Challenge of parents caring for children or adolescents with early‐stage schizophrenia in China: A qualitative study

Xiu-juan, Bai; Luo, Zhongchen; Wang, Anni; Guan, Ziyao; Zhong, Zhaoyang; Sun, Mei; Tang, Siyuan

doi:10.1111/ppc.12492

Cited by 9 publications

(4 citation statements)

References 33 publications

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“…The audio recordings were transcribed immediately after the interview, new concepts were identified, and the degree of data saturation was measured [34][35][36][37]. In addition, to confirm the accuracy of content and key messages, participants were asked to review a brief summary of the interview and a couple of quotes, and comment if necessary [35,37].…”

Section: Discussionmentioning

confidence: 99%

Stakeholder Perspectives on Barriers and Facilitators for the Adoption of Virtual Clinical Trials: Qualitative Study

Coert¹,

Timmis²,

Boorsma³

et al. 2021

J Med Internet Res

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Background Conventional clinical trials are essential for generating high-quality evidence by measuring the efficacy of interventions in rigorously controlled clinical environments. However, their execution can be expensive and time-consuming. In addition, clinical trials face several logistical challenges regarding the identification, recruitment, and retention of participants; consistent data collection during trials; and adequate patient follow-up. This might lead to inefficient resource utilization. In order to partially address the current problems with conventional clinical trials, there exists the need for innovations. One such innovation is the virtual clinical trial (VCT). VCTs allow for the collection and integration of diverse data from multiple information sources, such as electronic health records, clinical and demographic data, patient-reported outcomes, anthropometric and activity measurements, and data collected by digital biomarkers or (small) samples that participants can collect themselves. Although VCTs have the potential to provide substantial value to clinical research and patients because they can lower clinical trial costs, increase the volume of data collected from patients’ daily environment, and reduce the burden of patient participation, so far VCT adoption is not commonplace. Objective This paper aims to better understand the barriers and facilitators to VCT adoption by determining the factors that influence individuals’ considerations regarding VCTs from the perspective of various stakeholders. Methods Based on online semistructured interviews, a qualitative study was conducted with pharmaceutical companies, food and health organizations, and an applied research organization in Europe. Data were thematically analyzed using Rogers’ diffusion of innovation theory. Results A total of 16 individuals with interest and experience in VCTs were interviewed, including persons from pharmaceutical companies (n=6), food and health organizations (n=4), and a research organization (n=6). Key barriers included a potentially low degree of acceptance by regulatory authorities, technical issues (standardization, validation, and data storage), compliance and adherence, and lack of knowledge or comprehension regarding the opportunities VCTs have to offer. Involvement of regulators in development processes, stakeholder exposure to the results of pilot studies, and clear and simple instructions and assistance for patients were considered key facilitators. Conclusions Collaboration among all stakeholders in VCT development is crucial to increase knowledge and awareness. Organizations should invest in accurate data collection technologies, and compliance of patients in VCTs needs to be ensured. Multicriteria decision analysis can help determine if a VCT is a preferred option by stakeholders. The findings of this study can be a good starting point to accelerate the development and widespread implementation of VCTs.

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Section: Discussionmentioning

confidence: 99%

Stakeholder Perspectives on Barriers and Facilitators for the Adoption of Virtual Clinical Trials: Qualitative Study

Coert¹,

Timmis²,

Boorsma³

et al. 2021

J Med Internet Res

View full text Add to dashboard Cite

show abstract

“…Schizophrenia patients require a long period of treatment and recovery, which depletes supportive abilities and becomes a burden on the family (Herdman, Kamitsuru & Takao Lopes, 2021), such as difficulty providing for necessities, frustration when Schizophrenia refuses treatment and food (Ntsayagae, Poggenpoel & Myburgh, 2019). Families also face difficult situations in getting along and satisfaction with life together (Campos, Cardoso & Marques-Teixeira, 2019;Bai et al, 2020). The main factor that causes families not to care for Schizophrenia optimally is that information aboutSchizophrenia care for families is still minimal (Bai et al 2020;Mohr et al 2018) and families do not have sufficient formal training or support (Ashcroft et al 2018) There are 21 million cases of schizophrenia worldwide, with a prevalence of 0.24 cases per 1000 population (Benjamin James Sadock 2017).…”

