibromyalgia Syndrome (FMS) is a chronic pain condition that impacts daily functioning, including self-care and household responsibilities. Effective self-management strategies are essential for managing FMS; however, success depends on an individual’s readiness and capacity to adopt health-promoting behaviours. This qualitative evidence synthesis explored the experiences of adults in their self-management, focusing on understanding the barriers and facilitators influencing patient activation (PA) and effective self-management in the context of FMS. Methods A qualitative evidence synthesis was undertaken. An electronic search was conducted across several databases, including AMED, PubMed, CINAHL, Science Direct, and PsycINFO. Eligibility criteria were applied to screen studies for relevance. Quality assessment was conducted using established tools, including the Critical Appraisal Skills Programme (CASP) questionnaire for qualitative studies and the Consolidated Criteria for Reporting Qualitative Research Checklist (COREC). Findings from the selected papers underwent a three-stage thematic synthesis process to identify common themes. Results Nine studies, comprising a total of 130 participants, were included in the synthesis. Four analytical themes were identified: legitimising FMS, the value of medical support, receiving peer and social support, and learning to self-manage. These themes highlight the multifaceted nature of self-management in FMS. The first theme of legitimising FMS shows how people living with FMS validate their condition, seeking acknowledgement and understanding from healthcare providers and their social support network. The second theme of the value of medical support was important in FMS management, with empathy, education, and personalised guidance from clinicians playing a crucial role in empowering patients to self-manage effectively. The third theme of receiving peer and social support shows that people with FMS found relief and empowerment through interactions with peers and social networks. This shared experience and communal support served as a catalyst for adopting health-promoting behaviours. Finally, the theme of learning to self-manage shows that active involvement in their health is a key component to living well with FMS. People living with FMS embark on a self-management journey, navigating various strategies and interventions to identify what works for them. Conclusion This qualitative synthesis shows that the self-management of FMS requires active involvement from people living with FMS. It illuminates the pivotal role of healthcare providers, peer support, and social networks in enabling individuals to navigate the challenges of FMS. The findings encourage a holistic approach to FMS care, emphasising the need for healthcare professionals to provide medical expertise, empathy, education, and personalised support. Disclosure K. Yung: None. D. Jadhav: None. C. Ma: None. S. Majgaonkar: None. E. Manai: None. J. Pearson: None.

Relationships among Cortisol, Perceived Stress, and Dental Caries Experience in Adolescents and Young Adults

Introduction: Stress can impact mental and physical health, especially during adolescence and young adulthood, but the extent of its contribution to dental caries is poorly understood. The present study assessed the association between perceived stress, cortisol levels (in hair and saliva), and overall caries experience of adolescents and young adults aged 15–25 years. Methods: Hair and saliva samples were obtained from 93 participants free of periodontal disease. Cortisol in hair and saliva was determined using a competitive enzyme-linked immunosorbent assay. Participants completed a perceived stress questionnaire and underwent full-mouth oral examination by a calibrated examiner. Dental caries experience was based on the decayed, missing, and filled teeth (DMFT) index. Sociodemographic variables were also recorded. Results: There were significantly higher hair cortisol levels and perceived stress scale (PSS) scores in individuals with dental caries experience (DMFT≥1) than in those without (DMFT = 0). However, there was no significant difference in salivary cortisol concentration. A binary logistic regression revealed that higher hair cortisol levels and greater scores on the perceived stress scale were associated with increased odds of having experienced dental caries. In contrast, no significant association was found between salivary cortisol concentration and dental caries. Using multivariable regression models, caries experience was found to be significantly associated with both hair cortisol levels and PSS scores. These associations remained statistically significant even after adjusting for sociodemographic variables. Conclusion: Hair cortisol levels and perceived stress have a significant association with dental caries experience, whereas salivary cortisol concentrations do not.

