Purpose
This study aimed to examine correlates of caregiver burden and health-related quality of life (HRQoL) among primary family caregivers of individuals with schizophrenia in inpatient ...psychiatric rehabilitation facilities.
Methods
A cross-sectional study was conducted with 157 Taiwanese primary family caregivers of individuals with schizophrenia residing in inpatient psychiatric facilities. Measures included socio-demographic questionnaires and clinical information, Mutuality Scale, Family Crisis-Oriented Personal Evaluation Scales, Zarit Burden Interview, and World Health Organization Quality of Life-brief version. To describe the degree of caregiver burden and domains of HRQoL, descriptive statistics were computed. Independent sample
t
test, one-way analysis of variance, and Pearson’s correlation analysis followed by multiple regression analyses were performed to determine correlations and relationships between characteristics of patients and primary family caregivers with caregiver burden and domains of HRQoL.
Results
Primary family caregivers experienced mild to moderate caregiver burden and poor HRQoL. Primary family caregivers who were older and unemployed, caring for patient’s severe psychiatric symptoms, and had low monthly incomes, decreased mutuality, and fewer family coping strategies were associated with greater caregiver burden and poor HRQoL. Greater mutuality and family coping strategies of reframing and seeking spiritual support were the most significant factors in improving caregiver burden and all domains of HRQoL, respectively.
Conclusion
Family-focused interventions for caregivers of institutionalized persons with schizophrenia that include psychological support and peer support groups are recommended to enhance mutuality and family coping strategies, reduce caregiver burden, and improve HRQoL.
Background:
There is a lack of clarity regarding the correlation of caregiving knowledge and skills with caregiving experiences of people living with schizophrenia (PLSs). To address this gap, this ...comprehensive study examines the relationships of caregiving knowledge and skills to the primary family caregiver's experiences of burden, psychological well-being (stress, anxiety, depression, caregiving rewarding feelings), and coping styles in China.
Methods:
A total of 395 primary family caregivers of PLSs were enrolled in a cross-sectional study between May 2019 and September 2019. Each family caregiver was independently assessed on caregiving knowledge and skills, caregiver burden, and psychological well-being, as well as coping styles.
Results:
A higher level of caregiving knowledge and skills was positively correlated with less stress (
b
= −0.48,
P
< 0.001), anxiety (
b
= −0.23,
P
= 0.029), depression (
b
= −0.29,
P
= 0.013), and more caregiving rewarding feelings (
b
= 0.54,
P
< 0.001). Also, caregivers with more knowledge and skills were more inclined to adopt positive coping strategies (
b
= 0.44,
P
< 0.001). Despite these differences, caregivers with different levels of caregiving knowledge and skills reported comparable caregiver burden (
b
= 0.11,
P
= 0.705) and the use of a passive coping style (
b
= 0.10,
P
= 0.169).
Conclusion:
Caregiving knowledge and skills are a reliable predictor of psychological well-being and active coping among the primary family caregivers of PLSs. These findings inform the development of psychoeducational interventions to support family caregivers of PLSs.
To investigate reported burden by the Primary Family Caregiver (PFC) 7-years after severe pediatric traumatic brain injury in the TGE (Traumatisme Grave de l'Enfant) longitudinal study.
Subjective ...burden was estimated with the Zarit Burden Inventory (ZBI) in 36 PFC (parents), who rated their own health status (Medical Outcome Study Short Form-12), family functioning and their child's level of care and needs (Pediatric/Adult Care And Needs Scale PCANS/CANS). Data collection included: child and PFC sociodemographic characteristics, injury-related factors, 'objective' (e.g. overall level of disability: Glasgow Outcome Scale - Extended, GOS-E/GOS-E-Peds) and 'subjective' outcomes (e.g. participation, behavior, executive functions, quality of life and fatigue).
25% of PFC reported mild-moderate burden, and 19% moderate-severe burden. Higher burden correlated with worse outcomes in all 'subjective' PFC-rated outcomes, and with self-reported participation. The ZBI correlated strongly with CANS/PCANS and GOS-E/GOS-E-Peds. Overall level of disability and PFC-reported executive functioning explained 62% of the ZBI variance. For equal levels of disability, burden was higher when PFC reported a 'negative' picture of their child.
