METHOD: Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirty-eight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Care-related Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated.
RESULTS: Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews.
CONCLUSION: Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP.
METHODS: A total of 236 breast cancer patients from China completed the Chinese Version of the Posttraumatic Stress Disorder Symptom Scale (PSS), the Chinese version of the Patient Health Questionnaire (PHQ-9), the Chinese version of the General Anxiety Symptoms Scale (GAD-7). In addition, caregivers of these breast cancer patients were surveyed by the Caregiver Self-Assessment Questionnaire (CSAQ).
RESULTS: Structural equation model showed that our model fitted well [χ2 /df = 1.966, TLI = 0.959, CFI = 0.994, RMSEA (90% CI) = 0.065 (0-0.12)] and revealed that anxiety, but not depression, mediated the relationship between PTSS in breast cancer patients and caregiver burden.
CONCLUSION: The level of PTSS was positively correlated with anxiety and depression in breast cancer patients, and the level of anxiety and depression was positively related to caregiver burden. The PTSS of patients positively predicted caregiver burden and this relationship appears to be mediated by the patient's anxiety.
METHODS: Purposive sampling was used to select the 73 caregivers of children with ALL who participated in this cross-sectional study. The Post-traumatic Stress Disorder Checklist for DSM-5 (PCL-5), Beck Depression Inventory (BDI), and Beck Anxiety Inventory (BAI) were used to measure psychological distress.
RESULT: There was a low prevalence (11%) of post-traumatic stress disorder (PTSD) among the participants. Although all the criteria for PTSD were not met, a few post-traumatic symptoms remained, suggesting that PTSS was likely present. Most of the participants reported minimal symptoms of depression (79.5%) and anxiety (65.8%). Anxiety, depression, and ethnicity predicted the PTSS scores (R2 = .77, p =.000). Subsequently, depression predicted the PTSS scores (R2 = 0.42, p =0.000). Participants of 'Other' or 'Indigenous' ethnicity had lower PTSS scores and higher anxiety scores (R2 = 0.75, p =0.000) than participants of Malay ethnicity.
CONCLUSION: The caregivers of children with ALL experience post-traumatic stress symptoms (PTSS), depression, and anxiety. These variables co-exist and may have different trajectories in different ethnic groups. Therefore, healthcare providers should take ethnicity and psychological distress into consideration when providing paediatric oncology treatment and care.
METHODS AND ANALYSIS: This two-phase sequential explanatory mixed-methods design, incorporating a quantitative design (phase I) and a qualitative study (phase II), is to be conducted in 4 government hospitals and 10 other non-governmental organisations or private dialysis centres within Klang Valley, Malaysia. A cross-sectional survey (phase I) will include 236 patient-caregiver dyads, while focus group discussions (phase II) will include 30 participants. The participants for both phases will be recruited purposively. Descriptive statistics, independent sample t-tests and multiple regression analysis will be used for analyses in phase I, and thematic analysis will be used in phase II.
ETHICS AND DISSEMINATION: Approval for the study has been obtained from the National Medical Research and Ethics Committee (MREC) (NMRR-21-1012-59714) and the Research Ethics Committee of Hospital Canselor Tuanku Muhriz UKM (UKM PPI/111/8/JEP-2021-078) and University of Malaya Medical Centre (MREC ID NO: 2 02 178-10346). Informed consent of the participants will be obtained beforehand, and no personal identifiers will be obtained from the participants to protect their anonymity. The findings will be published in peer-reviewed scientific journals and presented at national or international conferences with minimal anonymised data.
METHOD: A cross-sectional survey of two groups of participants was conducted using the Revised Patients' Attitudes Towards Deprescribing questionnaire. Descriptive results were reported for participants' characteristics and questionnaire responses from four factors (belief in medication inappropriateness, medication burden, concerns about stopping, and involvement) and two global questions. Correlation between participant characteristics and their responses was analyzed.
RESULTS: A total of 1,057 (615 older adults; 442 caregivers) participants were recruited from 10 institutions in Singapore. In which 511 (83.0%) older adults and 385 (87.1%) caregivers reported that they would be willing to stop one or more of their medications if their doctor said it was possible, especially among older adults recruited from acute-care hospitals (85.3%) compared with older adults in community pharmacies (73.6%). Individuals who take more than five medications and those with higher education were correlated with greater agreement in inappropriateness and involvement, respectively.
