Caring for children with medical complexity at home: An integrative review.

PROBLEM: Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home. ELIGIBILITY CRITERIA: Refereed research articles related to the experiences of parental caregivers of CMC living in the United States published after 2014. SAMPLE: 1967 articles were obtained on initial literature search. Using the PRISMA algorithm, ten articles published between 2018 and 2022 were ultimately selected for appraisal. RESULTS: Parental caregiver burden was consistently attributed to barriers and gaps among social-cultural, physical, political, legal, economic, technological, and educational elements of the bureaucratic healthcare system. CONCLUSIONS: Weaknesses across the bureaucratic elements of the healthcare system prevent CMC from consistently receiving necessary care which in turn, contribute to feelings of burden among their parental caregivers. Efforts to alleviate burden experienced by parental caregivers should focus on addressing gaps within the healthcare bureaucracy. IMPLICATIONS: Nurses are well-positioned to address these gaps through clinical work, advocacy, and research. Future research should further examine the appropriateness of using BCT to better understand the implications of systems-level weaknesses on parental caregiver burden. Parental caregivers of CMC should be closely involved in this process.

The Effect of a Mindful Self-Compassion Intervention on Burden, Express Emotion and Mental Well-Being in Family Caregivers of Patients with Schizophrenia: A Randomized Controlled Trial.

The objective of this randomized controlled trial was to examine the impact of a mindful self-compassion intervention on burden, express emotion, and mental well-being in family caregivers of patients with schizophrenia. Standardized measures, including the ZARIT Caregiving Burden Scale, Expressed Emotion Scale and Warwick-Edinburgh Mental Well-Being Scale, were administered at baseline, post-intervention. Statistical analysis was conducted to assess differences between the two groups. Significant reductions in caregiver burden, expressed emotion, and enhanced mental well-being in the intervention group compared to the control group at post-intervention. The results of this randomized controlled trial indicate that the mindful self-compassion intervention significantly reduces caregiver burden, expressed emotion, and improves mental well-being in family caregivers of patients with schizophrenia. These findings underscore the potential utility of mindful self-compassion interventions as effective support for this population, highlighting the importance of integrating such interventions into caregiver support programs.

The effect of mindfulness-based compassionate living training for informal caregivers of palliative inpatients on burnout and caregiving burden: a randomized controlled trial.

This study was conducted to determine the effect of Mindfulness-Based Compassionate Living (MBCL) training given to the informal caregivers of palliative patients on burnout and caregiving burden. A single-blind, randomized, controlled, experimental study was conducted with 54 caregivers of patients admitted to a hospital palliative care unit. The participants were randomly allocated to the experimental group (n = 26) and control group (n = 28). The experimental group received MBCL training twice a week for 4 weeks. Data were collected before and after the intervention using the Maslach Burnout Inventory, Caregiver Burden Scale and Self-Compassion Scale-Short Form. The data were analyzed using kurtosis and skewness coefficients, number, percentage, mean, standard deviation, chi-square test, independent samples t test, Wilcoxon signed ranks test and Mann-Whitney U test in SPSS version 22.0. The informal caregivers in the experimental group demonstrated a significant decrease in emotional exhaustion and depersonalization scores and an increase in personal accomplishment and self-compassion scores in posttest assessments after the MBCL intervention (P < 0.05). All of these parameters differed significantly between the experimental and control groups after the intervention (P < 0.05). MBCL training seems to be effective in reducing emotional exhaustion and depersonalization and increasing personal accomplishment and self-compassion among informal caregivers of palliative inpatients. The results of this study can be generalized to the caretakers of patients receiving palliative care in university hospitals.

Spirituality moderates the relationship between cancer caregiver burden and depression.

