scholarly journals Autismo nas relações parentais: os impactos psicossociais vivenciados por pais de crianças diagnosticadas com TEA / Autism in parental relationships: the psychosocial impacts experienced by parents of children diagnosed with ASD

2021 ◽  
Vol 4 (6) ◽  
pp. 24819-24831
Author(s):  
Adriana Souza Hilário ◽  
Isana Hipólito Azevedo ◽  
Julio Cesar Pinto De Souza
Keyword(s):  
Parental Relationships ◽  
Psychosocial Impacts

scholarly journals Psychosocial impact of COVID-19 on cancer patients, survivors, and carers in Australia: a real-time assessment of cancer support services

2021 ◽  
Author(s):  
Rhiannon Edge ◽  
Carolyn Mazariego ◽  
Zhicheng Li ◽  
Karen Canfell ◽  
Annie Miller ◽  
...  
Keyword(s):  
Content Analysis ◽  
Real Time ◽  
Cancer Patients ◽  
Online Community ◽  
Information Needs ◽  
Healthcare Providers ◽  
Service Demand ◽  
Cancer Support ◽  
Cancer Council ◽  
Psychosocial Impacts

Abstract Purpose This study aimed to explore the psychosocial impacts of the coronavirus disease (COVID-19) pandemic on cancer patients, survivors, and carers in Australia. Methods Using real-time insights from two Cancer Council NSW services—131120 Information and Support Line and Online Community (CCOC) forums—we assessed service demand trends, distress levels (using the distress thermometer), and content from 131120 calls and online posts between 01 December 2019 and 31 May 2020. Emergent themes were identified through an inductive conventional content analysis with 131120 call notes, followed by a deductive directed content analysis on CCOC posts. Results In total, 688 COVID-19-related 131120 calls (n = 496) and online posts (n = 192) were analysed. Service demand peaked in March 2020 and self-reported distress peaked in May 2020 at an average of 8/10 [Mean = 7.5; SD = 0.9]. Five themes emerged from the qualitative analysis: psychological distress and fear of virus susceptibility, practical issues, cancer service disruptions, information needs, and carer Issues. Conclusions The psychosocial impacts of COVID-19 on people affected by cancer are multifaceted and likely to have long-lasting consequences. Our findings drove the development of six recommendations across three domains of support, information, and access. Cancer patients, survivors, and carers already face stressful challenges dealing with a cancer diagnosis or survivorship. The added complexity of restrictions and uncertainty associated with the pandemic may compound this. It is important that healthcare providers are equipped to provide patient-centred care during and after this crisis. Our recommendations provide points of consideration to ensure care is tailored and patient oriented.

scholarly journals “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity

2020 ◽  
pp. 095935352093060
Author(s):  
Jennifer M Cole ◽  
Sarah Grogan ◽  
Emma Turley
Keyword(s):  
Chronic Pain ◽  
Social Relationships ◽  
Thematic Analysis ◽  
Online Survey ◽  
Qualitative Data ◽  
Physical Symptoms ◽  
Role Expectations ◽  
Social Connections ◽  
Women's Identity ◽  
Psychosocial Impacts

Endometriosis is a condition which affects around 1–2% of women worldwide and has profound effects on their everyday lives. Previous research has tended to focus on physical symptoms (such as chronic pain); how women manage changes to their identity and relationships as a result of endometriosis has received less attention. This paper discusses qualitative data examining how women negotiate changes to identity while living with endometriosis, in a social context where women are expected to minimise their symptoms and conform to feminine role expectations. We conducted thematic analysis of 34 replies to an online survey seeking qualitative text responses. The women identified disruptions to personal identity as a result of living with endometriosis. They talked about not feeling like themselves (Theme 1) and about reactions from medical and social connections prompting feelings that they were going “mad” (Theme 2). Participants also expressed feeling as though they were a burden to loved ones (Theme 3), which often resulted in self-silencing (Theme 4). Findings are discussed in the context of Western expectations of women’s roles in social relationships and suggest that professionals who support women with endometriosis should be aware of strategies such as self-silencing which may reduce effective self-care.

Badania biograficzne rodzin więźniów. Refleksja metodologiczna Angelika Cieślikowska-Ryczko 1

2021 ◽  
pp. 135-162
Author(s):  
Angelika Cieślikowska-Ryczko
Keyword(s):  
Methodological Approach ◽  
Family Members ◽  
Research Field ◽  
Correctional Institution ◽  
Research Experience ◽  
Parental Relationships ◽  
Biographical Research ◽  
Narrative Interview ◽  
Definition Of ◽  
Autobiographical Narrative

The article deals with the life situation of the families of prisoners, in particular, parental relationships connected with the experience of incarceration in a correctional institution. During the realisation of the research I noticed many difficulties in finding contact with potential interlocutors, therefore I considered the families of prisoners as an environment “invisible in the research field”. In addition, I defined families of prisoners as marginalised and stigmatised environments. The main aim of the article is to show selected methodological dilemmas that can be encountered through the design and analysis of biographical research of family members of prisoners. The theoretical introduction of the paper as an extended definition of the penitentiary crisis allowed to characterise the dominant trends and directions of research on prisoners’ families. Further, it focused on selected problems of realisation of qualitative research (especially biographical research). I analyse the literature and present my own methodological approach based on the direction of interpretative sociology. Using the potential of the autobiographical narrative interview technique (of the German sociological school of Fritz Schütze), I collected 31 interviews with adult children of prisoners and 30 interviews with parents of prisoners. Finally, I refer to my own research experience and discuss the “usefulness and ineffectiveness” of an autobiographical narrative interview. Moreover, I characterise key reflections on the role of the researcher in obtaining autobiographical narrations. The article is an invitation to discuss the improvement of research procedures, especially in the area of research on family members of persons in prisons.

Caregivers’ role in managing hereditary angioedema and perceptions of treatment-related burden

2021 ◽  
Vol 42 (3) ◽  
pp. S11-S16 ◽  
Author(s):  
Timothy J. Craig ◽  
Aleena Banerji ◽  
Marc A. Riedl ◽  
Jessica M. Best ◽  
Jinky Rosselli ◽  
...  
Keyword(s):  
Hereditary Angioedema ◽  
Genetic Disease ◽  
Online Survey ◽  
Scientific Literature ◽  
Upper Airway ◽  
The United States ◽  
Care Recipient ◽  
Psychosocial Impacts ◽  
Life Threatening ◽  
Familial Caregivers

Hereditary angioedema (HAE) is a rare genetic disease that results in recurrent, debilitating, and potentially life-threatening swelling episodes in the extremities, genitals, gastrointestinal tract, and upper airway. Patients can experience significant burdens related to their disease. Informal or familial caregivers often support patients with HAE and likely share in the disease-related burdens, although there are limited HAE caregiver‐focused reports in the scientific literature. In the United States, we conducted an online survey of adults caring for an individual with HAE to better understand their experiences with the disease and identify psychosocial impacts of providing care for a patient with HAE. Thirty caregivers provided responses to the survey. Most caregivers were family members of the care recipient and many had HAE themselves. Caregivers reported participating in a number of medical-related tasks and experiencing some burdens as a result of caring for a person with HAE.

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