METHODS AND ANALYSIS: We will systematically search 4 databases: MEDLINE, EMBASE, PsycINFO and CINAHL for published qualitative evidence on the needs and experiences of stroke survivors and informal carers of postacute care delivered by primary care and community health services. Additional searches of reference lists and citation indices will be conducted. The quality of articles will be assessed by 2 independent reviewers using a Critical Appraisal Skills Programme (CASP) checklist. Disagreements will be resolved through discussion or third party adjudication. Meta-ethnography will be used to synthesise the literature based on first-order, second-order and third-order constructs. We will construct a theoretical model of stroke survivors' and informal carers' experiences of primary care and community health services.

METHODS: A cross-sectional study was conducted among 110 caregivers of children with ASD aged between 2 and 17 years old that received treatment at two tertiary care centres in Kelantan. Permission to use the original version of the PSS questionnaire was obtained. The original English version of the PSS was translated into a Malay version following the 10 steps proposed by an established guideline. Pre-testing of the PSS was carried out with 30 caregivers before confirmatory factor analysis (CFA) was established using 110 caregivers. They were asked to assess their understanding of the questionnaire. The one-dimensional questionnaire consists of 11 items, including staff attitudes, availability of staff, supportiveness, and helpfulness. The 5-point Likert scale provided ratings from 1 (strongly disagree) to 5 (strongly agree). Confirmatory factor analysis was performed using a robust maximum likelihood estimator.

RESULTS: The analysis showed model fit data with good reliability.

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.

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.

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.

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.

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.

DESIGN: Systematic review and meta-ethnography.

DATA SOURCES: Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).

ELIGIBILITY CRITERIA: Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services.

DATA SYNTHESIS: A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria.

RESULTS: 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke.

LIMITATIONS: Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems.

CONCLUSIONS: Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services.

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.