Table 3

Examples of key CMO configurations for the ‘decision making process’ with supporting evidence

Context (C)-Mechanism (M)-Outcome(O)Example of supporting evidence from the literature
CMO: Families used ‘case based theory’ rather than ‘principal theory’ when making decisions. Here, narrative relating to the person with dementia is of prime importance (C). A more rewarding care experience occurs (O) with the use of agency (M), identity growth (M) and knowledge exchange (M). Primacy of narrative: ‘The ethical approach implicit in these families’ descriptions are consistent with a case-based theory, rather than a principle theory. When these family decision-makers utilized an abstract concept such as human dignity, they did so in a limited manner by discussing the factors that were important for the dignity of their relative, rather than for human dignity in general. They did not invoke patterns or principles from beyond their own experience.’77
Identity growth: ‘She had always been shy and didn’t want to entertain people. Yet, when her inhibitions were lost because of the Alzheimer’s, she would get excited when people visited. She enjoyed the Bible study in our home every Friday evening. One day I was late getting her up from a nap, and students were already arriving. I woke her, asking if she wanted to see the students coming. She jumped out of bed, replying, ‘I think they’ll want to see me.’ Indeed, she did have a special relationship with the students.’ 60
Knowledge exchange: ‘Inclusion was facilitated in other ways such as knowing the preferences of the person through previous interviews with them and their family, or by asking family members about what those preferences might be, building a biographical understanding of the person and being informed by that.’ 79
Rewarding experience: ‘I think whatever you do, you’ve got to do it with a relatively good grace. If you feel that you’ve been pushed into it, or you’re obliged to do it, then I think it won’t work.’ 59
CMO: Where there is interaction with professional care services (C), the decision making process can be facilitated to increase a person’s role as an active citizen (O). Mechanisms include compassion, knowledge exchange and confidence/autonomy (M). Knowledge exchange: ‘I was able to tell the doctor what was going on with my mom. And he was grateful for the knowledge. He told me what to expect and when to call the clinic. I felt better prepared after that.’ 48
Confidence/autonomy : ‘So they’re sort of pre-empting what they know is going to happen. [Yes] See I don’t necessarily know that’s gonna happen so they’re kind of giving me that information. ‘Look, you know, you’re gonna be heading down this road soon so you may wanna do this, this and this.’ So it’s helping me to future plan [Yep] which I find very helpful.’80
CMO: In a state of liminality characterised by indecision and uncertainty (C), medical paternalism and authority (M) can provide some direction allowing the decision making process to proceed with more fluidity but maintain a state of liminality and loss of control (O) Paternalism/authority: ‘So long as you say… ‘doctor’ in the sentence… she will go along with that, she will listen to that authority so that’s been good actually.’ (daughter) 59
My mother was asked what she thought and said, ‘Whatever the doctor thinks is best.’ 46
‘The second strongest influence affecting the decisions of both groups…was the advice of the physician105
You accept it because it’s easy…I think to meself [sic] ‘they are only trying to help you so let them do what they think is best’.72
CMO: Where relationships with a caring network become strained (C), a sense of guilt (M), failure (M) and uncertainty (M) in addition to the paternalistic actions of professional care networks (M) can cause the caregiving experience to become overwhelming (O) Strained relationships : ‘It’s a different thing when Mum (person with dementia) was living with us. He (participant’s husband) just didn’t handle things, and I was between the devil and the deep. I didn’t want to -Mum needed the care. I felt that she wasn’t ready to go into a nursing home at that stage, and yes, it was awful. It affected me very badly’ 71
Guilt : ‘The doctor said my mom could not live alone. You know, I love my mom, but she could not come and live with us. It would have disrupted my whole family. I know it is terrible to call your mother a disruption. What a guilt trip.’81
Paternalism : ‘…healthcare professionals unfamiliar with the family and the resident’s individual wishes were also noted to cause unnecessary anxiety, again resulting in reluctance of further contact.’ 70
Uncertainty : ‘…thus, critical issues of personhood, identity, agency, and control were embedded in our moms’ experiences and reflected in our experiences as families as we struggled to ‘do what was right.’ 49
Overwhelming : ‘I had no one to look after mum, so I couldn’t go to work, and I do believe that that impacted and I do believe that that’s one of the reasons that they fired me. Because I couldn’t attend work because I had to look after mum’ 62
CMO: Where powerful structures of care become involved (C), feelings of failure (M) and a loss of autonomy (or paternalism from healthcare professionals) (M) can lead to a care experience that feels overwhelming (O) Professionalised care: ‘Dementia starkly reveals the Cartesian biomedical model’s incomplete understanding of ‘health,’ through its inability, even unwillingness, to develop effective (non-biomedical) interventions to address a range of experiences of disease in their social, relational context.’3
‘…carers experience in receiving formal services is inherently ambiguous, for while formal services are providing support to family carers, they can also be undermining their sense of identity and control over their circumstances62
Loss of control/autonomy in the care role: ‘Oh God no, they did everything, all I had to do was go and visit and feed her. Didn’t even have to feed her but I liked to.’ 57
  • The full list is available in the online supplementary file.