OBJECTIVES: Cancer has become a chronic disease that requires a considerable amount of informal caregiving, often quite burdensome to family caregivers. However, the influence of spirituality on the caregivers' burden and mental health outcomes has been understudied. This study was to examine how caregiver burden, spirituality, and depression change during cancer treatment and investigate the moderating role of spirituality in the relationship between caregiver burden and depression for a sample of caregivers of persons with cancer. METHODS: This secondary analysis used a longitudinal design employing 3 waves of data collection (at baseline, 3 months, and 6 months). Family caregivers completed the Caregiver Reaction Assessment, Spiritual Perspective Scale, and the PROMIS® depression measure. Linear mixed model analyses were used, controlling for pertinent covariates. RESULTS: Spirituality, total caregiver burden, and depression remained stable over 6 months. More than 30% of the caregivers had mild to severe depressive symptoms at 3 time points. There was evidence of overall burden influencing depression. Of note was a protective effect of caregivers' spirituality on the relationship between depression and caregiver burden over time (b = -1.35, p = .015). The lower the spirituality, the stronger the relationship between depression and burden, especially regarding subscales of schedule burden, financial burden, and lack of family support. SIGNIFICANCE OF RESULTS: Spirituality was a significant resource for coping with caregiving challenges. This study suggests that comprehensive screening and spiritual care for cancer caregivers may improve their cancer caregiving experience and possibly influence the care recipients' health.

Caregiver burden in Parkinson's disease: a mixed-methods study.

BACKGROUND: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden. METHODS: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively. RESULTS: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism. CONCLUSIONS: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Untangling the role of social relationships in the association between caregiver burden and caregiver health: an observational study exploring three coping models of the stress process paradigm.

BACKGROUND: Caregivers health is often at risk due to the detrimental effects of caregiver burden. It is therefore vital to identify strategies and resources, which ensure the safeguarding of caregivers' health, whilst also enabling caregivers to continue providing high quality long-term care to care-receivers. The objective of this study is therefore to examine the moderating and mediating role of different social relationship constructs (social networks, social support, relationship quality, and loneliness) in the relationship between subjective caregiver burden and health, by exploring different coping models of the stress process paradigm, namely the stress buffering, social deterioration and counteractive models. METHODS: Longitudinal survey data from 133 couples of caregiving romantic partners and persons with spinal cord injury, living in Switzerland were used. We employed multivariable regression analysis with the inclusion of interaction terms to explore moderation effects of social relationships (i.e. stress buffering model), and path analysis to explore mediation effects (i.e. social deterioration vs. counteractive model) of social relationships on the association between subjective caregiver burden and health. Health was operationalised using the following outcomes: mental health, vitality, bodily pain and general health. RESULTS: Social support and relationship quality were found to buffer the negative effects of subjective caregiver burden on mental health. Mediating effects of social relationships were observed for mental health (indirect effect -0.25, -0.42- -0.08) and vitality (indirect effect -0.20, -0.37- -0.03), providing support for the deterioration model. Loneliness was found to be a particularly important construct on the pathway from caregiver burden to health. CONCLUSION: Our study highlights the potential of social support and relationship quality to override the negative consequences of caregiver burden on mental health and vitality. Our evidence thus supports the advance of interventions that seek to improve qualitative aspects of social relationships, especially in caregivers experiencing a high subjective caregiver burden.

Comparative Effectiveness of Behavioral Interventions to Prevent or Delay Dementia: One-Year Partner Outcomes.

BACKGROUND/OBJECTIVE: Various behavioral interventions are recommended to combat the distress experienced by caregivers of those with cognitive decline, but their comparative effectiveness is poorly understood. DESIGN/SETTING: Caregivers in a comparative intervention study randomly had 1 of 5 possible interventions suppressed while receiving the other four. Caregivers in a full clinical program received all 5 intervention components. Care partner outcomes in the study group were compared to participants enrolled in a full clinical program. PARTICIPANTS: Two hundred and seventy-two dyads of persons with amnestic mild cognitive impairment (pwMCI) and care partners enrolled in the comparative intervention study. 265 dyads participated in the full clinical program. INTERVENTION: Behavioral intervention components included: memory compensation training, computerized cognitive training, yoga, support group, and wellness education. Each was administered for 10 sessions over 2 weeks. MEASUREMENTS: A longitudinal mixed-effect regression model was used to analyze the effects of the interventions on partner burden, quality of life (QoL), mood, anxiety, and self-efficacy at 12 months follow-up. RESULTS: At 12 months, withholding wellness education or yoga had a significantly negative impact on partner anxiety compared to partners in the clinical program (ES=0.55 and 0.44, respectively). Although not statistically significant, withholding yoga had a negative impact on partner burden and mood compared to partners in the full clinical program (ES=0.32 and 0.36, respectively). CONCLUSION: Our results support the benefits of wellness education and yoga for improving partner's burden, mood, and anxiety at one year. Our findings are the first to provide an exploration of the impact of multicomponent interventions in care partners of pwMCI.

