Living with the Late Effects of Childhood Cancer Treatment: A Descriptive Qualitative Study

Hansson

et al. 2022

European J Cancer Care

Objective: In this sub-study from the 'PACCS' study, we explored the psychosocial experiences of children and adolescents in everyday life post-cancer treatment and the possible factors that can moderate these experiences.Methods: This is a qualitative explorative study using semi-structured interviews with 43 childhood cancer survivors between the ages of nine and 18 from Norway and Denmark. We conducted a secondary thematic analysis using Malterud's systematic text condensation. Results: Two main themes were identified: 'The post-treatment gap between expectations and reality' comprised two subthemes: (1) lack of mastery and feeling different and (2) lack of understanding and acceptance. The second main theme, 'Managing the gap', comprised three subthemes: (1) information and knowledge, (2) adjustments and adaptions and (3) social support and openness. The findings reveal that the psychosocial challenges resulted from the remaining ability gap(s). Measures such as tailored information, school adjustments and social support were potential dynamic factors affecting the gap(s) positively or negatively. Psychosocial challenges post-treatment are experiences of lack of acceptance and understanding from others. Conclusion: To safeguard a positive transition back to everyday life, health care providers should support the survivors' psychosocial care, including getting back to school and re-entering social interactions.

Section: Discussionsupporting

confidence: 92%

The gap between expectations and reality: A qualitative study of psychosocial challenges of young childhood cancer survivors from the PACCS study

Hansson

et al. 2022

European J Cancer Care

“…Childhood cancer can have a long-lasting impact on survivors, as individuals may experience physical, social, and mental stress post-treatment when they are young adults [ 35 , 36 ]. Our findings are important as the psychological well-being of families is associated with resilience, or the ability to adapt and function when facing adversity [ 34 ].…”

Section: Discussionmentioning

confidence: 99%

The Psychosocial Burden of Families with Childhood Blood Cancer

Borrescio-Higa

Valdés

2022

IJERPH

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.

“…To distillate recovery resources from an ecological point of view, the overarching categories in the coding frame were predefined and consisted of the three levels of recovery capital, namely personal, social, and community recovery capital [ 11 , 31 ]. Upon familiarization with the data, the subcategories emerged through an iterative process of open (i.e., inductive coding of relevant aspects in the interviews separately) and axial coding (i.e., identifying commonalities and grouping together subthemes) [ 32 ]. To increase the validity of the research and to enhance intercoder reliability [ 33 ], the first two authors independently coded and categorized five rich interviews into a coding framework.…”

Section: Methodsmentioning

confidence: 99%

Recovery Capital among Migrants and Ethnic Minorities in Recovery from Problem Substance Use: An Analysis of Lived Experiences

Pouille

Bellaert

Laenen

et al. 2021

IJERPH

Migrants and ethnic minorities (MEM) are known to be disadvantaged concerning risk factors for problem substance use and resources to initiate and sustain recovery (i.e., recovery capital). Yet, the voices of MEM are largely overlooked in recovery literature. This study explores recovery capital through 34 semi-structured interviews with a diverse sample of MEM in recovery in two ethnically diverse cities in Belgium. A Qualitative Content Analysis using recovery capital theory allowed us to identify various recovery resources on a personal, social, and community level. While physical and human recovery resources play a central role in participants’ narratives, personal recovery capital is closely intertwined with meaningful social networks (i.e., social recovery capital) and recovery-supportive environments that maximize opportunities for building culturally sensitive recovery capital (i.e., community recovery capital). Though MEM-specific elements such as culture, migration background, stigma, and structural inequalities play a significant role in the recovery resources of MEM, the largely “universal” nature of recovery capital became clear. The narratives disclose a distinction between “essential” and “acquired” recovery capital, as well as the duality of some recovery resources. The need for developing recovery-oriented systems of care that are culturally responsive, diminish structural inequalities, and facilitate building recovery capital that is sensitive to the needs of MEM is emphasized.