Family involvement in mental healthcare practice: Perspectives of mental health nurses, patients, and caregivers.

INTRODUCTION: Family engagement in care has been advocated to promote recovery for patients with mental health conditions. Attitudes of mental health nurses toward the importance of families influence the way they partner with families in mental healthcare. However, little is known about how mental health nurses engage with families and quality of family-centered care (FCC) perceived by patients and caregivers. The study aimed to examine the mediating effect of family nursing practice on the association between mental health nurses' attitudes toward integrating families into care and quality of FCC perceived by patients with schizophrenia and caregivers. DESIGN: A cross-sectional study was conducted. METHODS: A convenience sample of 143 dyads of patients with schizophrenia and their caregivers and 109 mental health nurses were recruited from inpatient wards at two psychiatric hospitals in Taiwan. Demographic and clinical questionnaires, Families' Importance in Nursing Care-Nurses' Attitudes scale, Family Nursing Practice Scale, and Measure of Process of Care for Adults were used to collect data. Data were analyzed using descriptive statistics, independent-sample t-tests, one-way analysis of variance, Pearson correlation coefficients, paired-sample t-tests, and intraclass correlation coefficient (ICC). Mediation analyses were performed using Hayes' PROCESS macro in SPSS (Model 4) with bootstrapping. RESULTS: Mental health nurses exhibited supportive attitudes toward integrating families into care (Mean = 98.96) and greater perceptions of family nursing practice (Mean = 2.44). The concordances between patients and caregivers on perceived quality of family-centered care were significant (ICC = 0.63-0.77). Attitudes of mental health nurses toward integrating families into care had both the total and direct effects on all domains of quality of FCC perceived by patients and caregivers, respectively. The indirect effects of mental health nurses' attitudes toward integrating families into care on aspects of quality of FCC through family nursing practice were significant for patients (95% bias-corrected bootstrap CI of 0.015-0.053) and caregivers (95% bias-corrected bootstrap CI of 0.004-0.041). The magnitude of the indirect effects was medium to large for patients (ES = 0.209-0.257) and caregivers (ES = 0.148-0.221). CONCLUSION: Family nursing practice partially mediated the association between mental health nurses' attitudes toward integrating families into care and aspects of quality of FCC from perspectives of patients and caregivers. CLINICAL RELEVANCE: Interventions tailoring mental health nurses' practice skills and reciprocity with families have the potential to enhance supportive attitudes of mental health nurses toward working with families and further improve perceived quality of FCC in patient-caregiver dyads in mental healthcare practice.

Prolonged mechanical ventilation and caregiver strain: Home vs. long-term care facility.

OBJECTIVE: The number of patients treated with prolonged mechanical ventilation (PMV) is steadily rising. Traditionally treated within specialized long-term care facilities (LTCFs), healthcare providers are increasingly promoting homecare as a technologically safe, humane, and cheaper alternative. Little is known concerning their informal caregivers (ICGs), despite their crucial role in facilitating care. This study examines caregiver strain among the primary ICG of PMV patients treated at home vs. LTCF. METHOD: This study was an observational cross-sectional study. The study enrolled 120/123 PMV patients ≥18 years within the study region (46 treated with homecare/74 treated at the LTCF) and 106 ICGs (34 ICGs/46 homecare patients and 72 ICGs/74 LTCF patients). Caregiver assessment included the 13-item Modified Caregiver Strain Index (Mod CSI) (0-26 maximum); patient assessment included symptom burden (the revised Edmonton Symptom Assessment System). RESULTS: The mean age of ICGs was 58.9 years old; 60.4% were females; 82.1% were married; 29.2% were patient's spouses; and 40.6% were patient's children. The total Mod CSI was 13.58 (SD 6.52) and similar between home vs. LTCF (14.30 SD 7.50 vs. 13.26 SD 6.03, p = 0.50), or communicative vs. non-communicative patients (13.50 SD 7.12 vs. 13.64 SD 6.04, p = 0.93). Hierarchical analysis identified three clusters of caregiver strain, with ICGs at home vs. LTCF reporting significantly lower mood strain, higher burden, and similar levels of lifestyle disturbance. In adjusted models, homecare was significantly associated with reduced mood strain and increased burden, while increased patient symptomatology was significantly associated with total strain, mood, and burden strain clusters. SIGNIFICANCE OF RESULTS: Recognizing the different patterns of caregiver strain at home or LTCF is a prerequisite for addressing their palliative care needs and improving the wellbeing and resilience of informal caregivers, who often play a critical role in deciding whether to treat the PMV patient at home or LTCF.

