A qualitative study of family members’ perspectives regarding decision-making for nursing home residents’ care

Abstract

Purpose We explored how family caregivers perceive decision-making regarding the care of nursing home residents. Methods This qualitative study used Flemming’s Gadamerian-based research method. In person semi-structured interviews about decision-making concerning residents’ care were conducted with 13 family members (nine women, four men) of residents of three Norwegian nursing homes. Findings The following themes emerged: Excessive focus on autonomy threatens resident wellbeing and safety. Resident wellbeing is the caregiver’s responsibility. Resident wellbeing serves as a guiding principle. Conclusions The family members of residents and the nursing home caregivers disagreed about the significance of upholding resident autonomy to respect residents’ dignity. The family members held that not all instances where residents refused care reflect autonomy situations as care refusal often does not reflect the resident's true values and standards but rather, stems from barriers that render necessary care actions difficult. In situations where residents refuse essential care or when the refusal does not align with the residents second-order values, the family members suggested that caregivers strive to understand the causes of refusal and seek non-coercive ways to navigate it. Hence, the family members seemed to endorse the use of soft paternalism in nursing homes to safeguard residents’ wellbeing and dignity.

Keywords

• qualitative research
• hermeneutical interpretation
• interview
• nursing homes
• family
• dignity
• paternalism
• autonomy
• refusal of care
• decision making