Keywords: Informal caregivers Caregiving experiences Caregiver Burden Primary Health Care

Background:

Informal home care is becoming increasingly important due to limitations in formal home nursing resources. Informal caregivers often remain “hidden patients,” experiencing both burden and fulfilment. Existing research has largely focused on specific caregiver groups, resulting in limited population-level evidence relevant to general practice. This study addresses this gap by using nationally representative data.

Research questions:

What experiences do informal home caregivers report, and how can these inform routine assessment and support of caregivers in primary care?

Method:

A cross-sectional, nationally representative household survey was conducted among Lithuanian residents aged ≥18 years (N=1000). Data were collected through face-to-face interviews using an original questionnaire. Informal caregivers were identified and asked to select up to five positive and five negative caregiving experiences from predefined lists (14 items each), developed from prior qualitative research with informal caregivers. Descriptive statistics, subgroup comparisons, and Spearman’s correlation analysis were performed.

Results:

A total of 168 respondents (16.8%) were identified as informal caregivers; 60.1% were women, with a mean age of 54.25 ± 14.70 years. Caregivers reported significantly more positive than negative experiences (mean 3.12 vs. 2.42; p < .001), particularly among women and single individuals. Positive and negative experience counts were moderately correlated (Spearman’s ρ = .349; p < .001), indicating the coexistence of reward and burden in caregiving. The most frequently reported positive experiences were a sense of being needed (49.4%), repayment of a moral debt (33.3%), and strengthened relationships (32.7%). The most common negative experiences included lack of rest (32.1%), lack of personal time (28.0%), and reduced ability to leave the home (26.8%).

Conclusions:

Informal caregiving involves both positive experiences and significant burden. Primary care professionals are well placed to identify caregiver burden and unmet support needs. Including caregiver assessment in routine primary care can help improve caregiver wellbeing and patient outcomes.

Points for discussion:

What key elements should be considered when developing strategies in primary care to identify caregiver burden?

Should caregiver support interventions in primary care focus on reducing burden or strengthening positive caregiving experiences—or both?