Emerging Ideas: Personal identity and mother–child relationship: Experiences of young adults raised by single mothers by choice

ABSTRACTObjectiveThis qualitative study examined the experiences of young adults raised by single mothers by choice and the way the circumstances of their upbringing have modeled their personal identity and mother–child relationships.BackgroundBeing conceived through anonymous sperm donation may create uncertainty among children and young adults. However, there is little research on the implications of this situation from the perspective of young adults.MethodIn‐depth narrative interviews were conducted with 21 young Israeli adults born to single mothers by choice as a result of anonymous sperm donation.ResultsThe findings revealed several themes regarding the relationship with the mother, including her image as influential, exclusive, and deeply invested in the relationship. The interviews highlighted anxiety of abandonment and dependency on the mother, who was presented as both powerful and vulnerable or dependent on her child. Participants expressed mix of appreciation and anger toward their mothers' decision. They often conveyed that their mothers had openly and transparently discussed the circumstances surrounding their birth.ConclusionThe experience of children of single mothers by choice conceived by sperm donation is complex, including mixed feelings regarding their relationship with their mother and the effects of the father's absence on their life and identity.ImplicationsThe findings underscore the importance of considering anonymity in sperm donation within policy and bioethical research. Additionally, they carry implications for interventions aimed at supporting single‐mother‐by‐choice families.

“You can be cured, but cancer never leaves you behind”: an interdisciplinary approach into the embodied cancer experiences among adult Colombian childhood/adolescent cancer survivors

Purpose Childhood or adolescent cancer survivors (CACS) are an understudied population in Colombia and, in general, in Central and South America. Worldwide, studies typically focus on high-income settings while approaching CACS’ experiences from a biomedical or psychological perspective. However, both perspectives miss an important aspect of survivorship after childhood or adolescent cancer: the affected individual’s subjective experiences of having a disabled body. This qualitative study aimed to explore the embodied experiences of Colombian adults who survived cancer during their childhood or adolescence to better understand how CACS relate to their altered body and world. Methods By integrating phenomenological insights and conducting comprehensive life-story interviews, we explored the various ways in which survivors’ cancer experiences affect their bodily sense of self—from the acute phase of the disease until well into adulthood. A total of ten life-stories interviews and one focus group were carried out with seven CACS. All participants were survivors of a different type of childhood/adolescent cancer. The results were analyzed thematically, focusing on the embodied aspects of participants’ experiences. Results We developed three main themes regarding the embodied cancer experience among participating CACS: Firstly, participants’ body changes because of the cancer and its treatment, which makes them aware of their body. Secondly, they adapt to this experience in different bodily ways. Finally, they carry bodily traces of their cancer experience in the present as well as into the future. Conclusions The CACS participating in this study report that their experience with cancer has been embodied throughout their lives, changing their sense of their body and how they relate to it, and leaving traces into the present and their imagined future.

The potential impact of exercise upon symptom burden in adolescents and young adults undergoing cancer treatment

PurposeAdolescents and young adults (AYAs) experience vast symptom burden resulting from cancer treatment-related toxicities (TRTs). Evidence supports integrated exercise to mitigate several TRTs in other cohorts; however, evidence in AYAs is lacking. Conventional reporting of TRTs adopts a maximum grade approach failing to recognise the trajectory over time, of persistent, or lower grade toxicities. Alternatively, longitudinal analysis of toxicities over time (ToxT) may provide clinically meaningful summaries of this data. We evaluated the longitudinal impact of an exercise intervention on TRTs in AYAs undergoing cancer treatment.MethodsA prospective, randomised trial allocated participants to a 10-week exercise intervention (EG) or control group (CG) undergoing usual care. Detailed information on TRTs was collected throughout the intervention. All TRTs were graded per the Common Terminology Criteria for Adverse Events (CTCAE v5.0).ResultsForty-three (43) participants (63% male, mean age 21.1 years) were enrolled. When categorised to reflect the maximal worst grade experienced (Grade 0, Grade 1–2 and ≥ Grade 3), the CG reported an increased incidence of severe fatigue (≥ Grade 3) compared with the EG (p = 0.05). No other differences between groups were evident (p > 0.05). ToxT analysis of the four most common toxicities (fatigue, pain, nausea and mood disturbances) demonstrated no difference in the mean grade of each over time (p > 0.05).ConclusionA 10-week exercise intervention reduces the severity of fatigue in AYAs undergoing treatment. While the ToxT approach provided insight into the toxicity profile, adequately powered studies are needed to better understand these differences within a homogenous sample.Trial registration(ACTRN12620000663954) 10th June 2020.

