“You Just Have to Keep Going, You Can’t Give Up”: Coping mechanisms among young adults with lupus transferring to adult care

Lupus ◽  
2021 ◽  
pp. 096120332110610
Author(s):  
Nicole Bitencourt ◽  
Ashley Ciosek ◽  
Justin Kramer ◽  
E Blair Solow ◽  
Bonnie Bermas ◽  
...  
Keyword(s):  
Lupus Erythematosus ◽  
Emotional Regulation ◽  
Stressful Life Events ◽  
Meaning Making ◽  
Emotional Responses ◽  
Psychosocial Health ◽  
Coping Mechanisms ◽  
Adult Care ◽  
Hospital System ◽  
Modifiable Factors

Introduction Coping mechanisms and emotional regulation are important contributors to psychosocial health during stressful life events. We sought to describe the coping and emotional responses of persons with childhood-onset systemic lupus erythematosus during the transfer from pediatric to adult healthcare. Methods Semi-structured in-depth one-on-one interviews were conducted with 13 young women aged 18–24 of minority background who had transferred to adult care in a public hospital system. Thematic analysis was used to identify themes motifs from the data. Results Participants described the use of (1) problem-focused coping such as the use of clear communication and self-education, (2) adaptive emotion-focused coping such as cognitive reframing and acceptance, (3) social coping including support-seeking, (4) meaning-making coping including positive religious framing and viewing events as learning opportunities for growth, and (5) disengaged coping including denial and social isolation. A range of emotional responses associated with the transfer were described including fear, anger, loss, and feelings of empowerment and excitement. Conclusion Effective coping and emotional regulation are modifiable factors that may impact transfer-related outcomes and psychosocial health. Addressing coping mechanisms is relevant to the optimized transfer to adult care.

Patient experiences and strategies for coping with SLE: A qualitative study

Lupus ◽  
2021 ◽  
pp. 096120332110160
Author(s):  
Siobhan Case ◽  
Corine Sinnette ◽  
Courtnie Phillip ◽  
Claire Grosgogeat ◽  
Karen H Costenbader ◽  
...  
Keyword(s):  
Focus Groups ◽  
Coping Strategies ◽  
Lupus Erythematosus ◽  
Patient Experiences ◽  
Lessons Learned ◽  
Data Repository ◽  
Adult Care ◽  
Open Communication ◽  
Modifiable Factors ◽  
And Coping

Objective This study explored challenges that patients with systemic lupus erythematosus (SLE) and childhood-onset SLE (cSLE) face to identify modifiable influences and coping strategies in patient experiences. Methods Participants were recruited from two academic medical centers through a Lupus Registry of individuals ≥18 years old and ≥4 1997 ACR classification criteria for SLE and a centralized data repository of cSLE patients, and participated in three focus groups. Transcripts were coded thematically and adjudicated by two independent reviewers. Results Thirteen adults, 7 (54%) with cSLE, participated in focus groups. Themes were categorized into two domains: (1) challenges with SLE diagnosis and management; and (2) patient coping strategies and modifiable factors of the SLE experience. Participants identified five primary challenges: diagnostic odyssey, public versus private face of SLE, SLE-related stresses, medication adherence, and transitioning from pediatric to adult care. Coping strategies and modifiable factors included social support, open communication about SLE, and strong patient–provider relationships. Several participants highlighted positive lessons learned through their experiences with SLE, including empathy, resilience, and self-care skills. Conclusions Patients with cSLE and SLE identified common challenges, modifying influences and coping strategies based on personal experiences. A strong patient–provider relationship and trust in the medical team emerged as key modifiable factors. Deriving optimism from experiences with SLE was unique to several patients diagnosed as children or young adults. Leveraging factors that improved the participants’ experiences living with SLE may be used in future studies to address vulnerabilities in care.

Forced migration and psychosocial health: meaning-making through autobiographical narratives in the UK

2014 ◽  
Vol 7 (1) ◽  
pp. 79-90 ◽  
Author(s):  
Maria Psoinos
Keyword(s):  
Social Context ◽  
Meaning Making ◽  
Forced Migration ◽  
Psychosocial Health ◽  
Autobiographical Narratives ◽  
Narrative Interviews ◽  
Negative Stereotypes ◽  
The Third ◽  
The Uk ◽  
Autobiographical Narrative

This paper explores how refugees in the UK perceive the relation between their experience of migration and their psychosocial health. Autobiographical narrative interviews were carried out with fifteen refugees residing in the UK. The findings reveal a contrast between the negative stereotypes concerning refugees’ psychosocial health and the participants’ own perceptions. Two of the three emerging narratives suggest a more balanced view of refugees’ psychosocial health, since- in contrast to the stereotypes- most participants did not perceive this through the lens of ‘vulnerability’. The third narrative revealed that a hostile social context can negatively shape refugees’ perceptions of their psychosocial health. This runs counter to the stereotype of refugees as being exclusively responsible for their ‘passiveness’ and therefore for the problems they face. 