CONCLUSIONS: Clinicians should consider discussing deprescribing with older adults and caregivers in their regular clinical practice, especially when polypharmacy is present. Further research is needed into how to engage older adults and caregivers in shared decision making based on their attitudes toward deprescribing.
OBJECTIVES & METHODOLOGY: This systematic narrative review examines articles published from 1990 to 2017, generated from Ovid, MEDLINE, CINAHL, and PubMed. The search was also supplemented by an examination of reference lists for related articles via Scopus. We included 105 articles.
FINDINGS: We found that the type of unmet needs in stroke survivors and the contributing factors were substantially different from their caregivers. The unmet needs in stroke survivors ranged from health-related needs to re-integration into the community; while the unmet needs in stroke caregivers ranged from information needs to support in caring for the stroke survivors and caring for themselves. Additionally, the unmet needs in both groups were associated with different factors.
CONCLUSION: More research is required to understand the unmet needs of stroke survivors and stroke caregivers to improve the overall post-stroke care services.
DESIGN AND METHODS: One hundred fifty-five adult ASD caregivers completed the Malay version of Brief COPE, the Patient Health Questionnaire-9, and the Balanced Index of PM.
FINDINGS: Direct paths between dysfunctional coping style and depressive symptoms, between insight and depressive symptoms, and between dysfunctional coping style and all PM variables (insight and interest) were obtained. Multiple regression analyses revealed that insight, but not interest, significantly mediates the relationship between dysfunctional coping and depressive symptoms.
PRACTICAL IMPLICATIONS: PM can be enhanced via psychological interventions.
METHODS: This was a cross-sectional study of 385 caregivers of older people who attended a community clinic in Malaysia. Convenience sampling was employed during the study period on caregivers who were aged ≥ 21 years and provided ≥ 4 hours of unpaid support per week. Participants were asked to complete a self-administered questionnaire, which included the Carers of Older People in Europe (COPE) index and the EASYCare Standard 2010 independence score. The COPE index was used to assess the impact of caregiving. A highly burdened caregiver was defined as one whose scores for all three COPE subscales were positive for burden. Care recipients' independence was assessed using the independence score of the EASYCare Standard 2010 questionnaire. Multiple logistic regression was used to determine the factors associated with caregiver burden.
RESULTS: 73 (19.0%) caregivers were burdened, of whom two were highly burdened. Caregivers' median scores on the positive value, negative impact and quality of support scales were 13.0, 9.0 and 12.0, respectively. Care recipients' median independence score was 18.0. Ethnicity and education levels were found to be associated with caregiver burden.
CONCLUSION: Most caregivers gained satisfaction and felt supported in caregiving. Ethnicity and education level were associated with a caregiver being burdened.
METHODS: A total of 323 dyads of GI cancer patients and their caregivers completed the Medical Outcomes Study 12-item Short Form (MOS SF-12) questionnaire to measure their HRQOL during face-to-face interviews. The analyses were performed using SF-12 scoring software to compute PCS and MCS scores (HRQOL parameters). The independent t test, one-way ANOVA, and the Pearson correlation test were conducted to determine the demographic factors related to the HRQOL of the dyads.
RESULTS: The caregivers had higher scores in all domains for the SF-12 than the patients. There were significant differences found in the MCS scores of the patients according to ethnicity, origin of cancer, duration of cancer, and surgery. None of these factors had a significant relationship with the caregivers' HRQOL.
CONCLUSION: Caregivers had better HRQOL than cancer patients. Early intervention for cancer patients in the form of counselling and personalised pain management may enhance the HRQOL of patients.
METHOD: This is a cross-sectional, survey-based study in which participants responded to questionnairesregarding perceived burden (ZBI), quality of life (IEQoL), psychological distress (DASS-21), family functioning (FAD) and perceived social support (MSPSS). Additional measures include socio-demographics and clinical characteristics of the care-recipient.
RESULTS: A total of 111 caregivers participated, of whom 72.1% were females, 55% parents, 59.5% Chinese, 51.4% unemployed and 46.0% with tertiary education.Approximately half (42.3%) reported mild-to-moderate levels of burden (mean ZBI score 29.93, SD 16.09).Furthermore, multiple regression analysisidentified10 predictors of caregiver burden, namely family functioning, weekly caregiving hours, number of caregivers per family, attitude towards epilepsy, family support, caregivers' gender, personal income and as well as care-recipients' age of onset, seizure frequency and ADL dependency (F(10, 85) = 11.37, p
RESEARCH DESIGN AND METHODS: A search strategy was applied in six databases and grey literature. Inclusion criteria were primary observational studies on informal caregiving for care recipients aged 60 years and above, in the English language. Informal caregivers were those not formally hired and multimorbidity referred to presence of at least two health conditions. From a total of 2,101 titles, 230 abstracts were screened, and 19 articles were included. Quality assessment was conducted with application of the Newcastle-Ottawa-Scale.
