Non-spouse companions accompanying older adults to medical visits: a qualitative analysis

TL;DR

In six focus groups with 40 non-spouse medical visit companions (MVCs) from Baltimore Baptist churches, companions described positive experiences but extensive roles before, during, and after visits, including transport, information exchange, advocacy, care coordination, and follow-up. The study highlights challenges such as scheduling, transportation, communication, and care coordination, and suggests untapped potential for supporting non-spouse MVCs.

Key findings

• The 40 non-spouse MVCs were 60% African American, 37.5% White, and 2.5% Asian; mean MVC age was 50.1 years (SD 11.5), and mean patient age was 77.7 years (SD 20.1). Many MVCs (52.5%) had accompanied more than one older adult in the previous year, with 5 participants accompanying four or more people; 90.0% also provided informal caregiving help with ADLs/IADLs.
• Companions described roles extending far beyond the visit itself: before the visit (transport, gathering medication lists/insurance cards/questions, encouraging attendance), during the visit (exchanging information, advocacy, seeking clarification, managing short consultation time), and after the visit (disseminating information, providing support, arranging follow-up appointments/tests, and sometimes perceiving misdiagnosis or delayed diagnosis).
• Most companions viewed the experience positively and were willing to continue, but cultural differences emerged: African American focus groups more often expressed gratitude and access to support networks, while white participants more frequently used words like “hard” and “burden” and reported frustration or dissatisfaction after visits.
• Thematic saturation was largely achieved after four focus groups, with one new code in the fifth group and none in the sixth; inter-rater agreement ranged from 85.3% to 94.1%.

Methods

• Qualitative study using six focus groups with 40 non-spouse MVCs recruited through Baptist churches in Baltimore, Maryland, conducted between November 2015 and February 2016; groups lasted 60–90 minutes and were led by two facilitators.
• A Community Based Participatory Research approach was used with The THREAD Institute; thematic content analysis involved four coders, a codebook, coding pairs with academic/community and Caucasian/African American representation, and resolution of discrepancies through discussion.
• Participants completed a demographic questionnaire covering gender, race, age, education, income, employment, relationship to the patient, patient medical condition, and ADL/IADL assistance.

Limitations

• The paper states potential bias in self-reported focus group data, limited to contributions of those who voiced their ideas and experiences; the church-based setting may limit generalizability and may have discouraged some participants from reporting negative feelings about relatives.
• The paper states that expectations prior to the visit were not explored, leaving the possibility that perceived cultural diversity was merely a difference in expectations about roles.
• Evident from the text: the sample came from six Baptist churches in Baltimore, was 92.5% female, and included mostly family companions (only three non-family volunteers), with no patient or provider perspectives; findings may not transfer to other settings or populations.