The Psychosocial Burden of Families with Childhood Blood Cancer

Cancer is the second leading cause of death for children, and leukemias are the most common pediatric cancer diagnoses in Chile. Childhood cancer is a traumatic experience and is associated with distress, pain, and other negative experiences for patients and their families. Thus, psychosocial costs represent a large part of the overall burden of cancer. This study examines psychosocial experiences in a sample of 90 families of children with blood-related cancer in Chile. We provide a global overview of the family experience, focusing on patients, caregivers, and siblings. We find that most families report a negative impact upon diagnosis; disruptions in family dynamics; a range of negative feelings of the patient, such as depression, discouragement, and irritability; and difficulty with social lives. Additionally, they report negative effects in the relationship between the siblings of the patient and their parents, and within their caregivers’ spouse/partner relationship, as well as a worsening of the economic condition of the primary caregiver. Furthermore, over half of the families in the sample had to move due to diagnosis and/or treatment. Promoting interventions that can help patients, siblings, and parents cope with distress and promote resilience and well-being are important.

Exploring Autistic Adults’ Psychosocial Experiences Affecting Beginnings, Continuity, and Change in Camouflaging Over Time- A Qualitative Study

Many autistic people develop camouflaging strategies to mask or compensate for their underlying autism-related differences in order to get by in predominantly non-autistic societies. Autistic adults have described camouflaging as a “lifetime of conditioning to act normal”, suggesting that camouflaging develops over the autistic person’s lifespan. Yet, very little is so far known about the course of camouflaging motivations and behaviours over time or the psychosocial factors that may influence autistic people’s camouflaging trajectories. In an exploratory qualitative study within an Asian sociocultural context, we interviewed 11 Singaporean autistic adults in depth about their camouflaging experiences throughout their lives. We aimed to better understand the beginnings, continuity and changes in their camouflaging motivations and strategies over time, and related psychosocial influences. Interviews were transcribed verbatim and thematically analysed. Twenty-six themes were identified, and were organised across four phases - pre-camouflaging, beginnings, continuity, and change over time. The earliest camouflaging motivations were predominantly relational, linked to a negative self-identity shaped by adverse social experiences. Strategies were increasingly complex and better integrated into one’s sense of self over time, or more selectively engaged in. Our findings highlight the role of psychosocial pressures precipitating camouflaging. They also emphasise the need for both individual psychological and societal-level changes to move from pathologizing autistic differences to acceptance, understanding, and inclusion, so as to reduce psychosocial pressures on autistic people of all ages to camouflage.

Psychosocial Experiences That Support Positive Self-Concept in Children with Cleft Lip and Palate Adopted From China

Objective Existing psychosocial research offers little information on the unique challenges and strengths of children adopted from China with cleft lip and/or palate (CL/P). The present study aimed to understand biopsychosocial factors that support positive self-concept in this population. Design Qualitative, semistructured interviews were conducted with children and their parents. Interpretive phenomenological analysis of transcribed interviews was utilized for data analysis. Setting Participants were recruited in an outpatient, pediatric multidisciplinary cleft clinic during a standard team visit. Patients, Participants Participants were ages 8 to 12 years with a diagnosis of isolated cleft lip-palate who were internationally adopted from China before the age of 2 years and English-speaking. Participants also included English-speaking parents. Results Themes reflecting data from the child and parent subsamples include: (1) child's characteristics, (2) family strengths, (3) adoption identity, (4) cultural identity, (5) coping with a cleft, and (6) social factors. Additional 2 to 3 subthemes were identified for the parent and child subsamples within each broader theme. Conclusions Findings from this sample suggested factors supporting positive self-concept included pride and self-efficacy in activities, family support, instilment of family values, strategies for coping with a cleft, family belonging, cultural exposure, and normalization of differences. Medical providers can support patients and families by providing education on surgeries, CL/P sequelae and outcomes, and pediatric medical stress. Mental health providers can screen for social and emotional challenges and provide psychoeducation on racial/ethnic socialization, identity development, and coping.

