Journal of Child and Family Studies最新文献_第9页

The Role of Mothers’ and Fathers’ Perfectionistic Concerns and Emotional Dysregulation in the Co-Occurrence between Work-Family Conflict and Parental Burnout 母亲和父亲的完美主义关注和情绪失调在工作与家庭冲突和父母职业倦怠之间的共存中的作用

IF 2.1 3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-14 DOI: 10.1007/s10826-024-02801-6

Katrijn Brenning, Barbara De Clercq, Bart Soenens

{"title":"The Role of Mothers’ and Fathers’ Perfectionistic Concerns and Emotional Dysregulation in the Co-Occurrence between Work-Family Conflict and Parental Burnout","authors":"Katrijn Brenning, Barbara De Clercq, Bart Soenens","doi":"10.1007/s10826-024-02801-6","DOIUrl":"https://doi.org/10.1007/s10826-024-02801-6","url":null,"abstract":"Work-family conflict and parental burnout are two important and often co-occurring indicators of psychological maladjustment related to the parenting role. Whereas both have been studied in largely different research areas, the present study forwards the assumption that their co-occurrence may be explained by shared dispositional factors such as parental perfectionism and emotional dysregulation (Malivoire et al., 2019). In particular, the present study adds to existing literature by (a) exploring the role of perfectionistic concerns in (the co-occurrence of) work-family conflict and parental burnout, (b) examining the role of emotional dysregulation as an intermediate variable in this link between perfectionism and parental maladjustment, and (c) addressing these research objectives for mothers (N = 116) and fathers (N = 102) separately, as well as their mutual influences using Actor-Partner Interdependence Modeling (APIM). The research goals are examined in families of adolescents, thereby addressing parental experiences during one of the most challenging periods of parenthood. The results based on both maternal and paternal self-report showed that perfectionistic concerns were related to both work-family conflict and parental burnout, with emotional dysregulation playing a significant intermediate role. In addition to these actor effects, the APIM results showed a significant partner-effect between paternal perfectionistic concerns and maternal work-family conflict, as well as between maternal perfectionistic concerns and paternal burnout. From an applied perspective, these findings suggest that interventions towards parents who struggle with work-family balance should not only focus on a more realistic and compassionate attitude towards themselves, but should also target emotion regulation, and enhance insight in transactional processes between partners.","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"89 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139754806","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Mothers’ Perceptions and Experiences on Corporal Punishment within the Family Systems Approach Framework 在家庭系统方法框架内母亲对体罚的看法和经历

IF 2.1 3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-14 DOI: 10.1007/s10826-023-02728-4

Şerife Hülya Kurt, Mustafa Yaşar

{"title":"Mothers’ Perceptions and Experiences on Corporal Punishment within the Family Systems Approach Framework","authors":"Şerife Hülya Kurt, Mustafa Yaşar","doi":"10.1007/s10826-023-02728-4","DOIUrl":"https://doi.org/10.1007/s10826-023-02728-4","url":null,"abstract":"The aim of this study was to examine mothers’ perceptions and experiences of corporal punishment during interactions with their children according to the Family Systems Approach. Interviews were conducted with 19 mothers of 5–6 years old children living in a small town, Anamur, on the Mediterranean coast, in the province of Mersin, Turkey. Collected data were analyzed through qualitative content analysis, and analysis revealed participating mothers exposed their children to corporal punishment and considered some situations acceptable. Typically, mothers used physical force to prevent or manage children’s unwanted behavior, express their anger, and/or re-establish their authority. Participating mothers perceived corporal punishment as unacceptable when it involved children’s physical needs and/or safety. According to the Family Systems Approach, these mothers failed to meet their children’s needs of individualization due to their role organizing the family’s daily routine. Mothers’ overly-excessive proximity to their children, both emotionally and physically, increased the tendency to be intrusive in the children’s lives. Thus, problems of hierarchy and extremely permeable boundaries between family members seemed to form the basis of corporal punishment.","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"12 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139754803","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

