Filling the gaps in knowledge

Changes in society (e.g. ageing population and digitalisation) and concomitant challenges in the care landscape (e.g. increased demands and changed needs) require us to rethink the delivery of health and social care (Rechel et al., 2009; The International Longevity Centre, 2012). The following two gaps were identified in health and social care literature and formed the foundation for this study.

Firstly, health and social care systems were initially not designed to support the growing number of people living with multimorbidity (Ravenscroft, 2010). A focus on coordination and continuity of care emerged together with a drive towards increasingly specialised services. To address this, single disease settings benefitted from the use of care navigators who brought services together around the patient (Albert, 2012). However, an increasing number of people suffer from more than one (long-term) condition, where the ‘pathway model(s)’ may be mutually exclusive; whilst delivering ‘best-practice’ care on one condition may well result in sub-optimal care for the other complex LTCs (Boeckxstaens, 2014). Although the patient-centred care model demands care to be organised around the patient, in practice patients often have to move within, between and beyond different parts of the care system to meet their complex needs. Little is known about how older people with multimorbidity currently accomplish this; how they find the ‘right’ care at the ‘right’ time in the ‘right’ place for the ‘right’ problem (care navigation); how the appropriate providers and services are selected in relation to patients’

LTCs; or if care navigators would be able to form a bridge in the same way as in single disease settings.

Secondly, the patient or person-centred care model is believed to capture the nature of current care problems better than the disease-centred model, and studies are exploring technological applications to support this model of care (Czaja, 2015; Marchibroda, 2015). The increasing number of older people has a significant impact on health and social care systems globally (Khosravi and Ghapanchi, 2016). A rise in care costs and needs is occurring simultaneously with a growing shortage of clinicians and caregivers (Marchibroda, 2015). The majority of care for patients with multimorbidity is provided in general practice. The current pressure general practice is facing is likely to continue as the ageing population grows (Baird et al., 2016; Clay and Stern, 2015). Research has shown that ICT can provide valuable opportunities for older people, for example by supporting age-related needs (Goodman et al., 2009), whilst also reducing the cost of care (Khosravi and Ghapanchi, 2016).

In this context, ICT holds promise to help our society, and in particular its older members, face these challenges. Research has widely discussed the potential of ICT to enhance independence and improve quality of life of adults as they age (Czaja, 2015). An overview of these benefits can be found in Appendix 2. However, the results of technology to support care in older people are ambiguous. Whether ICT can support this partnership model of care (i.e. patient-centred care) in a meaningful, efficient and cost-effective way depends on several factors, including how well those electronic support tools are designed (Damant and Knapp, 2015). Currently there are no insights into the design needs for, nor the benefits of, ICT on navigation through the care system.

1.2.3.1 Aims and objectives of the study

To address these current gaps, this doctoral thesis aims to explore the feasibility, acceptability, and those requirements that could identify the design of ICT interventions to support older adults with multimorbidity to independently navigate the care system. Three overarching objectives were identified to:

1 Synthesise the literature on care navigation among older people with multimorbidity from a patient perspective (see Chapter Three).

2 Analyse and visualise the structures of and interactions in the personal care network (PCN) of older people with multimorbidity and gain an understanding of their experiences of navigating their PCNs (see Chapter Four).

3 Identify elements for improvement in care navigation among older people with multimorbidity and deliver design requirements for the development of an ICT tool to support this population in their navigation through the care network (see Chapter Five).

The breadth of these objectives was recognised and Chapter Two specifies the methodological considerations that were made in relation to each objective. To structure this doctoral research further, each objective was linked to further corresponding research questions that could help address each objective (see Table 1). Section 2.4.3 details the methods used to answer the research questions linked the objectives stated above.

Table 1: Aims and objectives of the study

AIMS AND OBJECTIVES RESEARCH QUESTIONS FINDINGS

Synthesise the literature on care navigation among older people with multimorbidity from a patient perspective.

What does the literature regarding care network/system navigation in the setting of older people with multiple morbidities tell us?

Chapter Three

Analyse and visualise the structures of and interactions in the personal care network (PCN) of older people with multimorbidity and gain an understanding of their experiences of navigating their PCNs.

What does the care network of older people with multimorbidity look like from a patients’ perspective?

a) Which actors are involved in the PCN of older people with multimorbidity and from which care domain (social care in the community, health care in the community, health care in the hospital and informal care)?

b) Does this structure of the PCN differ according to the number of LTCs, age and sex?

c) Why are these actors present in the PCN of older people with multimorbidity?

AIMS AND OBJECTIVES RESEARCH QUESTIONS FINDINGS