Significant PFC-reported burden 7-years post-injury was associated with overall disability and 'subjective' PFC-rated outcomes. Factors influencing parental burden in the long term should be identified and psychological support implemented over time.
Caregiving for patients with schizophrenia is often challenging and may increase the risk of psychiatric morbidity among primary family caregivers. However, the associated factors of psychiatric ...morbidity among caregivers have not been fully investigated.
This study aimed to screen psychiatric morbidity and its correlates among primary family caregivers of persons with schizophrenia receiving inpatient psychiatric rehabilitation services.
A cross-sectional, correlational design was used. A total of 184 Taiwanese primary family caregivers in inpatient psychiatric rehabilitation units participated in the study. Descriptive statistics, Chi-square tests, independent t-tests, and a stepwise binary logistic regression analysis were performed to examine the association among primary family caregivers' psychiatric morbidity and primary family caregivers' sociodemographic characteristics and mutuality and patients' sociodemographic and clinical characteristics.
The prevalence of psychiatric morbidity among primary family caregivers was 48.4%. Unemployment, lower mutuality, additional dependents in need of care, and caring for patients with more psychiatric hospitalizations were the most significant factors for psychiatric morbidity among primary family caregivers.
Mental healthcare professionals should recognize patients and their primary family caregivers as a unit of care. Primary family caregivers must receive increased assistance, including supportive resources and therapeutic interventions, to reduce psychiatric morbidity.
Primary family caregivers of hemodialysis patients are the "hidden patients" who shoulder extraordinary care burdens. However, there is a dearth of studies in Ethiopia. The purpose of this study was ...to explore the lived experience of primary family caregivers of hemodialysis patients in Southern Ethiopia.
Qualitative phenomenological study design was employed in February 2021. A homogeneous purposive sampling technique was applied to select study participants. An in-depth interview using an interview guide and field notes were used to collect the required data. All interviews were recorded using a digital audio recorder. Data coding was assisted by Open code software version 4.03. Inductive thematic analysis was used to develop the emerged themes and sub-themes using Colaizzi's 1978 seven-step phenomenological analysis method. The themes and sub-themes are described in detail in the respective heading and sub-headings.
A total of twelve participants were involved in the present study. Bio-psychological experience, socio-economic impact, and healthcare provider-primary family caregiver relationships are the major themes that emerged from the data. The emotional responses, coping mechanisms, consequences on the family caregivers' health, care fatigue, lifestyle change, economic burden, impact on social responsibility, social support, the role of the primary family caregiver, and trust and confidence in the service providers are the sub-themes defining primary family caregivers caring experience.
In this study, emotional instabilities and reactions, care fatigue, distortion of caregiver's health, multiple economic and social damages are the major challenges faced by primary family caregivers.
Accessible summary
What is known on the subject?
Families act not only as the primary support for people with a diagnosis of schizophrenia but also as partners in the healthcare system.
Families who ...have members with mental disorders, particularly schizophrenia, experience challenges in family functioning.
Research on families in relation to schizophrenia primarily focuses on the determinants that affect family functioning from primary family caregivers' perspectives.
What does the paper add to existing knowledge?
This report provides evidence that there is a concordance between family functioning and inpatient psychiatric rehabilitation facilities for the patient–caregiver dyad; both care‐receivers and primary family caregivers considered family functioning as poor.
Care‐receivers with lower education levels, increased number of previous hospitalizations and poor quality of family‐centred care experienced unhealthy family functioning.
Primary family caregivers and care‐receivers with higher education levels, lower suicidality and greater quality of family‐centred care experienced healthier family functioning.
What are the implications for practice?
Understanding the degree of family functioning, particularly its concordance and correlates as perceived by patients and primary family caregivers, may serve as a platform for inculcating assessment of family functioning to achieve holistic patient care.