The Association Between Marital Satisfaction and Parental Burnout: A Moderated Mediation Model of Parents’ and Grandparents’ Coparenting 婚姻满意度与父母职业倦怠之间的关系：父母和祖父母共同养育子女的调节中介模型

IF 2.1 3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-14 DOI: 10.1007/s10826-024-02804-3

Bingjie Lu, Jian Sun, Feng Sun, Jifen Yang, Bin-Bin Chen

{"title":"The Association Between Marital Satisfaction and Parental Burnout: A Moderated Mediation Model of Parents’ and Grandparents’ Coparenting","authors":"Bingjie Lu, Jian Sun, Feng Sun, Jifen Yang, Bin-Bin Chen","doi":"10.1007/s10826-024-02804-3","DOIUrl":"https://doi.org/10.1007/s10826-024-02804-3","url":null,"abstract":"Parental burnout is a condition resulting from chronic stress related to one’s parental role. Based on current research advances, family functioning forms a crucial part of the antecedents that influence parental burnout. However, there is a paucity of literature on the mechanisms by which family functioning affects parental burnout and how the factors in family functioning interact and influence each other. The present study aimed to explore the potential indirect association between marital satisfaction and parental burnout through the mediating role of parents’ coparenting support. Furthermore, the study examined whether grandparents’ coparenting played a moderating role in the relationship between parents’ coparenting support and parental burnout. A total of 673 parents of preschool children completed questionnaires assessing marital satisfaction, parental burnout, and the quality of both parents’ and grandparents’ coparenting relationships. The results revealed that marital satisfaction was indirectly associated with parental burnout through parents’ coparenting support. Additionally, parents’ coparenting support interacted with grandparents’ coparenting conflicts in influencing parental burnout. This study highlights the significance of high satisfaction marriage relationships in alleviating parental burnout through parents’ coparenting support. Moreover, it underscores the importance of both parents’ and grandparents’ coparenting relationships in parental adjustment. These findings emphasize the role of coparenting in understanding parental burnout and suggest the potential application of family systems theory and risks and resources theory to explain and predict the effects of family functioning on parental burnout.","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"99 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139754961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Etch the Emotional Life: Mother-Child Emotion Socialization from Age 3 to 6 Years 刻画情感生活：3 到 6 岁期间的母子情感社会化

IF 2.1 3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-13 DOI: 10.1007/s10826-024-02799-x

Danhua Zhu, Jenna B. Terry, Karen E. Talley, Martha Ann Bell, Julie C. Dunsmore

{"title":"Etch the Emotional Life: Mother-Child Emotion Socialization from Age 3 to 6 Years","authors":"Danhua Zhu, Jenna B. Terry, Karen E. Talley, Martha Ann Bell, Julie C. Dunsmore","doi":"10.1007/s10826-024-02799-x","DOIUrl":"https://doi.org/10.1007/s10826-024-02799-x","url":null,"abstract":"Emotion socialization is conceptualized as a relational process, yet children’s role in socializing parents’ emotions is rarely considered. This study explored longitudinal patterns of mother-child emotion socialization from early to middle childhood. Participants were 349 children (51% boys, 49% girls) and their mothers from the southeastern United States. Children were 79.4% White, 12% Black or African American, and 8.3% multi-racial or other; 6.3% were Hispanic/Latino. Mother-child dyads completed an etch-a-sketch task when children were 3, 4, and 6 years old. At each time, mothers’ and children’s expression, coaching, and dismissing of positive and negative emotions were observed. Hierarchical Linear Modeling analyses identified developmental trajectories and within-dyad associations of emotion coaching and dismissing with emotion expression. Over time, expression of positive emotions decreased and expression of negative emotions showed no change for both mothers and children. Mothers decreased in coaching children’s positive emotions and showed no change in coaching children’s negative emotions. Children increased in coaching mothers’ positive emotions and showed no change in coaching mothers’ negative emotions over time. Both mothers and children decreased in dismissing emotions over time. Within dyads, mothers’ increases in coaching and in dismissing related to children’s increased expression. Children’s increases in coaching related to mothers’ increased expression. Findings highlight complexity and dynamics of emotion socialization processes over time.","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"18 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139754805","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Adolescent Grandchildren as Caregivers of their Custodial Grandmothers: Implications for Grandchild Well-Being 作为监护祖母照顾者的青少年孙辈：对孙辈福祉的影响