Section: Introductionmentioning

confidence: 99%

“…Families also face difficult situations in getting along and satisfaction with life together (Campos, Cardoso & Marques-Teixeira, 2019;Bai et al, 2020). The main factor that causes families not to care for Schizophrenia optimally is that information aboutSchizophrenia care for families is still minimal (Bai et al 2020;Mohr et al 2018) and families do not have sufficient formal training or support (Ashcroft et al 2018) There are 21 million cases of schizophrenia worldwide, with a prevalence of 0.24 cases per 1000 population (Benjamin James Sadock 2017). The prevalence of schizophrenia in Indonesia increased from 1.3 cases to 7 cases per 1000 population in 2018 (Ministry of Health of the Republic of Indonesia 2018b).…”

Section: Introductionmentioning

confidence: 99%

Relationship Disease Management and Parenting Stress on Families Ability to Care For Schizophrenia

Iswanti,

Motuho Mendrofa,

Nursalam

et al. 2024

PNJ

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Introduction: The inability of families to care for schizophrenia is caused by minimal knowledge and not having sufficient training or formal support. Families are frustrated and make it a burden to care for schizophrenia. The research aimed to determine the relationship between disease management and Parenting stress on the family's ability to care for schizophrenia. Method: Quantitative design with a cross-sectional approach was used. The sample size was 135 families caring for schizophrenia using a purposive sampling technique. The independent variable was disease management and parenting stress, and the dependent variable was the family's ability to care for schizophrenia. The disease management questionnaire was based on the concept of family empowerment by Zhou and Budi Anna Keliat. The parenting stress management questionnaire was developed from the neurobiology of stress concept from Murison, and the family ability questionnaire to care for schizophrenia uses the parenting Tasks in Caring for an Adult with Mental Illness Scale (CTiCAMIS). Data analysis used the Chi-square test with a level of 95%. Results: There was a relationship between disease management (p-value = 0.002 (<0.05)) and parenting stress (p-value = 0.000 (<0.05)) with the family's ability to care for schizophrenia patients. Conclusions: Disease management ability and parenting stress are closely related to the family's ability to care for schizophrenia. Efforts from mental health workers to provide education, training, and assistance are needed through family empowerment programs development to increase the family ability.

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“…1 The barriers make burden for the family causing psychological shock and emotional burden; lack of disease knowledge and care skills; poor medication adherence from the patient; difficulty to get along with patients; conflict in the family or at work; financial burden; and require sufficient social support. 2 This makes the family experience stress triggered by the limitations of the adequacy of the family structure and function, which will inhibit the family from using other resources and create family stress. 3 The prevalence of schizophrenia in the world globally is more than 20 million people, there are 69%, and even more in the world, people with schizophrenia do not get appropriate services.…”

Section: Introductionmentioning

confidence: 99%

Family Support-Based Psychoeducation in Caring Schizophrenic Patients: A Literature Review

Iswanti

Pandin

2022

Preprint

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Background: The burden of family in caring a schizophrenia impacts on psychological shock and emotional burden; lack of disease knowledge and care skills; poor patient medication adherence; the difficulty of getting along with patients; conflict in the family or at work; financial burden; and need adequate social support. Aim: This study discussed how family support takes care of people with schizophrenia with a psychoeducational approach in mental health service settings. Method: A non-systematic literature review was carried out using the PICO (Population, Intervention, Comparison, Outcome) framework utilizing Scopus, CINAHL, and ProQuest databases in the last 5 years, searching with keywords: Family Support AND Schizophrenia OR Family Psychoeducation. Results: Families with schizophrenia experience the most potent stressors on the burden of care borne, in addition to stigma and the frequency of relapse of sufferers. Community care providers can involve the family in various ways, such as providing psychoeducation, supporting the family's physical, emotional and social needs, and behavioral family assessment or family therapy. Conclusion: Mental health services must develop and imply family psychoeducation training.

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Challenge of parents caring for children or adolescents with early‐stage schizophrenia in China: A qualitative study

Cited by 9 publications

References 33 publications

Stakeholder Perspectives on Barriers and Facilitators for the Adoption of Virtual Clinical Trials: Qualitative Study

Stakeholder Perspectives on Barriers and Facilitators for the Adoption of Virtual Clinical Trials: Qualitative Study

Relationship Disease Management and Parenting Stress on Families Ability to Care For Schizophrenia

Family Support-Based Psychoeducation in Caring Schizophrenic Patients: A Literature Review

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