Qualitative Health Research最新文献

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A Participatory Evaluation of an Urban Garden Project in Ecuador: Exploring Factors That Impact the Recovery of People With Severe Mental Health Problems. 对厄瓜多尔城市花园项目的参与式评估:探索影响严重心理健康问题患者康复的因素。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-20 DOI: 10.1177/10497323241245867
Emilia C Zamora-Moncayo, Bernarda Herrera, June Larrieta, Aimée DuBois, Georgina Miguel Esponda
{"title":"A Participatory Evaluation of an Urban Garden Project in Ecuador: Exploring Factors That Impact the Recovery of People With Severe Mental Health Problems.","authors":"Emilia C Zamora-Moncayo, Bernarda Herrera, June Larrieta, Aimée DuBois, Georgina Miguel Esponda","doi":"10.1177/10497323241245867","DOIUrl":"10.1177/10497323241245867","url":null,"abstract":"<p><p>For the past years, Ecuador has been transitioning away from a hospital-based model of mental healthcare to one that is community-centred. However, challenges associated with hospital-based models endure, notably financial burden faced by those with severe mental health problems (SMHPs) due to labour market discrimination. Employment access for this group is often disregarded in policy planning, despite evidence of its benefits on mental health. Huertomanías, an urban garden initiative in Ecuador founded in 2015, works with individuals with SMHPs, providing work, income, and social inclusion. A case study using a participatory approach was carried out to explore factors that impact the recovery of people with SMHPs. Twelve participants engaged in diverse stages of the research, where several participatory activities were conducted including cognitive mapping, a photovoice project, and interviews. The analysis employed a thematic approach leading to four categories of impact within the urban garden: <i>autonomy (financial and personal)</i>, <i>interpersonal relations and relation with the environment</i>, <i>mental health</i>, and <i>family dynamics.</i> A final category of impact was established encompassing <i>external factors</i> (<i>family support</i> and <i>public policy and healthcare services</i>) that influence recovery. Findings suggest that the urban garden promotes autonomy and active participation within society, improves mental health, and transforms family dynamics. Further, this study highlights the importance of community-based mental healthcare (CBMHC), emphasising the need of public policies and healthcare in promoting autonomy through employment and community-centred services. Lastly, the study contributes insights into recovery experiences and CBMHC benefits, informing programme development and similar initiatives in Latin America.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141727983","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Eternal Present: A Photovoice Study of the Experience of Geriatrics Residents During the COVID-19 Pandemic. 永恒的现在:关于 COVID-19 大流行期间老年医学住院医师经历的摄影选择研究。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-18 DOI: 10.1177/10497323241245340
Juan Pablo Negrete-Najar, Adina Radosh Sverdlin, Alejandro Arreola Rodríguez, Ana Patricia Navarrete Reyes
{"title":"The Eternal Present: A Photovoice Study of the Experience of Geriatrics Residents During the COVID-19 Pandemic.","authors":"Juan Pablo Negrete-Najar, Adina Radosh Sverdlin, Alejandro Arreola Rodríguez, Ana Patricia Navarrete Reyes","doi":"10.1177/10497323241245340","DOIUrl":"https://doi.org/10.1177/10497323241245340","url":null,"abstract":"<p><p>During the COVID-19 pandemic, medical residents had the task of being the frontline of the response, being exposed to high risk of infection, increased clinical duty, and long and irregular working hours in highly restricted environments, increasing their levels of stress. We sought to expose the experiences of a group of geriatrics residents during this period of change in their professional and personal lives through the photovoice methodology. Thirteen participants were recruited and had 2 weeks to take photographs. The photographs were discussed in group meetings; the content of the conversations was transcribed and analyzed using interpretive description. Sixteen themes were identified. They were divided into personal life (11 themes) and life as a resident (5 themes). Adaptation was the main theme that came into discussion. The photographs and themes show how life changed for the participants, having a feeling of isolation, especially from their families, and highlighting their experiences as a team and community. While the pandemic, particularly at its beginning, was a period of uncertainty and a heavy load of work, it also provided learning and experience to this group of young physicians, which should not hide the fact that mental health concerns and burnout were a common situation. An online gallery was created which is publicly accessible.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141724762","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Being a Woman Is 100% Significant to My Experiences of Attention Deficit Hyperactivity Disorder and Autism: Exploring the Gendered Implications of an Adulthood Combined Autism and Attention Deficit Hyperactivity Disorder Diagnosis. 身为女性对我的注意力缺陷多动障碍和自闭症经历具有 100% 的重要意义:探索成年后合并自闭症和注意力缺陷多动障碍诊断的性别影响。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-18 DOI: 10.1177/10497323241253412
Emma Craddock