Psychological distress among Chinese patients with breast cancer undergoing chemotherapy: Concordance between patient and family caregiver reports.

AIMS: To examine patient-caregiver concordances about psychological distress among Chinese patients with breast cancer undergoing chemotherapy and identify factors related to concordance among patients and family caregivers. DESIGN: Cross-sectional study. METHODS: From October 2019 to June 2020, 137 patient-caregiver dyads were enrolled. Sociodemographic information, the distress thermometer (including the problem list), the Distress Disclosure Index and the Family Adaptability and Cohesion Evaluation Scale were used to collect data. Data were analysed using intraclass correlation coefficients (ICC), kappa statistics, two related samples test, chi-square tests and/or Fisher's exact tests and binary logistic regression. RESULTS: Overall, fair agreement was identified between patients' and caregivers' reports (intraclass correlation coefficients [ICC] = .528). Patients reported significantly higher psychological distress scores than paired caregiver reports. Lower psychological distress concordance was found among patients with comorbidities (odds ratio [OR], 0.352; 95% confidence interval [CI], 0.155-0.798) and lower levels of self-disclosure (OR, 0.402; 95% CI, 0.186-0.868). CONCLUSION: There was relatively low concordance between patients' reports and caregivers' perceptions of psychological distress. Family caregivers tended to underestimate patients' psychological distress. A comorbid condition and lower levels of self-disclosure contributed to this bias. IMPACT: Having an awareness of the incongruence between patient and caregiver may help healthcare providers better interpret caregiver assessments. Healthcare providers should reinforce patient-caregiver dyadic psychosocial education to improve concordance. More psychological care and substantial emotional support should be provided for Chinese breast cancer patients undergoing chemotherapy by family caregivers and healthcare providers.

Meaning-based coping, chronic conditions and quality of life in advanced cancer & caregiving.

OBJECTIVE: This study examined the relationship between the number of co-existing health problems (patient comorbidities and caregiver chronic conditions) and quality of life (QOL) among patients with advanced cancer and their caregivers and assessed the mediating and moderating role of meaning-based coping on that relationship. METHODS: Data came from patients with advanced cancers (breast, colorectal, lung, and prostate) and their family caregivers (N = 484 dyads). Study hypotheses were examined with structural equation modeling using the actor-partner interdependence mediation model. Bootstrapping and model constraints were used to test indirect effects suggested by the mediation models. An interaction term was added to the standard actor-partner interdependence model to test for moderation effects. RESULTS: More patient comorbidities were associated with lower patient QOL. More caregiver chronic conditions were associated with lower patient and caregiver QOL. Patient comorbidities and caregiver chronic conditions had a negative influence on caregiver meaning-based coping but no significant influence on patient meaning based coping. Caregiver meaning-based coping mediated relationships between patient comorbidities and caregiver health conditions and patient and caregiver QOL. No significant moderating effects were observed. CONCLUSIONS: Despite the severity of advanced cancer for patients and caregivers, the co-existing health problems of one member of the dyad have the potential to directly or indirectly affect the wellbeing of the other. Future research should consider how the number of patient comorbidities and caregiver chronic conditions, as well as the ability of patients and caregivers to manage those conditions, influences their meaning-based coping and wellbeing. Copyright © 2016 John Wiley & Sons, Ltd.

Protocol of a dyadic sleep intervention for adult patients with cancer and their sleep-partner caregivers.