IF 2.1 3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-03 DOI: 10.1007/s10826-024-02788-0

Khushbu Patel, Megan L. Dolbin-MacNab, Jyoti Savla

{"title":"Adolescent Grandchildren as Caregivers of their Custodial Grandmothers: Implications for Grandchild Well-Being","authors":"Khushbu Patel, Megan L. Dolbin-MacNab, Jyoti Savla","doi":"10.1007/s10826-024-02788-0","DOIUrl":"https://doi.org/10.1007/s10826-024-02788-0","url":null,"abstract":"In custodial grandfamilies, grandchildren often provide critical support and assistance to their grandparents. Less is known about the extent to which grandchildren may serve as caregivers to their custodial grandparents and how providing care may impact their well-being. Informed by the stress process model, the purpose of this study was to examine the nature of adolescent grandchildren’s caregiving to their custodial grandmothers and the relationship of providing this care to grandchildren’s perceived caregiving interference and internalizing and externalizing behavior problems. A survey was administered to 81 adolescents, aged 12 to 18, and their custodial grandmothers. Results suggest that grandchildren provide assistance with both instrumental activities of daily living (IADLs; e.g., housework, cooking) and activities of daily living (ADLs; walking, dressing). Results of a path analysis revealed that grandchildren’s assistance with ADLs was associated with greater perceptions of caregiving interference in social and academic arenas, which was associated with increased externalizing behavior problems. Implications for practice, which underscore the necessity of interventions to support grandchild caregivers, and directions for future research, are addressed.","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"73 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-02-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139678915","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Attachment-based Prevention Program Involving Mothers and Fathers: Seven-year Post-Intervention Outcomes of a Randomized Control Trial 母亲和父亲共同参与的依恋预防计划：随机对照试验的七年干预后结果

IF 2.1 3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-02 DOI: 10.1007/s10826-023-02762-2

Isabelle Walter, Julia Quehenberger, Swinde Landers, Karl Heinz Brisch

{"title":"Attachment-based Prevention Program Involving Mothers and Fathers: Seven-year Post-Intervention Outcomes of a Randomized Control Trial","authors":"Isabelle Walter, Julia Quehenberger, Swinde Landers, Karl Heinz Brisch","doi":"10.1007/s10826-023-02762-2","DOIUrl":"https://doi.org/10.1007/s10826-023-02762-2","url":null,"abstract":"The effects of a holistic attachment-based primary prevention program (SAFE), which is aimed at fathers and mothers during the transition to parenthood, were assessed over the 7-year post-intervention follow-up of a randomized control trial. A non-clinical German sample was included in the trial (fathers: n = 58, mothers: n = 71; children: n = 72). The children’s mean age was 7.30 years (SD = 0.41) and their attachment representations were assessed using a doll play procedure. Among the group of insecure mothers (n = 58), significantly more children (50%) in the SAFE group displayed a secure attachment representation compared to the control group (25%). No children of mothers with unresolved trauma displayed a disorganized attachment representation. In the parent domain, the increase in couple discord over time perceived by the SAFE mothers was significantly lower than that for the mothers in the control group. Furthermore, mothers in the SAFE group reported significantly higher partnership quality than the control mothers. The perceived benefits of the programs were significantly higher, in multiple domains, among SAFE fathers and mothers compared to control parents. The effect sizes were medium to large. Even after 7 years, program participation continues to have a positive impact on the children, and their fathers and mothers. The most important implication of this study for clinical practice is the need to support mothers with insecure or unresolved trauma in order to promote healthy child development. In addition, we think that it is important to support both parents during the transition to parenthood. TRN: DRKS00017050 (retrospectively registered, March, 28th 2019)","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"9 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139680201","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