Participation experiences of young people with cerebral palsy in key life situations: A qualitative study.

To explore the participation experiences of adolescents and young adults with cerebral palsy (CP) in key life situations of young adulthood and investigate the impact of a government-funded, disability insurance scheme on participation and health service access. We conducted a qualitative descriptive study using semi-structured interviews. Sixteen young people with CP (aged 16-30 years; mean age = 24 years 4 months) participated. Interviews were audio-recorded and transcribed verbatim before thematic analysis. An overarching theme of 'branching out into adulthood' was identified. Participants described early adulthood as a time of change, choice, and challenge. The sub-themes were: (1) making sense of my CP as an adult; (2) people's attitudes towards disability and the impacts on me; (3) roadblocks and workarounds; and (4) participation at the time of the COVID-19 pandemic. Participants reported complex views on the new disability insurance scheme. While access to services and support increased, participants experienced significant difficulty negotiating appropriate funding, resulting in frustration and reduced confidence in the scheme. Young people with CP experience complexity as they participate during young adulthood. Alongside exploring how their identity is intertwined with having CP, they face significant barriers to participation when navigating relationships, accessing services, and being involved in the community.

What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults

What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults

The COVID-19 Crisis, Religiosity and Spirituality Among Seventh-Day Adventist Older Adults

ABSTRACT This study highlights the lived experience of Seventh-day Adventist older adults during the COVID-19 pandemic, while focusing on their religious and spiritual practices during this event. The researchers conducted 10 in-depth qualitative interviews and found participants experienced notable changes in their personal spirituality and practices. Furthermore, findings showed participants categorizing the events of the pandemic in light of their understanding of the Bible. The analysis highlights the all-encompassing influence of spirituality and religiosity upon participants’ experience of the world. The findings assist social workers to consider the importance of assessing and integrating older adults’ spirituality as means to enhance their well-being.

Inequalities in Healthcare Access, Experience and Outcomes in Adults With Inflammatory Bowel Disease: A Scoping Review.

Inflammatory bowel diseases (IBDs) are incurable diseases that require lifelong access to health services. Accumulating evidence of inequalities in health care access, experience, and outcomes for individuals with IBD is apparent. This review aimed to describe the inequalities in healthcare access, experiences, and outcomes of care for adults with IBD, to identify research gaps, and to identify future research priorities in this area. A scoping review was conducted to retrieve quantitative, qualitative, and mixed methods evidence from 3 databases (EMBASE, Medline, and CINAHL) published between January 1, 2000, and September 27, 2023. Fifty-one studies met the criteria for inclusion. The majority (42 of 51) focused on IBD health outcomes, followed by healthcare access (24 of 51). Significantly fewer investigated patient experiences of IBD healthcare (8 of 51). Most available studies reported on race/ethnic disparities of healthcare (33 of 51), followed by inequalities driven by socioeconomic differences (12 of 51), rurality (7 of 51), gender and sex (3 of 51), age (2 of 51), culture (2 of 51), literacy (1 of 51), and sexuality (1 of 51). Inflammatory bowel disease patients from Black, Asian, and Hispanic ethnic groups had significantly poorer health outcomes. A lack of research was found in the sexual and gender minority community (1 of 51). No research was found to investigate inequalities in IBD patients with learning disabilities or autism. Further research, particularly utilizing qualitative methods, is needed to understand health experiences of underserved patient populations with IBD. Cultural humility in IBD care is required to better serve individuals with IBD of Black and Asian race/ethnicity. The lack of research amongst sexual and gender minority groups with IBD, and with learning disabilities, poses a risk of creating inequalities within inequalities.

Development and validation of a new measure of school-age bullying experiences for adults: the Bullying and Exclusion Experiences Scale (BEES)

Few options are available for measuring the adult impact of childhood bullying. The Bullying Experiences and Exclusion Scale (BEES) is an 18-item retrospective self-report measure of school-age bullying experiences in three different roles (victim, witness, perpetrator). Its validity was examined in an online survey with 346 participants. Construct validity was examined using a polytomous Rasch model with accompanying principal components analysis and found to be supported. Convergent and discriminant validity were supported based on comparison measures focussing on past school experiences (social support, emotional problems, conduct problems, peer problems, prosocial behaviour), as well as current adult experience of stress, anxiety and depression. Concurrent validity was also supported based on associations with a global self-rating of experience in each bullying role. It was concluded that the BEES meets the need for an easily administered retrospective measure of school age bullying experiences which has relevance to ongoing psychological disturbance and past interpersonal factors.

