Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia-spectrum disorders: Flashcards
What was the aim of the study?
To investigate the burdens and difficulties associated with the experience of caring for youth with schizophrenia-spectrum disorders.
What methods were used in the study?
Ten caregivers participated in a modified version of the Knowledge about Schizophrenia Illness interview.
What were the most common difficulties reported by caregivers?
Emotional burdens, everyday practical demands, sacrifices required in caring for their dependents, and difficulties with mental health services.
What was concluded from the study?
Additional work is needed to learn more about the challenges that caregivers face and to develop empirically based strategies for supporting them and their dependents.
Why is early-onset schizophrenia particularly concerning?
It may represent a particularly severe variant of the disorder, characterized by poor premorbid adjustment and poorer outcomes in adulthood.
What role do families play in caring for adults with schizophrenia?
They help initiate and sustain engagement with mental health services and support them through prolonged periods of recovery.
What are the types of burdens experienced by families?
Objective burden includes disruptions in relationships, social and work constraints, and financial difficulties. Subjective burden includes emotional stress, loss, depression, anxiety, and embarrassment.
Why is there little research on caregivers of children and adolescents with schizophrenia?
Most research has focused on adults, and there is a lack of studies exploring the special needs of children and their families.
Who were the participants in the study?
10 caregivers of youth with schizophrenia-spectrum disorders recruited from the University of Hawaii Child and Adolescent Thought Disorder Program.
How were the dependents diagnosed?
Using the Children’s Interview for Psychiatric Syndromes, supplemented by other measures like the Kiddie-Schedule for Affective Disorders and the Child Behavior Checklist.
What were the demographic characteristics of the caregivers?
Eight female and two male caregivers, with ethnic backgrounds including Caucasian, Hawaiian or Pacific Islander, Asian, and mixed ethnicity.
What interview method was used to collect data?
A modified version of the Knowledge about Schizophrenia Illness (KASI) interview, which included open-ended questions on caregiving roles, stresses, difficulties, and service provision.
How was data analysis conducted?
Using an inductive content analysis process based on grounded theory, with themes and codes generated from transcripts and a reliability check performed using Cohen’s kappa.
What were the two main categories of burdens identified?
General difficulties and burdens, and difficulties specific to mental health services.
What emotional difficulties did caregivers experience?
Profound sadness, regret, grief, general stress, and worry about the future.
What sacrifices did caregivers make?
Career changes, financial difficulties, loss of normal family and social life, and extensive time demands.
What were some difficulties caregivers faced with mental health services?
Ineffectiveness of services, insufficient information, difficulty obtaining services, logistical problems, and issues with providers.
How did mental health service providers contribute to caregivers’ burdens?
Some caregivers felt providers did not care about or want to help their dependents, were unreliable, unprofessional, or dismissive of concerns.
What recommendations were made for improving caregiver support?
Providing support groups, psychoeducation, therapy, parent training, and accessible respite care to alleviate caregiver burdens.
What differences exist between caregivers of youth and adults with schizophrenia?
Caregivers of youth face additional parenting-related burdens, including concerns about other children, discipline, and managing home routines.
