Factors affecting caregiver burden of terminally ill adults in the home setting - A systematic review

Background: Terminally ill people have complex physical and psychological needs. As a result, their caregivers may experience high levels of burden, and some caregivers are unable to cope with the burden. Thus, it is important to determine the various factors that may influence caregiver burden, so that healthcare professionals may implement strategies to reduce caregiver burden. In this review, "caregiver burden" was expanded to include "caregiver stress" and "caregiver strain", as the two terms were related to caregiver burden.

The objective of this systematic review was to identify the factors that may influence caregiver burden of a terminally ill adult in the home setting.

Types of participants: This review considered adult participants (above age 18) who were the main caregivers of a terminally ill adult in the home setting, and providing care for the terminally ill person at the point of participation in the study.Types of intervention: There was no specific intervention of interest for the study.Types of outcomes: The focus of study was the factors that affected caregiver burden of the terminally ill person.Types of studies: Quantitative studies such as randomised controlled trials (RCTs), controlled clinical trials (CCTs), interrupted time series (ITSs), controlled before after designs (CBAs), observational design (cohort, case-control), and descriptive surveys were included in the study.

This review was limited to papers in English and Mandarin. A literature search from the inception of the database to October 2010 was conducted using major electronic databases. The databases used were CINAHL, MEDLINE, PsycINFO (Ovid), Scopus, SpringerLink, ScienceDirect, Web of Science, Mosby's Nursing Consult, Mednar: Deep web medical search, Proquest Dissertations and Theses and China Journal Net.Methodological quality: The quality of the potential studies was assessed by two independent reviewers using the critical appraisal checklists for descriptive/case studies from the JBI-MAStARI (Joanna Briggs Institute-Meta Analysis of Statistics Assessment and Review Instrument).

Quantitative data were extracted from included papers using standardised data extraction tools from the JBI-MAStARI.

Findings were presented in narrative form, as statistical pooling was not possible.

Seven studies were included in the review. All the studies used a cross-sectional descriptive survey for the collection of data. Four main factors that influenced caregivers' perception of caregiving burden were identified: 1. Caregiver characteristics, 2. Patient characteristics, 3. Social support, and 4. Caregivers' personal protective resources.

Caregiver characteristics, patient characteristics, social support, and attitude of caregiver towards the caregiving situation, were found to influence caregivers' perceived caregiving burden.

Additional support is required for caregivers who are employed, known to have financial difficulties, caring for patient indicating symptom distress, and caring for a patient at the terminal stage (Level III).

Future studies may attempt to develop a framework to identify factors that impact on caregiver burden. More studies on caregiver burden in males, caregiver burden of patients who were at the terminal stages of the various chronic illnesses should be explored.