WhatsApp with the Evidence Base for Behavioral Parent Training Apps? A Systematic Review of Mobile Phone Applications 父母行为训练应用程序的证据基础是什么？对手机应用程序的系统回顾

IF 2.1 3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-02 DOI: 10.1007/s10826-024-02789-z

Melyssa M. Mandelbaum, Allison M. A. Rumelt, Shira N. Wein, Hilary B. Vidair

{"title":"WhatsApp with the Evidence Base for Behavioral Parent Training Apps? A Systematic Review of Mobile Phone Applications","authors":"Melyssa M. Mandelbaum, Allison M. A. Rumelt, Shira N. Wein, Hilary B. Vidair","doi":"10.1007/s10826-024-02789-z","DOIUrl":"https://doi.org/10.1007/s10826-024-02789-z","url":null,"abstract":"Behavioral parent training (BPT) is a highly efficacious evidence-based treatment for children with externalizing behavior problems, yet parents often do not attend this treatment or discontinue prematurely. The recent proliferation of parenting apps is a promising alternative for helping parents address child behavior difficulties; however, there is scant research examining evidence-based support for these apps. The purpose of the current study was to examine if, and to what extent, parenting apps include core BPT techniques. Each of the six BPT techniques was broken down into components considered essential for teaching each strategy effectively. Seventy-three parenting apps met criteria for inclusion based on keyword searches for child behavior difficulties and parenting in app stores. Findings revealed little evidence-based support for parenting apps. Specifically, the mean number of BPT techniques was limited, with approximately 75% of apps including two or fewer of the six BPT techniques and none including all six techniques. Reinforcement was included most often (84% of apps), followed by punishment (64%). Direct commands had the highest mean percentage of components across BPT techniques yet was included in the fewest number of apps (4%). The results highlight the need for increased evidence-based BPT content for parenting apps. Recommendations include an app classification system and thorough examination of parenting apps before suggesting them to clients.","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"302 2 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139678620","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Severe pneumonia in patients with systemic lupus erythematosus admitted to the intensive care unit. 入住重症监护室的系统性红斑狼疮患者的重症肺炎。

3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-01 Epub Date: 2022-03-01 DOI: 10.1007/s00393-022-01172-x

Bin Zhang, Luzhao Zheng, Yu Huang

{"title":"Severe pneumonia in patients with systemic lupus erythematosus admitted to the intensive care unit.","authors":"Bin Zhang, Luzhao Zheng, Yu Huang","doi":"10.1007/s00393-022-01172-x","DOIUrl":"10.1007/s00393-022-01172-x","url":null,"abstract":"Background: The aim of this study was to investigate clinical characters and prognosis of patients with systemic lupus erythematosus (SLE) and severe pneumonia admitted to the intensive care unit (ICU).Materials and methods: We conducted a retrospective study that reviewed all clinical records of patients with SLE and severe pneumonia admitted to the ICU between 2008 and 2020.Results: A total of 86 SLE patients with severe pneumonia during their first ICU admission were enrolled in this study. Most patients were female (n = 71, 82.5%), and the median age was 42.3 ± 14.7 years. The most common organisms were gram-positive bacteria (20.9%), followed by gram-negative bacteria (18.6%) and fungi (10.4%). A total of 31 patients died within 30 days of ICU admission, and the 30-day mortality was 36%. In binary logistic regression analysis, Acute Physiologic and Chronic Health Evaluation II (APACHE II) score, Sequential Organ Failure Assessment (SOFA) score and mechanical ventilation were dependently associated with 30-day mortality (odds ratio [OR] 2.97, P = 0.016; OR = 4.02, P = 0.023; OR = 1.52, P = 0.036; respectively). Among the other 55 patients, 5 patients died after discharge from the ICU during the long-term follow-up.Conclusions: Mortality was high in SLE patients with severe pneumonia admitted to the ICU, and most of the patients died within 30 days of ICU admission.","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"23 1","pages":"148-153"},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73999884","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Examining Mastery Orientation Among Youth in Latino/a Migrant Farmworker Families 考察拉丁裔/非拉丁裔农民工家庭青少年的掌握取向