RESULTS: Health-related and caregiving-related outcomes have been assessed for informal caregivers of older adults with multimorbidity. Caregiver subjective burden was most commonly evaluated and often reported to be low to moderate. In association with care recipient multimorbidity, caregiver burden, quality of life, and perceived difficulty in assisting the older adults were examined in 14 of the studies with mixed results. Studies were heterogeneous, with nonuniform definitions of informal caregivers and multimorbidity as well as measurement tools.
DISCUSSION AND IMPLICATIONS: This narrative review found that caring for older adults with multimorbidity impacts caregivers, although overall evidence is not conclusive. Despite caregiving-related outcomes being most commonly assessed among the caregivers, particularly subjective burden, findings suggest that it is worthwhile to examine other outcomes to enrich the evidence base.
METHOD: A total of 20 individuals with PD and their caregivers completed the Parkinson's disease Questionnaire-39 (PDQ-39) scale and the Life Satisfaction Scale (LSS). In addition, PD participants were asked to complete the Self-Rated Speech Scale (SRSS) to rate their speech intelligibility.
RESULT: PD participants reported significantly lower QOL scores than their caregivers. However, there was no difference between the two groups on the social support and stigma dimensions, indicating that both groups reported similar levels of social support and stigma in their daily lives. A moderate significant correlation was observed between the LSS and PDQ-39 scores in the PD group, suggesting that life satisfaction could affect their QOL. Moreover, moderate correlation was found between the LSS and SRSS, showing that participants self-reported speech intelligibility has an impact on their life satisfaction.
CONCLUSION: In general, individuals with PD showed lower QOL than their caregivers. Given that the SRSS, LSS and QOL are moderately correlated, identifying patients' perception on their speech intelligibility and life satisfaction could help clinicians to better understand their patients' needs when delivering speech therapy services.
METHODS: This cross-sectional study was conducted among 202 caregivers to PWD in home-based settings. Recruited caregivers were administered questionnaires regarding BPSD which was measured using Neuropsychiatric Inventory-Questionnaire (NPI-Q), caregiver burden using Zarit Burden Interview (ZBI), Brief COPE for coping strategies and Big-Five Inventory which measured personality traits.
RESULTS: Majority of the caregivers were female (71.3%), aged 50 and above (55%), single (46%), married (43.6%), working full time (45%) while the rest work part time (22.3%), unemployed (7.4%) and retiree (25.2%), and majority were parents (58.9%) and spouse (18.3%). The duration of caregiving was less than a year (33.7%) while the rest are more than a year. Results demonstrated that the most frequent types of BPSD exhibited by PWD was irritability, followed by apathy and agitation. All of the types of BPSD showed to be significantly correlated to caregiver burden except for anxiety, elation and appetite. Of personality traits, only conscientiousness was found to mediate the relationship between BPSD and caregiver burden (p
METHODS: This cross-sectional study aimed to determine the factors associated with caregivers' satisfaction with different levels of health care services in managing children with ASD in Kelantan. The satisfaction scores of 227 main caregivers of confirmed ASD children were assessed with a modified Parent Satisfaction Scale (PSS) questionnaire.
RESULTS: The analysis showed that caregivers who waited longer for a doctor's consultation in primary care had a reduced PSS score, whereas caregivers who were satisfied with the waiting time in primary care had higher PSS scores. At the secondary care level, caregivers who possessed at least a diploma had reduced PSS scores, whereas caregivers who were satisfied with both doctors' consultation times and occupational therapy appointments had higher PSS scores. At the tertiary care level, caregivers with an underlying medical problem and who had children undergoing occupational therapy for two months or more had reduced PSS scores. Nevertheless, the analysis showed that caregivers who were concerned with their children's sleeping problems, who had been informed about parental support, who were satisfied with speech and occupational therapy appointments, who were satisfied with waiting times at tertiary care clinics, and who were satisfied with their doctor's knowledge and experience had higher PSS scores.
CONCLUSIONS: This study elucidated the importance of understanding caregivers' satisfaction in attaining care for their ASD children and highlighted the need to promote factors that would increase caregivers' satisfaction with current ASD services.