JMIR Publications

ABSTRACT

Background:

Health and social care systems were designed to be used primarily by people with single and acute diseases. However, a growing number of older adults are diagnosed with multiple long-term conditions (LTCs). The process of navigating the intricacies of health and social care systems to receive appropriate care presents significant challenges for older people living with multiple LTCs, which in turn can negatively influence their well-being and quality of life.

Objective:

The long-term goal of this work is to design technology to assist people with LTCs in navigating health and social care systems. To do so, we must first understand how older people living with LTCs currently engage with and navigate their care networks. No published research describes and analyses the structure of formal and informal care networks of older adults with multiple LTCs, the frequency of interactions with each type of care service, and the problems that typically arise in these interactions.

Methods:

We conducted a mixed-methods study and recruited 62 participants aged ≥55 years who were living in England, had ≥2 LTCs, and had completed a social network analysis questionnaire. Semistructured interviews were conducted with roughly a 10% subsample of the questionnaire sample: 4 women and 3 men. On average, interviewees aged 70 years and had 4 LTCs.

Results:

Personal care networks were complex and adapted to each individual. The task of building and subsequently navigating one’s personal care network rested mainly on patients’ shoulders. It was frequently the patients’ task to bridge and connect the different parts of the system. The major factor leading to a satisfying navigation experience was found to be patients’ assertive, determined, and proactive approaches. Furthermore, smooth communication and interaction between different parts of the care system led to more satisfying navigation experiences.

Conclusions:

Technology to support care navigation for older adults with multiple LTCs needs to support patients in managing complex health and social care systems by effectively integrating the management of multiple conditions and facilitating communication among multiple stakeholders, while also offering flexibility to adapt to individual situations. Quality of care seems to be dependent on the determination and ability of patients. Those with less determination and fewer organization skills experience worse care. Thus, technology must aim to fulfill these coordination functions to ensure care is equitable across those who need it.