Experiences of adults living with an implantable cardioverter defibrillator for cardiovascular disease.

Experiences of adults living with an implantable cardioverter defibrillator for cardiovascular disease.

Adult Feeding Experience Determines the Fecundity and Preference of the Henosepilachna vigintioctopunctata (F.) (Coleoptera: Coccinellidae).

Both larvae and adults of the Henosepilachna vigintioctopunctata feed on leaves of potatoes, tomatoes, and eggplants. Given the variation in planting times of host plants in the Jianghan Plain, host switching between larvae and adults of H. vigintioctopunctata is inevitable to ensure continuous food availability. We evaluated the effect of consistent versus diverse larval and adult host plant feeding experience on growth performance, fecundity, longevity, and feeding preferences of H. vigintioctopunctata through match-mismatch experiments. Host plant quality significantly influences larval development and adult reproduction. Potatoes are identified as the optimal host plant for H. vigintioctopunctata, whereas eggplants significantly negatively affect the adult fecundity. Adult stage host feeding experience determines the fecundity of H. vigintioctopunctata, irrespective of the larval feeding experience. The fecundity of H. vigintioctopunctata adults on eggplant leaves remains significantly lower than that observed on potato leaves. Similarly, adult H. vigintioctopunctata demonstrate a preference for consuming potato leaves, irrespective of the larval feeding experience. Although host switching between larval and adult stages offers lesser benefits for the performance of herbivorous insects compared to a consistent diet with potato leaves, it maintains H. vigintioctopunctata population continuity amidst shortages of high-quality potato hosts.

"There's So Much That They're Enduring": Experiences of Older Adults Undergoing Major Elective Surgery.

This qualitative study aimed to explore the psychosocial experience of older adults undergoing major elective surgery from the perspective of both the patient and family caregiver. Older adults face unique psychological and social vulnerabilities that can increase susceptibility to poor health outcomes. How these vulnerabilities influence surgical treatment and recovery is understudied in the geriatric surgical population. Adults aged 65 and older undergoing a high-risk major elective surgery at the University of California, San Francisco and their caregivers were recruited. Semi-structured interviews were conducted at three time points: 1-2 weeks before surgery, and at 1- and 3-months following surgery. An inductive qualitative approach was used to identify underlying themes. Twenty-five older adult patients (age range 65-82 years, 60% male) and 11 caregivers (age range 53-78 years, 82% female) participated. Three themes were identified. First, older surgical patients experienced significant challenges to emotional well-being both before and after surgery, which had a negative impact on recovery. Second, older adults relied on a combination of personal and social resources to navigate these challenges. Lastly, both patients and caregivers desired more resources from the healthcare system to address "the emotional piece" of surgical treatment and recovery. Older adults and their caregivers described multiple overlapping challenges to emotional well-being that spanned the course of the perioperative period. Our findings highlight a critical component of perioperative care with significant implications for the recovery of older surgical patients.

A pilot study: Exploring suicidal ideation among non-offending adults with sexual attraction to minors, through their online forum posts

Summary An emerging field of research seeks to understand the experiences of non-offending adults who experience sexual attraction towards children. Research indicates that this largely hidden population can experience significant mental ill health and suicidal ideation, yet are reluctant to seek professional mental health support. Furthermore, mental ill health has been identified as a factor that can increase the likelihood of offending. This study, undertaken by a social work practitioner researcher, aimed to assist in understanding suicidality factors within this population, and to identify how statutory mental health services could be developed for this client group, thus contributing to child protection and suicide prevention agendas. A qualitative analysis was undertaken of data gathered from an online forum used by adults who have sexual attraction towards children, and are committed to non-offending. The data related to forum members’ experiences of suicidality, and key themes were identified through thematic analysis. Findings The study found that a pattern of suicidal ideation commonly appears to manifest and identified risk and protective factors that can influence suicidality. The benefits of peer support and the strengths and limitations of professional support were also identified. Applications The findings from this study contribute to an improved understanding of this client group for mental health practitioners. The findings also lay the foundation for further investigations, to inform the development of mental health services to facilitate improved outcomes for this client group, and for child protection.

