Authors:

Abstract

Introduction

Gippsland Primary Health Network (PHN) enlisted the Health Issues Centre (HIC) to engage with people aged over 65 years experiencing ‘declining capacity’ and ‘dependency’, to better understand their barriers to accessing health and social care services. The findings were needed to inform the Gippsland PHN health needs assessment.

Methods

HIC applied its Social Listening© methodology incorporating self-directed social media conversations, on-line open response surveys and face-to-face intercept conversations©. Facebook engagement (via a mediated conversation linked to an optional survey) was supplemented by in person and telephone interviews with people aged over 65 years, their adult children and health, social care and community professionals working with them.

Results

64 older people and 38 adult children of older people completed online surveys. Interviews were conducted with 23 older people and nine professionals.

Survey results identified major concerns for older people as loss of independence (41%) and physical (41%) and mental (37%) capacity, while carers were most concerned about their parent’s pain and suffering (66%), loss of physical capacity (63%), loss of mental capacity (60%) and loneliness (60%).

Key barriers to service access across data sources included; the importance of empathy and validation when interacting with service providers, poor communication of clinical information and access logistics such as waiting times, cost of services, travel times and limited access to digital options.

Discussion

The methodology enabled participants to determine the direction of inquiry and six stages of decline were identified that can be reinforced by health services failing to empathise and validate experiences of ageing. This can create a Spiral of Decline and Withdrawal.

The research identified critical intervention points for health and social service providers to intercept the decline. An essential component is the need to help older people feel valued and understood.

Conclusions

Health and social care providers have a critical role to play in intercepting the spiralling effect of decline and withdrawal from accessing health and social care services. It is important to seize the opportunities to express empathy that can restore consumer self-esteem and trust in the health system. With a service system based on strengthening consumer identity and validating experiences of ageing, significant gains could be made to reduce severe physical and mental health decline.

Lessons learned

Empathy and validation of older peoples’ experiences is essential for clinicians and service providers to restore consumer self-esteem and sense of identity.

Access logistics including cost, travel and waiting times are significant barriers to services for older people in rural areas.

Effective communication of clinical information is a foundation for good quality care and can allow health and social service providers to intercept a spiral of decline and withdrawal.

Limitations

The sample was relatively small and does not adequately cover the experiences of vulnerable groups including Aboriginal and Torres Strait Islander people, consumers with dementia and marginalised groups.

Suggestions for future research

Further engagement with older people, particularly vulnerable groups and males, using consumer focussed methods, would be valuable to better understand how their barriers to service access can be addressed.