Experience, impact and needs of informal parental caregivers around the communication of a diagnosis of schizophrenia

Aims: To qualitatively characterize the experience, impact and needs of informal family caregivers around the communication of a diagnosis of schizophrenia. Methods: In all, 13 informal family caregivers were recruited. All were parents. Semi-structured interviews were used to explore their experience of the diagnosis of schizophrenia, the impacts of the diagnosis and the needs related to the diagnosis around its communication. Interviews were recorded, transcribed, codes generated and mixed deductive–inductive thematic analysis undertaken. Results: Participants described receiving the diagnosis of schizophrenia for their relative as a devastating experience, although some nuanced the experience with a sense of relief of finally naming the disorder and getting access to care. Caregivers’ experience and representations prior to hearing the diagnosis played an important role in the way the ‘news’ was internalized. The communication of the diagnosis constituted a starting point for acceptance of the reality of the illness in participants. Numerous unmet needs around the communication of the diagnosis were reported by participants, including personnalized support, specific explanations about the disorder and guidance on their role as caregiver. Conclusion: A specific attention must be given to the communication of the diagnosis of schizophrenia to the informal family caregivers. Information giving must be early, comprehensive, personalized and embedded into tailored education and support programmes for caregivers to facilitate illness acceptance and adaptation.

Characterising common challenges faced by parental caregivers of children with type 1 diabetes mellitus in mainland China: a qualitative study

ObjectivesThe mental state of parental caregivers affects outcomes in children with type 1 diabetes mellitus (T1DM). This study aimed to qualitatively examine perception of common challenges among parental caregivers of children with T1DM.SettingSemistructured interviews 45–60 min long were conducted with parental caregivers of children with T1DM. Interview recordings were transcribed and coded in NVivo V.11.0 to observe emergent themes.ParticipantsEligible T1DM caregiving parents (parent(s) and/or legal guardian(s)) were identified from caregivers attending visits with children hospitalised or assessed in the Pediatric Neuroendocrinology Department of Shengjing Hospital, China Medical University in Shenyang from January 2018 to June 2019.Primary and secondary outcome measuresNot applicable.ResultsA total of 20 T1DM caregiving parents were interviewed, aged 30–53 years, including 7 fathers and 13 mothers, with their children whose mean age was 10.6±2.45 years. Content analysis revealed 5 major themes with 13 subthemes, including persistent psychological stress (catastrophic emotions, emotional distress and altered self-efficacy), family function change (altered family life patterns and changes in parental role/function), challenges in daily management (technical challenges, emotional regulation, parent–child conflict and transition of care autonomy from parent to child), financial burden (cost burden of treatment and altered family economics), and lack of social support (social activity limitations and insufficient support system).ConclusionsThe period of emotional disturbance during initial diagnosis, psychological stresses of long-term caregiving, and conflict emerging from transition from parental to child responsibility all can cause psychological response detrimental to parental caregivers and children with T1DM. This work provides compelling evidence for the role of assessment and intervention in parental caregivers’ psychological and emotional well-being in diabetes care, as well as for the necessity of improved social and school support for children with T1DM in China.

Relationships Between Anxiety Symptoms, Hopelessness and Suicidal Ideation Among Parental Caregivers of Mandarin-Speaking Children With Speech Impairment: The Mediating Effect of Depressive Symptoms

Background: Determining the mental health status of parents who chronically care for a child with speech impairment is important for developing appropriate interventions to improve both parents' and children's health and achieve a win-win situation. Unfortunately, no study in China has explored this issue. This study investigated the differences in four aspects of mental health between maternal and paternal caregivers for the Mandarin-speaking children with speech impairment and determine whether depressive symptoms mediate the relationships between anxiety symptoms and suicidal ideation, hopelessness and suicidal ideation.Methods: This cross-sectional questionnaire survey was conducted in February 2020 by sending a link to the predesigned electronic questionnaire in WeChat. Standardized assessment tools were employed. Hierarchical multiple logistic regression was conducted to examine the associations between various factors and suicidal ideation, and two separate structural equation models were performed to evaluate the mediating effects of depressive symptoms in the relationship between anxiety symptoms and suicidal ideation as well as between hopelessness and suicidal ideation.Results: This study included 446 parental caregivers of Mandarin-speaking children with speech impairment. Paternal caregivers had greater score than maternal caregivers on loss of motivation (one of the subdomains of hopelessness). Somatic complications of the child (OR = 2.73, 95% CI: 1.09–6.67) and depressive symptoms (OR = 3.38, 95% CI: 1.83–6.30) were positively associated with caregivers' suicidal ideation. Having speech therapy of child (OR = 0.54, 95% CI: 0.29–0.98) was negatively correlated with caregivers' suicidal ideation. There was direct effect of depressive symptoms on suicidal ideation. Depressive symptoms play mediating roles on the relationships between anxiety symptoms (β = 0.171, p < 0.001) as well as between hopelessness and suicidal ideation (β = 0.187, p < 0.001).Conclusions: Paternal and maternal caregivers of Mandarin-speaking children with speech impairment suffered from mental health problems. Preventive strategies and interventions to ameliorate parental psychological well-being, and health care policies to increase the accessibility to speech therapy care of children with speech impairment are imperative.