Experiences of receiving an mHealth application with proactive nursing support among community-dwelling older adults: a mixed-methods study.

As the population ages, a plethora of digital and mobile health applications for assistance with independent living have emerged. Still unknown, however, is how older adults sustain the use of these applications. This study sought to explore the experiences of older adults following their participation in a programme that combined the use of an mHealth application with proactive telecare nursing support. We employed a concurrent mixed-methods design for this study. The quantitative strand included a survey, whereas the qualitative strand included open-ended questions as part of the survey to understand the participants' experiences. Participants for this study were community-dwelling older adults who had taken part in an interventional study that sought to examine the effects of mHealth and nurse support. A convenience sampling approach was employed to recruit potential participants for this study. Fifty-five older adults participated. The majority expressed positive attitudes and satisfaction with the app and the nurses' support. The app and nurses' support helped participants to understand their health status and obtain health information. Reasons to halt app usage included technical issues and limited social support. Mobile apps with professional follow-up support could potentially support older adults in the community, although emerging concerns need to be addressed to sustain long-term usage of these apps.

Narratives of Japanese nuclear immigrants in New Zealand: (in)(di)vesting in L2 and identity

ABSTRACT This article reports on a study that investigated the language learning and identity negotiation experiences of Japanese adults, nuclear immigrants, who left Japan and arrived in New Zealand after the 2011 Fukushima nuclear accident. Drawing on theories of investment, capital and communities of practice, the study explores how the nuclear immigrants negotiate their identities as L2 English learners and users within their New Zealand communities, both the L2 community and the L1 Japanese immigrant community infused with its own cultural and political ideologies. The study also asks why and how they invest or divest in English language learning and using practices. Data was collected via biographical narrative interviews from eight participants. Thematic narrative analysis identified themes which were interpreted in relation to dimensions of social activity represented by micro, meso, and macro levels. The findings indicate that the valuing and acceptance of the participants’ pre-existing capital serve as affordances to affirm and expand their identity, while rejection of their competence by sociocultural norms resulted in their withdrawal from the L2 communities, which eventually caused divestment in L2.

Understanding Senior Adults' Needs, Preferences, and Experiences of Commercial Exergames for Health: Usability Study.

Many senior adults are at risk of mental and physical disorders due to a lack of sufficient exercise. Therefore, adherent exercise should be urgently promoted to improve senior adults' muscle strength, preventing falls and conditions caused by physical and cognitive decline. However, off-the-shelf exercise games, so-called exergames, are mainly targeted at the younger generation or children, while senior adults are neglected, when this age group strongly needs exercise. Exergames could serve as a health intervention for promoting exercise. This study aimed to investigate senior adults' experience, perceptions, and acceptance of game technology to promote exercise in order to suggest game design guidelines. In this usability study, participants engaged in playing Nintendo Switch and Xbox Kinect games, after which semistructured interviews were conducted. Before the gameplay, the participants provided their background information, exercise habits, and use of technology products. Next, all participants completed a workshop including 3 activities (brief instructions on how to play the games: 20 minutes; playing the selected exergames: 80 minutes; semistructured interviews: 20 minutes) for 2 hours a day for 3 days each. The participants played the latest Nintendo Switch games (eg, Just Dance, Boxing, Ring Fit Adventure) and Xbox Kinect games (eg, Kinect Adventures!, Mini Games). Just Dance, Zumba, and Boxing were played in activity 1; Ring Fit Adventure and Mini Games in activity 2; and Kinect Adventures! in activity 3. Reflexive thematic analysis was applied to identify the relative themes generated from the interviews. In total, 22 participants (mean age 70.4, SD 6.1 years) were enrolled in the workshop in May 2021. The results of the generated themes included incomprehension of game instructions, psychological perception of game technology, and game art preferences. The subthemes generated from game art preferences included favorite game genres, characters, and scenes. There is a significant need for customized game tutorials considering senior adults' cognitive and physical aging. Furthermore, the adventure game genre is preferable to other games. Humanlike game characters are preferable, especially those with a fit and healthy body shape. Nature scenes are more enjoyable than indoor stages or rooms. Furthermore, the game intensity design and playing time should be carefully planned to meet the World Health Organization's criteria for physical activity in older adults. Intelligent recommendation systems might be helpful to support older adults with various health conditions. The guidelines suggested in this study might be beneficial for game design, exercise training, and game technology adoption of exergames for older adults to improve health.