{"title":"Being a Woman Is 100% Significant to My Experiences of Attention Deficit Hyperactivity Disorder and Autism: Exploring the Gendered Implications of an Adulthood Combined Autism and Attention Deficit Hyperactivity Disorder Diagnosis.","authors":"Emma Craddock","doi":"10.1177/10497323241253412","DOIUrl":"10.1177/10497323241253412","url":null,"abstract":"<p><p>This article provides original insight into women's experiences of adulthood diagnoses of attention deficit hyperactivity disorder (ADHD) and autism. Research exploring experiences of adulthood diagnoses of these conditions is emerging. Yet, there is no research about the gendered experiences of an adulthood combined ADHD and autism (AuDHD) diagnosis. This article addresses this gap through interpretative phenomenological analysis of email interviews with six late-diagnosed AuDHD women revealing the complex interplay between late diagnosis, being a woman, and combined diagnoses of ADHD and autism. It underscores how gender norms and stereotypes contribute to the oversight and dismissal of women's neurodivergence. Interpretative phenomenological analysis reveals the inextricability of femininity and neurotypicality, the gendered burden, discomfort, and adverse consequences of masking, along with the adverse outcomes of insufficient masking. Being an undiagnosed AuDHD woman is a confusing and traumatising experience with profound and enduring repercussions. The impact of female hormones exacerbated participants' struggles with (peri)menopause often being a catalyst for seeking diagnosis after decades of trauma. The epistemic injustice of not knowing they were neurodivergent compounded this trauma. Diagnosis enabled participants to overcome epistemic injustice and moved them into a feminist standpoint from which they challenge gendered inequalities relating to neurodiversity. This article aims to increase understanding and representation of late-diagnosed AuDHD women's lived experiences. The findings advocate for trauma-informed pre- and post-diagnosis support which addresses the gendered dimension of women's experiences of being missed and dismissed as neurodivergent. There needs to be better clinical and public understanding of how AuDHD presents in women to prevent epistemic injustice.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141724761","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Understanding the Narratives of Child Sexual Abuse. 了解儿童性虐待的叙述。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-01 Epub Date: 2024-01-16 DOI: 10.1177/10497323231218828
Mari Dalen Herland
{"title":"Understanding the Narratives of Child Sexual Abuse.","authors":"Mari Dalen Herland","doi":"10.1177/10497323231218828","DOIUrl":"10.1177/10497323231218828","url":null,"abstract":"<p><p>This qualitative study consisted of in-depth, retrospective interviews with participants over the age of 18 who experienced child sexual abuse. Through narrative analysis, study findings shed light on three overall findings: the perception of memories, the perception of grooming, and the perception of the lived lives of child sexual abuse survivors. Findings suggest that the narratives elicited from the participants included current views but also past experiences and anticipation about the future, including individual and societal levels of meaning. These narratives are furthermore entangled and inexorably linked - temporally, culturally, generationally, materially, and emotionally - and the results are thus presented from a holistic perspective. Study findings help explain the complex dimensions concerning the lived experiences of child sexual abuse. As such, this research speaks to the field of social and health care practitioners working with children and families facing the complex phenomenon of child sexual abuse.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323421/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139479537","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Effects of Stigma: Older Persons and Medicinal Cannabis. 污名化的影响:老年人与药用大麻》。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-01 Epub Date: 2024-02-02 DOI: 10.1177/10497323241227419
Sherry Dahlke, Jeffrey I Butler, Kathleen F Hunter, Madeline Toubiana, Maya R Kalogirou, Shovana Shrestha, Rashmi Devkota, Joanna Law, Melissa Scheuerman
{"title":"The Effects of Stigma: Older Persons and Medicinal Cannabis.","authors":"Sherry Dahlke, Jeffrey I Butler, Kathleen F Hunter, Madeline Toubiana, Maya R Kalogirou, Shovana Shrestha, Rashmi Devkota, Joanna Law, Melissa Scheuerman","doi":"10.1177/10497323241227419","DOIUrl":"10.1177/10497323241227419","url":null,"abstract":"<p><p>Cannabis has long been stigmatized as an illicit drug. Since legalization in Canada for both medical and recreational purposes, older adults' cannabis consumption has increased more than any other age group. Yet, it is unclear how the normalization of cannabis has impacted perceptions of stigma for older adults consuming cannabis medicinally. Qualitative description was used to elucidate the experiences of older Canadians aged 60+ related to stigma and their consumption of cannabis for medicinal purposes. Data collection involved semi-structured interviews. Data analysis examined how participants managed stigma related to cannabis use. Perceived stigma was evident in many participants' descriptions of their perceptions of cannabis in the past and present, and influenced how they accessed and consumed cannabis and their comfort in discussing its use with their healthcare providers. Participants employed several distinct strategies for managing stigma-concealing, re-framing, re-focusing, and proselytizing. Findings suggest that while medical cannabis consumption is becoming increasingly normalized among older adults, stigma related to cannabis persists and continues to shape older adults' experiences. A culture shift needs to occur among healthcare providers so that they are educated about cannabis and willing to discuss the possibilities of medicinal cannabis consumption with older adults. Otherwise, older adults may seek advice from recreational or other non-medical sources. Healthcare providers require education about the use of medical cannabis, so they can better advise older adults regarding its consumption for medicinal purposes.