Background: Sleep disturbance is common and problematic among both patients with cancer and their sleep partner caregivers. Although 70% of the general adult population sleep in the same bed with a significant other, as do adult cancer patients and their spousal/partner caregivers, and one's sleep affect the partner's sleep, existing psychobehavioral interventions have targeted patients' and caregivers' sleep problems independently. Methods: We developed a new sleep intervention, My Sleep Our Sleep (MSOS), for both adult patients with cancer and their sleep-partner caregivers together. This protocol is to test the feasibility and acceptability as well as to provide preliminary efficacy of the MSOS intervention, which is a dyadic intervention designed to reduce sleep disturbance and improving sleep quality of both adult cancer patients and their sleep-partner caregivers (dyads). The intervention will be delivered weekly for 4 weeks. Questionnaire and daily sleep logs will be collected at baseline (T1) and one-week after conclusion of the intervention (T2). Satisfaction with the intervention will be assessed weekly for 4 weeks. Results: We estimate 43 dyads be enrolled (43 patients and 43 sleep-partner caregivers). We expect >75% of eligible and screened dyads will enroll within the enrollment period, >80% of enrolled dyads will complete the intervention, and >80% of participants will report satisfaction across all acceptability measures. We also expect MSOS will reveal a small-to-medium effect on sleep efficiency (primary outcome), overall sleep disturbance, subjective sleep quality, and insomnia severity (secondary outcomes). Conclusions: Results will inform the feasibility and acceptability of conducting a dyadic sleep intervention, and provide preliminary efficacy data to guide further refinement of the intervention content and procedure for adult patients with cancer and their sleep-partner caregivers. Trial registration: NCT04712604 Clinicaltrials.gov.

A thematic analysis of patients' and their informal caregivers' gendered experiences in traumatic brain injury.

PURPOSE: Research shows that patients' perceptions of themselves and others, in addition to their understanding of the concept of gender, changes after traumatic brain injury (TBI). Little is known about gendered experiences in TBI and care delivery. This study aims to explore perceptions of gender through life experiences and interactions between adult patients with TBI and their informal caregivers. MATERIALS AND METHODS: Seven patients with mild and moderate-severe TBI and eight informal caregivers were interviewed. Transcripts were coded and analysed according to Braun and Clarke's thematic analysis. The Consolidated Criteria for Reporting Qualitative Research guidelines were followed in reporting results. RESULTS: The participants described a transformation of their understanding and experiences of gender following the TBI event. Three themes were identified: (1) Gender designations of "man" and "woman";( 2) Post-injury performativity of gender; and (3) Gender in giving and receiving care. CONCLUSIONS: The findings emphasize the importance of raising awareness among researchers and practitioners on gender as a transformative process for patients with TBI and informal caregivers after the injury. The diversity of patient-caregiver experiences and critical needs based on gender call for intervention approaches that mitigate gender disparities in giving and receiving care. Implications for RehabilitationHistorically, rehabilitation of persons with traumatic brain injury has targeted physical and cognitive impairments, with little attention to their gendered demands in the lived environment.Gender prevails in the lived experiences of persons with traumatic brain injury, and their informal caregivers, and in giving and receiving quality care.A major challenge for clinicians is identifying harmful gendered roles, norms, and relations and the affective/behavioral problems they produce to alleviate enduring distress and reduce disability.Rehabilitation interventions focusing on flexible and adaptive responses to gendered demands in the lived environment of persons with traumatic brain injury are timely.

Applying Apriori algorithm to explore long-term care services usage status-Variables based on the combination of patients with dementia and their caregivers.

Purpose: The aim of this study was to identify the combination of patients with dementia and their caregivers' characteristics associated with long-term care (LTC) services usage. Patients and methods: A cross-sectional study was conducted with 475 patients with mild, moderate, and severe dementia at Changhua Christian Hospital, Taiwan. Eleven types of variables from patients with dementia, nine types of variables from patients' caregivers, and 15 types of LTC services were used for this study. The Apriori algorithm was employed to identify the attributes from the patients and their caregivers who used a particular LTC service from a comprehensive viewpoint. Results: A total of 75 rules were generated by the Apriori algorithm with support of 2%, confidence of 80%, and lift >1. Among these rules, 25 rules belonged to home personal care services which were summarized further into four general rules for home personal care services. On the other hand, 50 rules belonged to assistive devices that were summarized further into 21 general rules based on their similarities. Patient's walking ability, patient's emotional liability, unemployed or retired caregivers, caregivers' feelings with either helplessness or hopelessness, and caregivers who cared for patients with dementia solely were found to be the critical variables to use home personal care services. In contrast, patient's walking ability, age, and severity as well as caregivers' age, mood, marital status, caregiving burden, and the patient being cared for mainly by a foreign care helper were found to be the critical variables to use assistive devices. Conclusion: This study showed preliminary results on the LTC service usage from patients with dementia and their caregivers residing in the community. Understanding the patient-caregiver dyad's profile leads the service providers, policymakers, and the referral team to tailor service provisions better to meet the needs and identify the potential target groups. The findings in this study serve as references to reduce caregivers' burden as well as to improve the quality of care for patients with dementia.

