Background/Aim: Caring for a family member who is approaching the end of their life can be challenging. As primary caregivers, family members assist with physical/medical tasks, make financial/medical decisions, provide emotional support, and advocate within the healthcare system. Young carers face additional challenges in this role. This presentation explores the emotional and logistical challenges that young caregivers face in palliative care, as well as the resources and support that can make a difference in their ability to cope. 

 

Methods: Sisters Kelly and Karina will share their personal experiences caring for their palliative father. This will be combined with empirical research to explore the impact of having a parent in palliative care on young caregivers and ways to support them.

Results: The presentation indicates that being a young carer is associated with unique challenges. Young carers have less time to develop crucial care taking skills, have difficulty navigating important milestones, and often feel isolated from peers. Young people who care for their parents are also at greater risk of psychosocial outcomes including poorer psychological functioning and deteriorations in family dynamics and communication. However, some young carers experience positive aspects such as posttraumatic growth. While previous research indicates that psychosocial interventions for family members can attenuate negative outcomes, through personal experience the presenters highlight the limited availability of such care, and need for services which cater to the unique experience and challenges of young care givers.
 

Conclusion: The presentation offers a thought-provoking perspective on the importance of supporting young caregivers through the palliative care process and the need for greater awareness and services for this vulnerable population. It also provides recommendations and resources for healthcare professionals in palliative care who support young caregivers in this context. Through a combination of personal narrative, research insights, and practical tips, this presentation will provide a rich and engaging exploration of the emotional landscape of caring for a prematurely ill parent.

Storytelling can bring solace to the bereaved and enable others to lean into the depth and complexity of the lived experience. Unmasking Grief shares the experience of four bereaved mothers in the lead up to their child’s death and life beyond, in a bid to ‘Unmask’ the reality of grief for their peers and those who care for them.

Within the paediatric palliative care national action plan stakeholder consultation process consumers highlighted the need for education around grief. Collaboraide, a specialist consultancy in thanatology was approached to deliver a video series that met this identified need.

 

Expressions of interest were advertised through the PPC National Action Plan Project Bulletin. Four bereaved mothers responded and consented to participate in the co-design project. Four Zoom workshops were facilitated by Collaboraide principal, Dr Leigh Donovan. Workshops were recorded and transcribed with key themes identified in collaboration with co-designers. 

 

Six themes form the chapters of the six-part video series. Chapter 1: ‘We were broken but we didn’t show it’:  Grieving in anticipation of my child dying; Chapter 2:  ‘‘This is your child and you want to get it right’:  Approaching end of life and planning for my child’s funeral;  Chapter 3:  Waking up to the ‘angry raging monster’ of grief: grieving beyond the death of my child;  Chapter Four:  ‘Living a backward treasure hunt’: Trying to put myself back together again;  Chapter 5:  ‘Enveloping myself in a blanket of love’: Rituals, metaphor and symbols;   Chapter  6:  ‘Balancing joy and sorrow’: Finding a place of comfort and solace in grief.

Grieving openly in a world that resists confronting suffering is arduous. The bereaved learn to put on a mask to avoid experiencing more pain or unintentionally inflicting pain on others. Unmasking Grief invites our community to both expose and witness grief in a truly authentic way.

How we die can be just as important as how we live our lives. 
 
 Ensuring that palliative or end of life care is culturally appropriate is important, given that approximately 25% of the Australian population was born overseas, and 50% of the population has one parent born overseas (ABS Census 2021). Talking about how a person would like to live their final days can be an important conversation to have. Many people shy away from such conversations, feeling that they are inappropriate, uncomfortable, and difficult to have with their loved ones. The situation becomes even more challenging when the person who is dying is from a culturally appropriate background. 
 
 What does dying in a dignified and culturally safe way look like? How can we ensure that the dying person has the information they need, in-language, and are able to express their final wishes in terms of what their final days should look like?
 
 In 2019, Sonia Di Mezza's (the presenter's) father Guido Di Mezza, passed away in her home from lung cancer at the age of 87. Guido was an Italian migrant, who migrated to Australia from Italy in the 1950s. He passed away within a few months of his diagnosis. Working with experts and experienced palliative care staff from Clare Holland House in the Australian Capital Territory, Sonia and her family were able to achieve culturally appropriate, safe palliative care, including supporting her father to experience a meaningful end of life journey. In this presentation, Sonia will share her experiences and lessons learned, with a view to supporting other people in Australia to achieve culturally safe and peaceful end of life care, for family members from culturally and linguistically diverse backgrounds. 

Background: Little is known about how bereaved people used informal support to cope with their grief under varying public health restrictions during the COVID-19 pandemic.

Aim: To explore informal supports and coping strategies utilised by bereaved family and friends of people receiving palliative care to manage their grief between 2020 and 2021.