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323436/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139673319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Alongside: Exploring the Meaningfulness of Significant Moments in Others' Lives Through Observation and Interview. 并肩作战:通过观察和访谈探索他人生活中重要时刻的意义。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-01 Epub Date: 2023-12-22 DOI: 10.1177/10497323231210495
Malene Beck, Bente Martinsen, Malene Missel, Charlotte Simony, Eileen Engelke, Michael van Manen
{"title":"Alongside: Exploring the Meaningfulness of Significant Moments in Others' Lives Through Observation and Interview.","authors":"Malene Beck, Bente Martinsen, Malene Missel, Charlotte Simony, Eileen Engelke, Michael van Manen","doi":"10.1177/10497323231210495","DOIUrl":"10.1177/10497323231210495","url":null,"abstract":"<p><p>How do we explore the meaningfulness of others' experiences? What means do we have to access their experiencing of the world? How do we express our understandings of others' experiences of body and place without reducing them to objectification? In this methodological paper, we reflect on how we can gain valuable insights into the lived experiences of others through research activities that are conducted 'alongside' participants. Phenomenological concepts of intentionality and embodiment are considered as we draw on an empirical example of exploring the experiences of hospitalized patients with neurological diseases through observations and interviews. The aim is to unfold alongside as an epistemological stance to explore the meaning of another's lifeworld. We strive to show that personal presence and engagement within this approach contains relational, existential, and aesthetic dimensions worth considering.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138832377","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Cosmetic Medical Tourists' Use of Online Support Communities: Sharing Information, Reciprocity, and Enduring Relationships. 美容医疗旅游者对在线支持社区的使用:共享信息、互惠互利和持久关系。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-01 Epub Date: 2024-01-16 DOI: 10.1177/10497323231219939
Rowena Forsyth, Tushar Prasad
{"title":"Cosmetic Medical Tourists' Use of Online Support Communities: Sharing Information, Reciprocity, and Enduring Relationships.","authors":"Rowena Forsyth, Tushar Prasad","doi":"10.1177/10497323231219939","DOIUrl":"10.1177/10497323231219939","url":null,"abstract":"<p><p>Cosmetic procedures are amongst the most popular procedures sought after by medical tourists. Cosmetic medical tourists utilise numerous sources of information when planning their trips including, where available, discussing their decision with previous medical tourists. Current research on online support communities has investigated the interactions of patients with various health conditions with online support; however, limited research exists on cosmetic medical tourists' participation in online support communities. Here we report findings from our qualitative interview study of Australian cosmetic medical tourists. We found that many of our participants experienced stigma regarding their intention to receive cosmetic procedures and to travel overseas from within their local social networks. Participating in online communities (Facebook groups) enabled them to access information and support from other cosmetic medical tourists. Through using public posting and messaging functionality of the communities, they performed two distinct roles in the groups that parallel the temporal transitions of their journeys: they were <i>information and support seekers</i> pre-surgery and <i>information and support providers</i> post-surgery. The reciprocity they practiced in the <i>provider</i> role occurred due to their desire to 'pay forward' the support they had received from others pre-surgery. This role was performed as a collective, community-based reciprocity rather than a direct mutual exchange. Some participants also transitioned their online relationships into enduing offline friendships demonstrating how online interactions may become enmeshed with broader social networks.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323406/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139479526","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
A Pianist's Technique Rehabilitation After Post-Traumatic Stress: An Autoethnographic Study. 创伤后应激反应后钢琴家的技巧康复:自述研究。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-01 Epub Date: 2024-01-22 DOI: 10.1177/10497323241226565
Carla Lewis, Liesl van der Merwe
