1. How and why people with amyotrophic lateral sclerosis engage with healthcare services: A qualitative study of service users’ experiences in Ireland Geraldine Foley 1, Virpi Timonen 1, Orla Hardiman 2,3 Background Findings Theoretical conclusions Research Method To identify key parameters of healthcare experiences among people with ALS from their perspective To develop substantive theory about how people with ALS engage with healthcare services Adapting to loss by exerting control in healthcare services Email: foleyg3@tcd.ie To identify key variables that shape how people with ALS engage with healthcare services To identify key psycho-social processes that explain how and why people with ALS engage with healthcare services Study aims Objectives Qualitative methods: Grounded Theory 1 Participants’ experiences of healthcare services conceptualised from the ‘ground up’ (inductive approach) Diverse group (n = 34) of participants in the Republic of Ireland sampled (without pre-defined geographical location) from Irish ALS population-based register (ca 265) September 2011 - August 2012 Participants sampled using purposive and theoretical sampling procedures In-depth qualitative interviews conducted with each participant in their homes (n=32), nursing home (n=1) and hospice (n=1) Interviews transcribed verbatim Data gathered and analysed in tandem Data analysed using open, axial, and selective coding procedures to identify key variables (categories) Relationships between categories explain how and why people with ALS engage with healthcare services Relationships between categories (variables) form substantive theory 8 th World Research Congress of the European Association for Palliative Care, Lleida, Spain 5-7 June 2014 References 1. Corbin J, Strauss A (2008). Basics of qualitative research. Techniques and procedures for developing grounded theory (3 rd ed). London: Sage Acknowledgements We thank all participants for sharing their experiences. We also thank the Health Research Board (HRB) of Ireland for funding this study [HPF/2011/1]. 1 School of Social Work & Social Policy, Trinity College Dublin, Ireland 2 Academic Unit of Neurology, School of Medicine, Trinity College Dublin, Ireland 3 Department of Neurology, Beaumont Hospital Dublin, Ireland Amyotrophic lateral sclerosis (ALS) is a rapidly progressive and terminal neurological disorder. Over 60% of people with ALS die within 1,000 days from disease onset. People with ALS engage with a broad range of healthcare services that extend from symptom onset to end-of-life care. Researchers have explored ALS service users’ experiences of services (in general and in specific domains of care) but little was known about how and why people with ALS engage with healthcare services. Participants sought to be in control of care when they engaged with healthcare services and they exerted control in healthcare to adapt to loss (including loss of control) in their lives: “I think as I say that when you have a pain you say I need a pain killer. My breathing is changing but I don’t want to lose control so if you need to breathe, you have to say I need that [NIPPV] to be in control [of care].” (participant #34) Participants equated living with ALS to a life of unremitting and insurmountable loss. Loss of control was central to their experience of loss: “I find myself in a constant battle, day after day because this, this MND [ALS] alien that has taken over my body and that I have not too much defence against. Normally in, in a war you win some battles, I’m losing all the battles and I know for a fact I’m going to lose the war. The war, the war is lost already because MND [ALS] is going to take me anyhow, but I’m not winning any battles because I feel that I don’t have, the arms that I’m provided with in no way, can in any way defeat or even hold back this alien that is taking me over.” (participant #31) Rendering control to service providers on their own terms also enabled participants to feel in control of their care: “I’ve been telling everybody that I want to keep my independence. But I have now got to the stage you know the steps of being independent are further away... I’d listen to advice but I mean the plan is going ahead. I mean I’ve made my plans … I’m very happy living here [home] and I plan to stay on here … I mean one is very lucky if one gets the back-up that I’ve got from the services … As my mobility declines I can ask them [healthcare professionals] what to do and they come up with answers.” (participant #25) (no control over loss) Exerting control in care Feeling in control of care Rendering control on own terms Fosters control Adapting to loss Context: Family and life-stage roles s s Family was primary context to how participants engaged with healthcare services. Participants made decisions about care in the interest of family, in order to reassure family and be reassured by family: “I accept we must all die. I accept what is coming … I prefer to be at home [for end-of-life care] and to have someone near me at night, my family, [spouse], my sons and daughters … I don’t want to be alone.” (participant #14) “I had to consider my family and the implications, it’s [assisted suicide] like a suicide, it’s like a suicide that you know, the pebble in the water, it spreads out, affects so many people and I suppose a lot of family like with, with suicide, you know, they get angry that you were selfish, you know why did you do it … There are serious implications for them because they want you just for another day.” (participant #12) Participants without a significant other and/or dependants felt they had more freedom than those with family to make decisions about their own care: “You see I don’t feel the need to hang on at any cost. If I had a husband, wife, children, it might be different so I am free to make the choice.” (participant #25) Participants’ emotions surrounding their desire to live on with ALS and their desire to die soon, were based on their perceived responsibilities as a parent (or their perceived freedom from such responsibilities): “I’d love to wake up in the morning with my toes permanently up. That is, dead! … I’ve my kids raised and everything... I’m lucky to have reached eighty and happy with what I’ve done.” (participant #13) “I have a wonderful relationship with my children, we’re very close. If they were adults they would probably deal with it better, so I am hanging on for that if I can. It’s all for them and that’s what brings the tears.” (participant #16) Participants with dependent children were less accepting of impending death and somewhat more likely to engage with interventions that would enable them to “be there” for their children: Exerting control in healthcare services is an adaptive response to loss in ALS Life-course trajectories shape how people with ALS engage with healthcare services Implications for practice Enable people with ALS to be in control of their care by engaging with them on their own terms Be attuned to the context of family roles in decision- making in ALS care Pay attention to how parenthood (at different life stages) guides the decisions people with ALS make about their care Family Parenthood Acceptance Age Life stage Loss Control Reassurance