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.
MATERIALS: Focus group and individual interviews with patients, carers, healthcare staff, religious authorities, traditional healers and community members.
DISCUSSION: Four stages of help seeking were identified: (1) noticing symptoms and initial labelling, (2) collective decision-making, (3) spiritual diagnoses and treatment and (4) psychiatric diagnosis and treatment.
CONCLUSION: Spiritual diagnoses have the advantage of being less stigmatising, giving meaning to symptoms, and were seen to offer hope of cure rather than just symptom control. Patients and carers need help to integrate different explanatory models into a meaningful whole.
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.
SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO 2015:CRD42015026602.
METHODS: A systematic search for studies concerning the perception of financial burden among cancer patients and their families was conducted. Several electronic resources such as Medline, Elsevier (Science Direct), Web of Science, Embase, PubMed, CINAHL and Scopus (SciVerse) were searched. Additionally, manual search through indices citation was also thoroughly utilized. The main outcome of interest was the prevalence of perceived financial hardship among cancer patients and their families. Studies reported only the cost of cancer treatment and qualitative studies were excluded. Our search was limited to articles that were published from 2003 to 2013.
RESULT: Ten studies were included in this review and with a majority originating from high-income countries. The prevalence of the financial burden perception was reported between 14.8 and 78.8 %. The most frequent and significant risk factor reported associated with the perception of financial difficulty was the households with low income. Discontinuation of treatment and poverty were conversely the important consequences of financial burden in cancer patients and their families.
CONCLUSION: Evidently, cancer is a long-term illness that requires a high financial cost, and a significant number of cancer patients and families struggle with financial difficulty. Identifying such groups with a high risk of facing financial difficulty is a crucial measure to ensure safety nets are readily available for these targeted population.