For family and friends
The COO also supports the family, giving them practical advice and information to help ease the burden of this life changing event. They help the family navigate the care pathway for a SCI. COO’s offer emotional support, and organise peer support, linking them with other families who have been through a similar situation.
“We climbed a steep hill because we had no one to help us, we learned the hard way, the kids went from having an active dad to having a cranky old dad, a guy who has gone into himself”
SII have developed and adapted our services to meet the ever-changing needs of those living with a Spinal Cord Injury (SCI). We know family members have their own specific concerns and information needs distinct from the service user with SCI. As part our strategic review we held focus groups with family members to fully assess their needs. Information and support needs for family members are among the top 5 needs for those living with a SCI. Research also identifies the need for community support network, professional support and assistance family with navigating the health system.
Our research identified that:
- Family needs are secondary to the person with the disability
- Parents/partners and siblings described their role as one of: continuous workload and responsibility; emotionally draining; social isolation; planning & vigilance; lacking information/signposts and preparedness although also rewarding and meaningful
- Families need information tailored to individuals at each stage of the journey;
- opportunities for family peer support (information exchange, empathy, sharing)
“It is a frustration, it mentally destroys me, … it’s us as parents and what it does to our lives”
‘ You walk outside the door and you are walking into a maze. There’s no direction…..with cancer or the heart there are signposts’
We collaborated with the spinal team in the Mater Hospital. and our family outreach programme is fully support and endorsed by Mr Synnott, National Clinical Lead for Trauma Services and aligns with the HSE Trauma Consultation document;
- The HSE should ensure that a Family/Patient Liaison Officer is included in the trauma team activation
- be able to remain with the patient/family at each stage of their hospital journey and particularly on discharge from hospital.
‘Spinal Injures Ireland provided guidance on how to carry out those first crucial steps when you are flooded with grief and disbelief at the challenges ahead. They assisted me hugely by advising on how to avoid delays in accessing care. The family outreach officer is a credit to your organisation, and we are so thankful she was available to assist us”
We know that there are significant information and support needs for family members from the moment a SCI occurs, during the hospital stay, rehabilitation phase and after discharge home. Findings from our research conducted with NUIG and UCD in 2018 described how family life is disrupted, and new and unfamiliar responsibilities combined with emotional distress is the new reality. Family members have their own specific concerns and information needs distinct from the Service User. Research also identified the need for community support network, professional support and assistance with navigating the health system for family members and carers.
Our trained peer volunteers include family members who can provide one to one support to family members or in a group setting.
Whether you need answers to a simple question, or need assistance in some other way, we’re here to help. Please contact us using the link below, we look forward to hearing from you!Get in touch