Frangipanis, friendship and football: understanding quality of life in residential aged care

1. Frangipanis, friendship and football: understanding quality of life in residential aged care Ms Geraldine Donoghue / Assoc Prof Evonne Miller School of Design, Creative Industries Faculty Queensland University of Technology Brisbane, Australia geraldine.donoghue@qut.edu.au A research collaboration between BallyCara & Queensland University of Technology

2. Project background / context • Critical demographic transition – ageing population • by 2050, one in four Australians will be older than 65 years – which is an increase from 13% to 22% of the population(ABS, 2005) • the number requiring high-level residential aged care is expected to increase 63%, up from 520,000 in 1998 to 1.4 million in 2031(ABS, 2005)

3. Active Ageing Framework for Understanding “Happiness” and QoL in Aged Care Figure 1: The three pillars of active ageing (WHO, 2002) The World Health Organisation has advocated ‘active ageing’, identifying health, participation and security as the three key factors that enhance quality of life for people as they age. The well known 'active ageing' dictum is that 'years have been added to life, we must add life to these years'(WHO, 2002) Participation: “provide education and learning opportunities; recognise and enable participation in formal and informal work; encourage full participation in community life” (WHO, 2002, p51-52) Health: “encompasses all aspects of physical, mental and social wellbeing, as expressed in the WHO definition of health” (WHO,2002, p47-51) Security: “ensure the protection, safety and dignity of older people by addressing the social, financial and physical security rights and needs of people as they age” (WHO,2002,p52)

4. Current research Figure 1: The three pillars of active ageing (WHO, 2002) • Existing research has tended to focus on: • reason for relocation into RACF (e.g., Krout et al., 2002; Timonen & O’Dwyer, 2009) • the relationship between positive attitudes and successful early adjustment to living in RACF (Bergland & Kirkevold, 2006; Edwards et al., 2003; Hjaltadottir & Gustafsdottir, 2007) • examining resident-centred care and specific initiatives that facilitate physical and emotional health, including nutrition, exercise, falls prevention, and inter-generational activities (e.g., Shura et al, 2011) • the association between the activity levels of residents in aged care and health related QoL (Jenkins, Pienta & Horgas, 2002; Voelkl, Fries & Galecki, 1995), • the relationship between place attachment and health (Heisler, Evans & Moen, 2004) • the impact of changing social interaction on health outcomes (Ball et al., 2000; Bergland and Kirkevold, 2006; Tsai and Tsia, 2008)

5. Knowledge Gap – “Happiness” and Daily Life in RACF There is surprisingly little research on defining and understanding what is important to older people living in care– in part because our focus is on operational day-to-day priorities (compliance, staff, nutrition, health etc). There is an extensive body of research on resident-centred care (and specific initiatives to facilitate physical and emotional health), yet the reality is: “insights into daily living in residential care settings are rare... there is limited research outlining what is important to older people who live in residential care settings” (Timonen & O’Dwyer, 2009, p.597) This research addresses this knowledge gap. Reference: Timonen, V. & O'Dwyer, C. (2009). Living in institutional care: Residents' experiences and coping strategies. Social Work in Health Care, 48(6), 597-613

6. Facilitating quality of life for aged care residents over-arching aim is to explore, understand and identify the key facilitators to QoL and active ageing in aged care from perspective of residents* 2012-13 pilot study tracked the expectations and experiences of 15 new (LOW CARE) aged care residents over a period of a year: • in-depth interviews • monthly brief surveys (tracking QoL) • PhotoVoice (a participatory photographic task; residents take photographs that capture their daily lives – “lowlights and highlights” - in aged care). Exhibition Outcome • * In July 2013- awarded an Australian Research Council Linkage grant to expand project (over 3 years ), investigating and longitudinally tracking the lived experiences of older Australians utilising the continuum of services from RACF (community care, independent living units, low-care), as well as the perspectives of key current and future stakeholders (including family, formal service providers and baby boomers - the future generation of older people)

7. Example Interview Items • Lets talk a little about what it is like to live here – and what things assist (or not) your overall quality of life and happiness • Tell me a bit about life here - how long you’ve lived here and tell me about what you do in your daily lives/activities? • What kinds of things do you do each day – and would like to do? (i.e., physical, psychological, social & spiritual well-being) • Tell me about any the things you like and dislike most about living here (Jot down issues and allow respondent to nominate as many as they like without interrupting, then go back and use the following 3 questions to explore each respondent category for more detail): ISSUES TO COVER • Social activities / interactions (other residents etc) • Staff • Daily life – e.g., food etc • Activities / Excursions • Health and Physical activity • Technology • Physical Environment – room, complex/village (RACF), local community • Other... what other things do you like and dislike?