{"title":"A Pianist's Technique Rehabilitation After Post-Traumatic Stress: An Autoethnographic Study.","authors":"Carla Lewis, Liesl van der Merwe","doi":"10.1177/10497323241226565","DOIUrl":"10.1177/10497323241226565","url":null,"abstract":"<p><p>Individuals suffering from post-traumatic stress disorder (PTSD) have access to a number of sources detailing the neuropsychological effects and influence of PTSD on their day-to-day lives. While the information on the effects and influence of PTSD may be helpful in understanding the scope of the disorder, there is a lack of knowledge on how to rehabilitate musicians, specifically pianists, who experience these effects. PTSD is especially detrimental to a pianist's abilities, and consequently, without concentrated rehabilitation strategies designed to combat the effects of PTSD, pianists suffering from PTSD may forfeit professional opportunities resulting in loss of livelihood and income. After the first author's experience with PTSD, she suffered from the same effects frequently described in the literature. Through personal journalling, informed music teaching, and self-reflection, she aimed to discover whether musical rehabilitation was possible.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323413/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139514081","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Learning to Communicate: A Photovoice Study With Intensive Care Residents During Night Shifts in the Intensive Care Unit. 学会沟通:在重症监护室夜班期间与重症监护住院医师进行的摄影选择研究。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-01 Epub Date: 2024-01-18 DOI: 10.1177/10497323231222388
Diana Quintero, Natalia Reinoso Chávez N, Juliana Vallejo
{"title":"Learning to Communicate: A Photovoice Study With Intensive Care Residents During Night Shifts in the Intensive Care Unit.","authors":"Diana Quintero, Natalia Reinoso Chávez N, Juliana Vallejo","doi":"10.1177/10497323231222388","DOIUrl":"10.1177/10497323231222388","url":null,"abstract":"<p><p>This study explored the learning experiences of intensive care residents in an intensive care unit (ICU) during night shifts and the development of communication skills in this community of practice. This action research qualitative study used the photovoice method in four workshops. A group of nine residents shared their learning experiences and collectively analyzed, built, and presented proposals to improve residents' communication skills in the community of practice in which they become intensivists. Participatory thematic analysis was conducted. Students concluded that night shifts in the ICU offered a perfect situational learning environment for communication with one-on-one resident-teacher relationships, less administrative work, and more resident responsibility, improving intensivist identity. Role models, reflective thinking, and teamwork are essential for fostering communication skills among intensivist community members and are all trainable. The results and student suggestions were presented to teachers and decision-makers in the clinic. These photovoice strategies developed students' abilities to share their critical views and suggestions with decision-makers for subsequent implementation, enhancing their confidence in their learning process, strengthening trust-based relationships with teachers, and improving future intensivists' practice communities.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492487","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Mothering a Child With Complexity and Rarity: A Narrative Inquiry Exploring Prader-Willi Syndrome. 复杂罕见儿童的母亲:探索普拉德-威利综合症的叙事调查。
IF 2.6 2区 医学
Qualitative Health Research Pub Date : 2024-07-01 Epub Date: 2024-01-28 DOI: 10.1177/10497323231225412
Genevieve Currie, Andrew Estefan, Vera Caine
{"title":"Mothering a Child With Complexity and Rarity: A Narrative Inquiry Exploring Prader-Willi Syndrome.","authors":"Genevieve Currie, Andrew Estefan, Vera Caine","doi":"10.1177/10497323231225412","DOIUrl":"10.1177/10497323231225412","url":null,"abstract":"<p><p>Daily experiences of mothers caring for children with Prader-Willi syndrome (PWS) are largely unknown and unvoiced. Knowledge of PWS has generally focused on pathology of the disorder. This emphasis overlooks the challenging moments of everyday life caring for children with PWS. Storied accounts of mothers caring for children with PWS offer expanded narratives to medicalized descriptions of experience. An understanding of everyday challenges in managing physical and mental health issues of PWS including hyperphagia and anxiety may create shifts in social and clinical perspectives. This understanding could improve practices in health and social care for families with PWS. This narrative inquiry studied everyday experience using storied accounts. Participants were mothers caring for children aged 3-17 years with genetically confirmed PWS who were experiencing hyperphagia. Four participants were recruited, and each interviewed 8-12 times over 12 months. Field texts and narrative accounts were co-composed through a collaborative process of analysis. Engaging with participants' day-to-day experiences offered insights into their work of nurturing, caring, and contributing to the care of a child with PWS. Narrative threads focused on complexity and rarity and include the desire to be normal, how ordinary becomes extraordinary, isolation, behaviors and normative standards, and alternative stories of mothering. Recommendations for practice and policy include (a) challenges of mothering a child with complexity, (b) moving beyond functionality and impairment to participation and quality of life, (c) re-storying narratives and supports for families, and (d) engaging with mothers to determine care priorities.</p>","PeriodicalId":48437,"journal":{"name":"Qualitative Health Research","volume":null,"pages":null},"PeriodicalIF":2.6,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11323427/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139571875","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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