Psychological Problems of Pediatric Patients with Thalassemia

Pediatric patients with thalassemia experience various psychosocial problems that have an impact on the decreased quality of life resulting in depression. The purpose of this study was to look at psychosocial problems and things that happen to children and adolescents with thalassemia related psychosocial experiences. The literature study was made by analyzing scientific articles published from 2015-2020 and in English. Data were obtained from the Scopus, Wiley, Pumbed, and Proquest databases with the keywords psychosocial, pediatric, thalassemia, and quality of life. The results of the literature study found 11 articles that matched the inclusion and exclusion criteria. The course of the disease from thalassemia that requires intense treatment, the patient faces a considerable psychological burden. Social isolation, decreased self-esteem, poor academic performance, contribute to psychological stress. This will have an impact on decreasing the quality of life. The results of the review of the literature review can be used as basic data in the development of counseling and mentoring programs for pediatric and adolescent patients with thalassemia major.

Parent couple conflict and emotional and behavioral problems in youth with autism: Longitudinal investigation of bidirectional effects

Families of youth with autism spectrum disorder (ASD) are vulnerable to maladaptive psychosocial experiences, including elevated youth emotional and behavioral problems (EBPs) and poor parent couple relationship outcomes. Yet, the extent to which these family psychosocial experiences are intertwined has been given little research attention. The present study longitudinally investigated the bidirectional associations between parent couple conflict (PCC) and youth EBPs in 188 families of children and adolescents with ASD (initially aged 5 to 12 years) across four time points (T1, T2, T3, T4), each spaced 12 months apart. Mother- and father-report of youth EBPs and PCC were entered into a cross-lagged panel model. After adjusting for youth age and intellectual disability status and parent education and couple relationship length, the results indicated that father-report of PCC predicted increased youth EBPs 12 months later (T1→T2 and T2→T3). In addition, father-report of youth EBPs predicted increased PCC 12 months later (T3→T4). Mother-report did not demonstrate cross-lagged effects. The findings suggest that fathers’ perceptions of PCC and youth emotional and behavioral functioning are transactionally related, highlighting the need for family-wide interventions.

The Voices of Black South African Men on Renal Dialysis at a Tertiary Hospital: A Phenomenological Inquiry

The study explored the psychosocial experiences of rural black South African men undergoing renal dialysis in a tertiary hospital. Twenty men aged between 20 and 59 years ( Meanage = 40.65 yrs; SD = 12.52) participated in the study. Participants were recruited purposefully. Data were collected over a period of 4 months through in-depth face-to-face interviews and analyzed using the Interpretative Phenomenological Analytical method. The following three key themes were extracted from the interviews: (a) the emotional pain and fear of death following a diagnosis of ESRD; (b) living on dialysis interferes with the management and handling of “manly” responsibilities and duties and, (c) dialysis as a challenging yet life-saving measure. The findings further suggest that renal dialysis has an impact on men’s sense of masculinity and has the potential to complicate the management of renal failure. The paper concludes by recommending that cultural and community factors be taken into account when considering interventions to manage the health of men living with renal conditions.

Psychological Problems of Pediatric Patients with Thalassemia

Pediatric patients with thalassemia experience various psychosocial problems that have an impact on the decreased quality of life resulting in depression. The purpose of this study was to look at psychosocial problems and things that happen to children and adolescents with thalassemia related psychosocial experiences. The literature study was made by analyzing scientific articles published from 2015-2020 and in English. Data were obtained from the Scopus, Wiley, Pumbed, and Proquest databases with the keywords psychosocial, pediatric, thalassemia, and quality of life. The results of the literature study found 11 articles that matched the inclusion and exclusion criteria. The course of the disease from thalassemia that requires intense treatment, the patient faces a considerable psychological burden. Social isolation, decreased self-esteem, poor academic performance, contribute to psychological stress. This will have an impact on decreasing the quality of life. The results of the review of the literature review can be used as basic data in the development of counseling and mentoring programs for pediatric and adolescent patients with thalassemia major.