Participation in everyday activities among young adult relatives of parents with dementia - A qualitative study.

Previous research has shown that young adult relatives of parents with dementia experience strain through increased responsibility and changed relationships in the family with potential consequences for their emotional, mental and physical well-being. Less is known about how young adult relatives experience their participation in everyday activities typically associated with young adulthood and how their participation is affected by the parent´s dementia. This study explores young adult relatives' experiences of participation in everyday activities and how their participation was affected by having a parent with dementia. The study followed a qualitative, descriptive approach. Semi-structured individual interviews with 11 young adult relatives (aged 21 - 31) of parents with dementia were conducted. The interviews were analysed using Kirsti Malterud's iterative cross case analysis method 'Systematic text condensation'. The analysis identified three categories: Dilemmas of choosing, Not having a choice and Reversal of roles. The young adult relatives experienced dilemmas and constraints regarding participation in everyday activities usually related to young adulthood. They navigated situations where they were to choose between the parent with dementia and their own everyday activities and they often downgraded or cancelled participation in own activities related to leisure time, school, job and career. Moreover, their participation seemed affected by chores and responsibilities resulting in a lack of energy leading them to forego social activities in particular or change their choice of activities. The young adult relatives need help and support in their everyday lives. Health care professionals are encouraged to focus on relieving them from some of the responsibilities and practical tasks enabling them to live their own lives as young adults, while being part of the family and contributing towards the responsibilities and tasks with which they can cope.

'There is still a part of me that would love to be the old me again', how do adolescents and young adults (AYA) experience cancer-related bodily changes: a phenomenological interview study.

Due to the increase in both cancer incidence and overall survival rates, more adolescents and young adults (AYAs) have to live with the effects that their cancer diagnosis and following treatments have on their bodies. This qualitative phenomenological study aimed to gain more insight into the way AYAs experience these effects and how they respond to these effects. Semi-structured interviews with a sample of 11 AYAs with an age range of 25-41years at the time of the interview, who were diagnosed with different types of cancer, were conducted. Participants were recruited via social media and patient associations until data saturation was reached. A topic guide with open-ended questions about lived experiences was used. Interpretative phenomenological analysis (IPA) was performed to analyse the transcripts. We identified six Group Experiential Themes based on different ways AYAs experience their bodies: (1) self-conscious body, (2) vulnerable body, (3) adapting to the body, (4) uncontrollable body, (5) remembering the body and (6) shared bodies. This study offers in-depth insight into the bodily experiences of AYAs after cancer and how they respond to these changes from a phenomenological point of view. This knowledge could be beneficial to provide more guidance for AYAs during and after their illness, by focussing on personalised psychological (after)care.

Older adult’s experiences of navigating healthcare whilst living with multimorbidity

Objective The way older adults navigate their healthcare is critical to supporting positive health outcomes. However, navigating healthcare with multimorbidity is typically disjointed due to complexities in treatment, management, and service provision. This study sought to examine how older patients navigate healthcare whilst living with multimorbidity. Methods and Measures Semi-structured interviews were undertaken with five older adults, aged 65 or older, living with multimorbidity in residential care in England. An Interpretive Phenomenological Analysis was undertaken. Results Overall, participants experienced navigating healthcare whilst living with multimorbidity as challenging. Group Experiential Themes included ‘Health knowledge and understanding’, ‘Relationships and expectations’ and ‘Navigating health care with a single lens’. Collectively these themes represented narratives involving how having limited understanding of health conditions, experiencing challenges in communication with health professionals, and receiving segmented care in a health care system driven by a single condition focus interfered with navigation. Conclusion These findings highlight experiences of older adults living with multimorbidity navigating healthcare and illustrate several ways older adults living with multimorbidity may be supported to navigate services with less challenges. The research also promotes the need for future research in this area.