CHAIR: Kate Munro
a. How to promote social connection: The views of culturally diverse older people
Prof. Merryn Gott
Background: There is mounting evidence that social isolation and loneliness are significant concerns within the context of ageing, dying and grieving. However, the views and experiences of older people are rarely privileged within discussions of ways to support social connections within communities of place, identity and interest. Aims: To explore understandings and experiences of social isolation and loneliness among diverse cultural groups of older people living in Aotearoa, New Zealand and identify factors they identify as promoting social connection. Design: We used culturally appropriate methods to interview 44 Māori, Pacific, Chinese/Korean and NZ European older people who experienced loneliness and/or social isolation. In addition, three focus groups were held with 33 older people in line with cultural preference to discuss this sensitive topic collectively. Thematic and narrative analyses were undertaken. We drew on participants’ narratives to produce an animation which aims to promote understanding of loneliness and social isolation within New Zealand communities. Results: Participants demonstrated sophisticated, and culturally situated, understandings of both loneliness and social isolation. For example, Korean and Chinese participants linked their stories of isolation with difficulties of integrating into New Zealand society, multiple Pacific participants contrasted their supportive family structures with those of NZE families, and Māori participants discussed ‘mokemoke’ (fretting, yearning, loneliness) in relation to a sense of loss for their tūpuna (deceased elders) and a way of life no longer available to them. Factors participants identified as facilitating or inhibiting social connection ranged from the individual (for example, health-related) to structural (for example, availability of public transport). We will screen the four minute animation, developed in response to participants’ call to challenge the stigma related to loneliness within New Zealand communities. Conclusions and application to PHPC: Promoting social connection has been identified as key to developing compassionate communities. We foreground the views of a culturally diverse group of older people as to how this may be achieved.
b. Ctrl Alt Delete
Dawn Pegram and Mo Blishen
Background: To look at the power shift in who controls the care of a palliative patient. Aim: We intend to look at who controls your care when you are dying (power) - Is it the family – the person who holds EPOA? - Is it the medical profession – Hospital or hospice, Doctor or Nurse? - Or is it the person who is dying? Actions: Researched and reviewed case studies. Outcomes: Has the balance of power changed? The take home message is that one model doesn't fit all and that dying is a very individual process.
c. Improving palliative and end of life care for people with severe mental illness and incurable conditions
Dr. Jed Jerwood
Background: People with severe mental illness (SMI) have a life expectancy of up to 20 years less than the general population. They also experience poor physical health and higher rates of many life-limiting conditions. Research on the specific needs of people with SMI in palliative and end of life care is extremely limited and very little concerns contemporary clinical practice. Aims: 1. To carry out a series of focus groups with clinical staff from both mental health and palliative/end of life care (PEOLC) settings exploring the barriers to care. 2. To carry out a interviews with patients (and carers) who have both SMI and an incurable condition to better understand their experiences in PEOLC. 3.To use the findings to inform the co-creation of the concept of a clinical resource to improve the confidence and competence of clinical staff with the aim of improving the PEOLC experiences of a significantly marginalised patient group. Design/Approach: Focus groups, interviews and a collaborative, creative co-creation process were adopted to collect data. Thematic analysis of the different sets of data and an iterative analysis throughout the co-creation process were carried out. Findings: The study found consistent themes which included the importance of patient and carer voice, the need to build confidence of clinical staff when working with people with SMI, the desire and ability of people with SMI to participate in palliative and end of life care planning, the need for better partnership working between clinical services, patients, families and communities. The co-design process highlighted the need for a resource which improves care through stories and narrative as opposed to guidance, policy or protocol. The concept for the resource will be presented during the presentation. Conclusions and applications to PHPC: This study offers novel understanding of the views, experiences and expectations of a group of patients often marginalised and excluded from palliative and end of life care. The findings offer valuable insights into how access to, and quality of, palliative and end of life care can be improved for people with SMI. The findings are of interest to researchers, clinicians, policy makers, communities, patients and carers.