Open dialogue in family‐focused care planning is essential to facilitate collaborative partnerships and improve family functioning among people with a diagnosis of schizophrenia and their primary family caregivers.
Further research on culturally relevant, evidence‐based family interventions to enhance the functioning of affected families is warranted, especially for families with members in inpatient psychiatric rehabilitation facilities.
Introduction
Families provide frontline caregiving support for people with a diagnosis of schizophrenia. However, research primarily addresses correlates of family functioning from primary family caregivers' perspectives.
Aim
To examine perceived family functioning, particularly its concordance within patient–caregiver dyads and associated factors in families of people living with schizophrenia.
Methods
A cross‐sectional, descriptive correlational design was used. A total of 133 dyads of patients and primary family caregivers from inpatient psychiatric rehabilitation services participated. Descriptive statistics, independent‐sample t test, one‐way ANOVA, Pearson's correlation coefficients, intraclass correlation coefficient and stepwise multiple linear regression analyses were applied.
Results
Family functioning was perceived as impaired by patient–caregiver dyads, and there existed a concordance in this regard. Patients' and family caregivers' education levels, patients' suicidality, number of previous hospitalizations and quality of family‐centred care correlated with patients' and primary family caregivers' family functioning.
Discussion
Findings highlight the importance of patient‐ and family‐reported family functioning with implications to address individual and collective concerns.
Implications for Practice
Evidence‐based family interventions are crucial for assisting vulnerable families in promoting family functioning. Mental health nurses should facilitate collaboration and open dialogue concerning perspectives of patients and families to improve delivery of comprehensive mental health care.
Nondisclosure of cancer diagnosis continues to be practiced in India, with many family caregivers concealing it from patients in order to protect them from emotional distress.
The aim of this study ...was to explore Indian primary family caregivers' reasons for, and experiences of, disclosure versus nondisclosure to patients about their cancer diagnosis.
Indian disclosing (n = 8) and nondisclosing (n = 7) primary family caregivers participated in semistructured interviews exploring their reasons for disclosure versus nondisclosure of cancer diagnosis to their patient. Qualitative content analysis was used to classify the reasons for and for not disclosing. Illustrative quotes were selected to highlight caregivers' motivations for, and experiences of, each reason.
The findings revealed 6 main reasons for disclosing (emotional well-being, lack of control, preparing the patient, family reasons, patient's personality, and longevity/curability of the disease) and 6 reasons for not disclosing (emotional well-being, family reasons, patient's personality, longevity/curability of the disease, barriers to communication, and disease severity). Typically, disclosing caregivers considered reasons for as well as against disclosure, whereas nondisclosing caregivers considered reasons against disclosure.
Most of the reasons given for disclosing and not disclosing were the same, although these reasons operated differently for disclosing and nondisclosing caregivers. In addition, justification for these reasons demonstrated cognitive consistency effects that appeared to reduce any feelings of dissonance regarding caregivers' disclosure, or nondisclosure, decisions.
Cancer nurses should provide additional psychological support to nondisclosing caregivers, especially with regard to how they view and engage in their caregiving role.
During home isolation due to the coronavirus disease, family caregivers assumed the responsibility of caring for infected family members; however, the full extent of the difficulties and challenges ...they encountered remains unclear. This study applied a descriptive phenomenology approach, using semi‐structured, one‐on‐one, in‐depth interviews to explore the experiences of 16 primary family caregivers during home isolation amid the coronavirus disease. The key themes identified were as follows: (1) protecting family, comprising anxiety over preventing infection and bearing the responsibility of caregiving and a concern about the diagnosis; (2) seeking stability, encompassing the impact of epidemic control policies on daily routines, strategies to overcome obstacles caused by quarantine measures, and gathering resources and receiving support; and (3) reflections on life, including favoring love over discrimination, rediscovering oneself, cherishing family, and acknowledging personal growth and dedication. This study highlights that family members who took on caregiving roles due to obstacles or health risks faced significant pressure to protect their family members during isolation and actively sought professional consultation and acquired caregiving skills to enhance their confidence and adaptability.
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