Efficacy of a dyadic intervention to improve communication between patients with cancer and their caregivers: A randomized pilot trial.

OBJECTIVE: Cancer-related communication is critical for patients' and caregivers' adaptation to illness. This randomized pilot study was conducted to test the feasibility, acceptability, and efficacy of a specific dyadic intervention to improve communication. METHODS: A four weekly-session intervention was developed to reinforce cancer-related patient-caregiver communication. Patients receiving treatment for any diagnosed cancer, and their caregivers, were recruited from two oncology clinics in Belgium. Sixty-four patient-caregiver dyads were assigned randomly to intervention and waitlist groups. Cancer-related dyadic communication, dyadic coping and emotional distress were assessed at baseline and post-intervention. RESULTS: The intervention attrition rate was 6 %. Linear mixed models were performed on 60 dyads. Significant two-way group × time interaction indicated improvement in participants' cancer-related dyadic communication frequency (ß = -1.30; SE = 0.31; p = .004), self-efficacy (ß = -10.03; SE = 3.90; p = .011) and dyadic coping (ß = -5.93; SE = 2.73; p = .046) after the intervention. CONCLUSION: These results indicate that the brief dyadic communication intervention is feasible and acceptable, and show preliminary evidence of efficacy. PRACTICE IMPLICATIONS: Encouraging patients and caregivers to discuss personal cancer-related concerns may improve their ability to cope with the illness together.

Needs of people with psychosis and their caregivers: «In their own voice¼. / Necesidades de las personas con psicosis y sus cuidadores: «en voz propia¼.

INTRODUCTION: Improvement in mental health care services is going through a greater involvement of people with mental disorders and their families. Our aim was to directly ask the opinion of people with psychosis and their caregivers about their needs and preference for treatment. METHODS: The authors designed an anonymous survey containing 9questions about their needs or suggestions on different areas such as personal and social dimensions of the illness, medical and psychotherapeutic treatment, psychosocial rehabilitation or help received from professionals. A pilot study was done to ensure the adequacy and intelligibility of the form. The final survey consisted of 5.205 completed surveys were collected, corresponding to 2.840 people diagnosed with psychotic disorder (including schizophrenia) and 1.341 caregivers, from all over Spain. RESULTS: The most important need as assessed by participants was emotional support (friendships, partner, family). 91% of patients indicated that this need was «quite¼ or «very important¼. Both people with schizophrenia and caregivers perceived their health to be poor (3.29 and 3.30 respectively on an ascending scale from 0 to 5). 43% of males and 39% of females reported having «little¼ or «no¼ freedom to make important life decisions. For 35% of participants the psychotherapeutic treatment was instituted too late. Work was «important¼ or «very important¼ for 74% of respondents, especially for young people. The most valued anti-stigma initiative was to increase investments in schizophrenia healthcare plans. CONCLUSIONS: Designers of mental health care services should consider the importance given by people diagnosed with psychosis to emotional needs, perception of freedom to make choices and early intervention.

Education, Training, and Mentorship of Caregivers of Canadians Experiencing a Life-Limiting Illness.

BACKGROUND: Research suggests that caregiver preparedness is essential to minimizing the negative impacts of caregiving. Not being prepared is associated with fear, anxiety, stress, and feelings of insufficiency/uncertainty specific to the caregiver role. OBJECTIVE: To determine what resources are required to ensure adequate education, training, and mentorship for caregivers of Canadians experiencing a life-limiting illness. DESIGN: Informed by the Ispos Reid survey, the methods for this article involved a rapid literature review that addressed caregiver experiences, needs and issues as they related to health, quality of life, and well-being. RESULTS: Given the burden of care, caregiver education, training, and mentorship are suggested to be best met through the palliative navigator model, wherein the patient-caregiver dyad is recognized as an integrated unit of care. CONCLUSIONS: The palliative navigator approach is a key role in the education, training, and mentorship of caregivers.