Meaning in the Context of Stress and Coping

1997 ◽  
Vol 1 (2) ◽  
pp. 115-144 ◽  
Author(s):  
Crystal L. Park ◽  
Susan Folkman
Keyword(s):  
Stressful Life Events ◽  
Meaning Making ◽  
Critical Role ◽  
Empirical Work ◽  
Stress And Coping ◽  
Future Research ◽  
Extended Model ◽  
Critical Dimensions ◽  
Coping Process ◽  
And Coping

Although theoretical and empirical work on topics related to meaning and meaning making proliferate, careful evaluation and integration of this area have not been carried out. Toward this end, this article has 3 goals: (a) to elaborate the critical dimensions of meaning as it relates to stressful life events and conditions, (b) to extend the transactional model of stress and coping to include these dimensions, and (c) to provide a framework for understanding current research and directions for future research within this extended model. First, the authors present a framework for understanding diverse conceptual and operational definitions of meaning by distinguishing 2 levels of meaning, termed global meaning and situationalmeaning. Second, the authors use this framework to review and synthesize the literature on the functions of meaning in the coping process and propose a definition of meaningmaking that highlights the critical role of reappraisal. The authors specify the roles of attributions throughout the coping process and discuss implications for future research.

scholarly journals Emotional Regulation in Adolescent Girls when Experiencing Menstrual Pain or Dysmenorrhea

2021 ◽  
Vol 2 ◽  
pp. 39-42
Author(s):  
Lestari Lestari ◽  
Dyah Siti Septiningsih
Keyword(s):  
Data Analysis ◽  
Young Women ◽  
Emotional Regulation ◽  
Severe Pain ◽  
Psychological Symptoms ◽  
Emotional Responses ◽  
Data Retrieval ◽  
Structured Interviews ◽  
Study Approach ◽  
Regulation Strategies

The biological pride of young women is characterized by a standard physical mechanism of menstruation or menstruation followed by pain in the lower abdomen. The pain results in psychological symptoms such as anxiety, tension, anger, or emotion. Young women who cannot regulate their feelings properly are more likely to experience severe pain or so-called dysmenorrhea. Emotional regulation is the achievement of emotional balance performed by a person either from his attitude or behavior. This study aims to examine the regulation of emotions in young women who experience dysmenorrhea during menstruation. Assessment through aspects of emotional regulation, namely emotional regulation strategies, behaviors to achieve goals, control emotional responses, and acceptance of emotional responses. This research uses qualitative research methods with a case study approach. Data retrieval was conducted through semi-structured interviews of two primary informants and four secondary informants. Credibility using triangulation of sources and methods. Data analysis using interactive model data analysis. This study's findings are that both young women's ability to regulate their emotions during menstruation can relieve severe pain or dysmenorrhea during menstruation.

scholarly journals The Dynamics of Hope in Unkrich and Molina’s Coco

k ta ◽  
2020 ◽  
Vol 22 (2) ◽  
pp. 79-83
Author(s):  
Chia-Chi Chien ◽  
Ya-huei Wang
Keyword(s):  
Emotional Responses ◽  
Coping Mechanisms ◽  
Original Model ◽  
Stage Model ◽  
States Of Mind ◽  
Grieving Process ◽  
Animated Film ◽  
Difficult Times

This study analyzes how the characters in Lee Unkrich and Adrian Molina’s animated film Coco, mainly Mamá Imelda, Héctor, and Miguel, manage their emotional responses when they are facing loss, bereavement, or other significant changes in their lives. The study uses Elisabeth Kübler-Ross’s five-stage model of grief to analyze how these characters go through the grieving process. Moreover, in order to suggest how those who are grieving can enter into positive states of mind, the study expands on Kübler-Ross’s original model by incorporating a positive mindset of hope. In dialogue with Unkrich and Molina’s film, the study uses Kübler-Ross’s ideas to explore coping mechanisms that can help manage difficult times in life, while also suggesting the benefits of maintaining a positive mindset through hope.

scholarly journals CoVidAffect, real-time monitoring of mood variations following the COVID-19 outbreak in Spain

2020 ◽  
Author(s):  
Carlos Bailon ◽  
Carmen Goicoechea ◽  
Oresti Baños ◽  
Miguel Damas ◽  
Héctor Pomares ◽  
...  
Keyword(s):  
Emotional Regulation ◽  
Psychosocial Support ◽  
Psychological Impact ◽  
Emotional Responses ◽  
Subjective Feeling ◽  
Psychological Resilience ◽  
Living Space ◽  
Geographical Regions ◽  
Context Variables ◽  
Citizen Science Project

The COVID-19 outbreak and the ensuing confinement measures are expected to bear a significant psychological impact on the affected populations. Here, we publish a dataset from CoVidAffect, a citizen science project that was launched to provide direct, geolocalized data of changes in subjective feeling and physical arousal following the COVID-19 crisis. These publicly available data are continuously updated and visual summaries are displayed on the project website. The data can be further analyzed to identify affected geographical regions, quantify emotional responses to specific measures and policies, and to understand the effect of context variables, such as living space, socioeconomic status, and practice of physical exercise, on emotional regulation and psychological resilience. Our goal is to offer a resource that will help to anticipate the needs for psychosocial support and facilitate evidence-based policy making.

Juvenile systemic lupus erythematosus

2016 ◽  
Author(s):  
Claire Louise Murphy ◽  
Yiannis Ioannou ◽  
Nicola Ambrose
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Holistic Approach ◽  
Underlying Disease ◽  
Childhood And Adolescence ◽  
Adult Onset ◽  
Systemic Lupus ◽  
Adult Care ◽  
Life Threatening ◽  
The Individual

Juvenile-onset systemic lupus erythematosus (JSLE) is similar to adult-onset SLE, but there are distinct differences in clinical features, serology, and management requirements. It is more aggressive than adult-onset SLE with frequent renal and haematological manifestations and higher mortality rates. The cause of JSLE is unknown but appears to be multifactorial with genetic, immunological, hormonal, and environmental influences. Macrophage activation syndrome is a potentially life-threatening complication, and may mimic the underlying disease or be confused with sepsis. Transferring care from paediatric to adult care can be a difficult milestone and should be tailored to the individual patient. Management requires a multisystemic, holistic approach with recognition of psychosocial factors that occur during normal childhood and adolescence. International collaboration and further research is needed to optimize care for these patients.

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