Understanding Caregivers' Needs

Challenge

Caregivers of young individuals experiencing their first episode of psychosis often find themselves navigating uncharted territory. The complexities of mental health disorders, combined with the emotional and physical demands of caregiving, can be overwhelming. Despite their pivotal role in the recovery process, caregivers frequently lack the necessary support, resources, and recognition.

Study Overview 

This study explored the experiences of caregivers using the Program for Early Intervention and Prevention of Disability (PEIPOD) service at St Vincent’s Hospital, highlighting the gaps and opportunities for improving caregiver support. It aims to understand the experience and service from a caregiver's perspective. 

What is PEIPOD?

PEIPOD is a multidisciplinary service dedicated to working with young people and their families aged 16 to 25 years old who may be experiencing their first episode of psychosis or complex mood disorder. PEIPOD provides an early intervention service and promotes the best possible care for young people in the St Vincent’s Hospital catchment area, with emerging mental health problems.

Participants selected for this study are caregivers of individuals who had experienced a First Episode Psychosis.  These individuals were either currently or previously receiving treatment through the PEIPOD service within St Vincent's Hospital.  

Key aims:

• Provide feedback on areas of success and potential improvement.
• Understand caregiver needs.
• Identify types of support and potential formats for delivering support.

Quote from Caroline Brown, Clinical Psychologist:

"The role of carers in helping recovery with First Episode Psychosis clients often goes unnoticed. Considering their significant role in a patient's recovery, understanding how to support their wellbeing journey was of utmost importance. The St Vincent's Clinic Research Foundation grant was integral in putting together a cohesive research team to enable quality research to add to this important area of improving clinical outcomes for clients with psychosis at St Vincent's Hospital."

Key Findings

The research provided a deeper understanding of caregiver needs. Specifically, the need to feel part of the team, to be upskilled, and to receive ongoing support. These findings align with global research indicating that caregivers' needs, though often overlooked, are crucial for the recovery of individuals experiencing first-episode psychosis. Below is a summary of the key findings:

Caregiver Needs

1. Team Inclusion: Caregivers highlighted the importance of feeling part of the care team.
2. Knowledge & Support: There is a need for early preparation before becoming a carer. This includes more education about psychosis and direct communication with medical professionals.
3. Ongoing Support and Upskilling: Caregivers require training to enhance their skills, more accessible support resources and educational materials in plain language.
4. Emotional Support: Ongoing emotional support and encouragement for self-care are vital.

Service Access & Continuity of Care

1. Positive Interactions: Caregivers appreciated the availability and kindness of staff.‍
2. Service Limitations: Challenges accessing similar services when relocating, and lack of support when patients reach a certain age limit.‍
3. Staff Turnover: Frequent staff changes impacted the continuity of care.

Measuring Impact

Hearts and Minds measures its impact across six core categories as developed by the Association of Australian Medical Research Institutes. Key highlights include:

Advancing Knowledge

• Partnership: This research established and strengthened a partnership with the psychology department at the Australian Catholic University.
• Collaborations: The project fostered collaboration with similar programs in the Inner-West and East Sydney regions. ‍
• Publications: The team are working on two articles for publication in peer review journals.

Social & Health Impacts

The study aims to:

• Provide Better Access to Service & Education: The study aims to improve access to services and health literacy among caregivers.‍
• Practical Support: Developing practical support for caregivers that can be trialled and implemented, improving health outcomes for both individuals with psychosis and their caregivers.

Next Steps 

Several caregiver support structures could be implemented to address the findings from this study. A planning and design session with the PEIPOD and research teams is proposed to integrate the findings with global insights and practitioners' experiences. The goal is to generate practical support ideas for caregivers, leading to empirically tested support that can be trialled and rolled out. This aims to improve health outcomes for both individuals with psychosis and their caregivers.

‍Funding support from Hearts and Minds Investments, as nominated by Core Fund Manager, Magellan.

This content was last updated in July 2024, for further information and updates, visit St Vincent's Clinic Research Foundation.