8. Example Survey Items

9. Example Survey Items

10. Joining a “family” - forming positive peer &staff relationships Activities- creating a “structure for living” Residents’ mental attitude to living in aged care Maintaining independence - self-determination, autonomy & freedom “Living within these walls” - safety, comfort & physical environment Initial Findings – four key themes, centred on “mental attitude”

11. Theme - “Joining a Family” (social connections/interactions) Most residents described how they were leading much more socially active lives now than when they had been living independently. Residents reported feeling more social connectedness and involvement with others – forming important social relationships with both peers and staff Making the Christmas wreaths was such fun. What a festive mood! June’s photovoice

12. Theme - “Joining a Family” - Positive STAFF Relationships Ah we have fun with Ros! We have close friendships with the staff. June’s photovoice “like my own home, only I don’t have to do any work” “you’re taken care of. Yeah, yeah, well, that’s what I believe” Overwhelmingly, residents described the staff as being kind, respectful of their privacy and highly agreeable. Staff were generally very attentive to their individual needs. Even F1, who was desperately unhappy with many aspects of RACF life, explained how she was grateful for the kindness of staff who “genuinely care.. you can’t buy kindness and care”.

13. Interview responses reinforced the critical role carers play in facilitating resident’s quality of life, specifically the value of taking a few extra minutes during their daily routines to just talk. What resonated strongly throughout all interviews was the ‘culture of caring’ that all residents reported experiencing at Ballycara.

14. Theme - “Joining a Family” - Positive PEER Relationships “when you come in here, you feel like a family” (F6) “the friendliness of everybody…we are all here for a reason. We all get along together” (F4) Developing co-resident peer friendships helped foster feelings of belonging and a strong sense of being important to others (example - family noticed positive change) EXCEPTION: Not all residents viewed RACF as a “family”. Two found living in RACF very difficult, navigating a wide array of different personalities, personal life histories and behaviours – and hating ill health reminders Friendship. We have found great mates. Beryl’s photovoice

15. Theme - Activities, ”Structure for Living” When I was home I couldn’t care, I used to open my eyes in the morning and think ‘Oh, I’m still here another day.’ But since I’ve been here I’ve got, you know, ‘Oh, I’ve got crafts to do tomorrow’, sort of thing”. I’m into craft work now, which I’ve never been since I came in here” (F6) Life in RACF provided a structure to daily lives that most residents reported greatly enjoying. Valued the multiple activities on offer- including exercise classes, religious services/classes, bingo, craft, concerts and outings, which provided a reason to “get up in the morning and get dressed” We love crafts! June’s photovoice

16. not all appreciated activities in aged care “You should treat people like they are adults, not jolly them up. I look forward to activities, but I don’t think SONA has helped me to feel part of the community. I can't cope with people who are always noisy and happy, trying to be bright” EXCEPTION: Not all residents enjoyed the social activities, interactions and structure of life in RACF, resenting the limited degree of privacy and ‘forced, holiday camp’ vibe. As F3 explained, many of the activities did not interest her and the challenge was to find a “compatible group for cards... I don’t like Bingo, don’t need trips, don’t like listening to concerts... I would rather be in the concert”. When asked what could be changed to improve her quality of life and happiness in RACF, her answer was simple: “that is not possible”.

17. Women’s club coffee outing. Theme – Maintaining Independence Women’s club coffee outing “I think they want us to be independent and free as long as we can…” (F4) "Independently, I go down to the water each day…the mobility is good” (M1 Maintaining independence can be difficult for some residents of RACF, however, we found most residents reported feeling a critical sense of freedom in making their own choices in terms of day-to-day activities. Residents also felt staff encouraged their independence

18. “If I go out of the room, I either go up for meals or I go out for a walk. Or I go out. I mean I was out yesterday with my daughters and you do what you want…you can go out everyday, if you want to” (F7) Outing to local football match • Maintaining independence - self-determination, autonomy & freedom

20. Joining a “family” - forming positive peer &staff relationships Activities- creating a “structure for living” Residents’ mental attitude to living in aged care Maintaining independence - self-determination, autonomy & freedom “Living within these walls” - safety, comfort & physical environment Initial Findings – four key themes, centred on “mental attitude” Associate Professor Evonne Miller Research Leader School of Design, Creative Industries Faculty Queensland University of Technology Brisbane, Australia e.miller@qut.edu.au Ms Geraldine Donoghue Research Fellow School of Design, Creative Industries Faculty Queensland University of Technology Brisbane, Australia geraldine.donoghue@qut.edu.au