Predictors of caregiver burden in patients with neurologic Wilson disease.

OBJECTIVES: Caregiver burden in neurologic Wilson disease (NWD) has received little attention. We investigated predictors of caregiver burden in Chinese NWD patients. METHODS: Participants in this retrospective study were NWD patients admitted to The First Affiliated Hospital of Anhui University of Traditional Chinese Medicine from 1 August to 31 December 2019. Sociodemographic information was recorded for caregivers and NWD patients. Caregiver burden was evaluated using the Caregiver Burden Inventory (CBI). Cognitive impairment, functional problems, depression and anxiety were evaluated by professional interviewers. Path analysis was used to evaluate predictors of CBI scores. RESULTS: Sixty NWD patients were enrolled (mean age: 21.35 ± 4.89 years; mean NWD duration: 7.85 ± 3.11 years). The mean CBI score was 52.00 ± 17.16. Care duration had a significant direct effect on CBI score after controlling for confounders (r = 0.493). Cognitive impairment (r = -0.426), functional problems (r = 0.581), depression (r = 0.349) and anxiety (r = 0.317) had significant indirect effects on CBI score. CONCLUSION: Caregivers of NWD patients may experience a medium level of caregiver burden. NWD duration, cognitive impairment, functional problems, depression and anxiety in NWD patients may be useful predictors of caregiver burden.

Caregiver Burden and Spiritual Well-being in Caregivers of Hemodialysis Patients.

The number of hemodialysis patients is increasing worldwide, and the caregivers of these patients experience a great burden. This study was conducted to examine the relationship between caregiver burden and spiritual well-being in caregivers of hemodialysis patients in Kerman, Iran. This correlational study was conducted on 382 caregivers of hemodialysis patients. Data were collected using the Caregiver Burden Inventory (24 items) and Ellison and Paloutzian 20-Item Spiritual Well-being Questionnaire. Data were analyzed by descriptive and inferential statistics (t test, ANOVA, Spearman correlation, and linear regression analysis) in SPSS 20 software. The findings showed that 45 (11.8%) caregivers had mild, 214 (56%) moderate, and 123 (32.2%) high caregiver burden. Furthermore, 1 (0.3%) caregiver had mild, 349 (92.4%) moderate, and 32 (8.4%) high spiritual well-being. Also, Spearman correlation test showed a significant reveres relationship between caregiver burden and spiritual well-being scores (p < 0.001, r = - 0.41). Moreover, the results of the regression analysis showed that the patient's income, frequency of patient dialysis per week, and patient's need to receive care and spiritual well-being were predictors of caregiver burden, which explained 41% of the burden in caregivers. The results of this study revealed that spiritual well-being was negatively related to caregiver burden and was one of its predictors. Therefore, spirituality can be used as a low-cost and effective intervention to reduce the caregiver's burden.

Autocuidado do cuidador e o cuidado de idosos / Caregiver self-care and care of the elderly

Este artigo objetiva discutir sobre a tarefa de cuidar de idosos e as implicações para familiares e profissionais. Na primeira parte, discutiremos a necessidade de capacitação adequada do cuidador. Na segunda parte, apresentaremos atividades para o autocuidado do cuidador e outras baseadas na Política Nacional de Práticas Integrativas e Complementares. Por fim, exporemos atividades que o cuidador pode desenvolver para o cuidado de idosos. Espera-se que essas atividades possam contribuir com a qualidade de vida de cuidadores, bem como com um melhor desempenho de sua função.

This article aims to discuss on the task of caring for the elderly and the implications for families and professionals. In the first part we will discuss the need for adequate caregiver training. In the second part we will present activities for the caregiver self-care and other based on the National Integrative and Complementary Practices Policy. Finally, we will expose activities that the caregiver can develop for care of the elderly. It is expected that these activities may contribute to the quality of life of caregivers, as well as a better performance of its function.