Methods: Australian adults who experienced a death from any cause during 2020-2021 participated in a one-hour semi-structured phone or ZOOM interview focused on where the death occurred (hospital, palliative care, a residential aged care facility or elsewhere). Recruitment continued until data saturation was reached (n=100). Sixteen participants indicated their family member/friend was receiving palliative care at the time of death and form the basis of this analysis. Interviews were audio-recorded, transcribed, and analysed according to Braun and Clarke’s thematic analysis.

Results: The following themes emerged: 1) enduring unprecedented social isolation; and 2) drawing on available resources where choice is limited. Participants reported the challenges of social isolation and disconnection during the pandemic. Many were unable to physically gather with their family and friends to grieve due to various public health restrictions across time and locations. Participants described adapting to restrictions by using the resources and coping strategies available to them to fulfil support needs during grief. While participants described feeling supported by palliative care clinicians before the death of their friend/relative, they reported a need for information about bereavement support. 

Conclusion: Bereaved families and friends of people receiving palliative care sought informal support and used various coping strategies to manage their grief during the pandemic. Palliative care teams can better facilitate coping by providing information on grief and bereavement before the death. This would include information and linkage to informal support networks, community groups, and bereavement counselling services, as well as information about adaptive coping strategies. 

The Therapeutic Harp program has been offered across Canberra’s Health Care facilities for the past 15 years. It is a compassionate service where music is adjusted and offered to support and enhance emotional, spiritual, psychological and physical wellbeing in palliative and end of life care. 

The harp has many soothing qualities, including, beauty, resonance, vibration and can soften the soundscape of modern health care environments. There is no required outcome for the patient and harp music is curated and   constantly adjusted to support whatever the person is experiencing in the present moment - whether that’s to uplift, calm, assist rest and sleep, encourage reminiscence, comfort, distract, reduce anxiety, soothe, augment pain medication, or support during end-of-life care. This can offer an extra mantle of care creating a sacred space within the hospital/hospice setting. 

This program also offers continuity of care – often meeting patients and families at the beginning and then following their health care journey as they have treatment, hospital stays, movement between facilities and often playing at the time of their death and then by request at their funeral.

Accompanied by a small harp, Alison will focus on unique stories from the Therapeutic Harp Program in Canberra, this compassionate service, its range, depth and the possibilities in palliative and end of life care for other health care facilities where the music can benefit not only patients but families, visitors and staff. 

Background: 
Relating skills are a growing area of research and describe the range of often non-verbal skills needed to be responsive to a client’s emotional and spiritual state. These skills can go by several different names, including ‘therapeutic use of self’, ‘attunement’ and ‘compassionate care’, but they all describe how the human spirit is addressed in care. After my five-year-old daughter developed a rare and aggressive brain tumour (DIPG) in late 2021, I went from being a health professional to being the parent of a terminal paediatric patient. During our daughter’s seven months of regular interactions with health professionals, I found many examples of these essential relating skills.  
 
 

Aims: 

1.        Discuss relating skills in the literature

2.       Our parent/child experience

3.       Examples of relating skills

 

Methods: 
A scoping review using the JBI methodology was selected to map a broad range of literature. Thematic analysis created four over-arching themes of how spirituality was integrated into practice, of which one was “relating”. Current research on relating skills will be presented, alongside our parent/children palliative care experience.  Examples of relating skills will be given. 
 

Results: 
Active listening, building rapport and relationship, and holding a client’s hand were all relating skills seen in the Australian spirituality in healthcare literature. Amongst the health professions, nursing led the way in describing these skills. The common health professional relating mode of 'positivity' can be a mismatch for patients who are sad, shy or in pain. The relating skills of ‘presence’ and ‘active listening’ will be described. 
  

Conclusion: 
Relating skills aim to meet patients where they are at, and support the human spirit in care.

The Kowhai Programme, a family carer education programme, has run in Dunedin since 2011. Developed from research with family members caring for a loved one at the end of life, a series of twelve topics was identified as key information that would benefit those family carers. 

 

With equity and access in mind, it was extended to rural regions early in 2020. The arrival of Covid19 instigated further changes in programme delivery. We also understood that many people who didn’t have access to the programme would benefit from the information.  Knowing the podcast platform is increasingly used to access expert information, yet a search of palliative podcasts found little family carer information. It was apparent that this innovation could be a way to share this information beyond those enrolled on a hospice programme. 

 

This Ending Life Well podcast series is a natural progression as we endeavour to reach our communities in the ways they need to be reached. And to reach beyond hospice patients, giving something back to the communities that support us. The podcast series enables anyone caring for someone who is palliative to access key information. While written in NZ it is being downloaded around the world and is particularly relevant across Australasia.