IF 2.1 3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-01 DOI: 10.1007/s10826-024-02792-4

Yumary Ruiz, Lucrecia Mena-Meléndez, Zoe P. Starkey, Zoe E. Taylor

{"title":"Examining Mastery Orientation Among Youth in Latino/a Migrant Farmworker Families","authors":"Yumary Ruiz, Lucrecia Mena-Meléndez, Zoe P. Starkey, Zoe E. Taylor","doi":"10.1007/s10826-024-02792-4","DOIUrl":"https://doi.org/10.1007/s10826-024-02792-4","url":null,"abstract":"Latino/a children in migrant farmworker (LMFW) families are an underrepresented student subpopulation at high risk of school-dropout. To understand the factors that contribute to school competency in children in LMFW families, this mixed-method study examined academic mastery and explored perspectives from children, mothers, and Migrant Education Program (MEP) providers. Youth in LMFW families aged 8–18 (N = 65, Mage = 12.9, 52% male, 65% U.S. born, 51% moved 1-or-more times) were surveyed. Some youth aged 10–18 (n = 24, Mage = 13.9, 67% boys, 79% born in the U.S., 54% moved 1 or more times) were interviewed. One focus group was held with LMFW mothers (N = 9) and two with MEP (N = 18) providers (teachers and staff). Multivariate regression was used, and thematic analysis revealed three themes: (1) LMFW parents’ school involvement, (2) LMFW student-teacher relationships, and (3) mobility and LMFW students’ schooling. Triangulated results converged concerning mother school involvement and academic mastery. However, teacher attachment and mobility were quantitatively found to be insignificant, which diverged from qualitative findings. Unique qualitative findings related to non-traditional parental school involvement emerged. Findings have implications for efforts aimed at bolstering mastery orientation among youth in LMFW families.","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"190 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139678613","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Living with a Rare Disease: Psychosocial Impacts for Parents and Family Members – a Systematic Review 与罕见病共存：对父母和家庭成员的社会心理影响--系统综述

IF 2.1 3区心理学

Journal of Child and Family Studies Pub Date : 2024-02-01 DOI: 10.1007/s10826-024-02790-6

Jenny C. Atkins, Christine R. Padgett

{"title":"Living with a Rare Disease: Psychosocial Impacts for Parents and Family Members – a Systematic Review","authors":"Jenny C. Atkins, Christine R. Padgett","doi":"10.1007/s10826-024-02790-6","DOIUrl":"https://doi.org/10.1007/s10826-024-02790-6","url":null,"abstract":"As rare diseases often have an onset of symptoms in childhood, the burden of the disease and associated challenges commonly fall to the individual’s family members. Managing this burden, and navigating these challenges, has been found to affect the health and lifestyle of family members and lead to them experiencing negative psychosocial impacts and lower quality of life. The aim of the current study was to consolidate and summarise the published quantitative evidence on the psychosocial impacts experienced by individuals who have a family member with a rare disease. We performed a systematic literature search including quantitative studies on psychosocial impacts experienced by family members of individuals with a rare disease across three databases (PubMed, PsychINFO, and CINAHL) from inception to November 2021. Of the 2024 titles identified, 30 studies met the inclusion criteria and were included in the review. A narrative analysis revealed that family members of individuals with rare disease experience a wide range of psychosocial impacts, some of which appear to be unique to, or amplified by, the rarity of the disease. Whilst there are occasional positive outcomes of having a family member with a rare disease, overall family members have been found to experience increased psychological distress, lower quality of life, higher caregiver burden and changes to their social support. Clinical and practical implications of these findings are discussed, as well as implications and directions for future research.","PeriodicalId":48362,"journal":{"name":"Journal of Child and Family Studies","volume":"200 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139678621","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0