Background
Primary NPT mechanism | Sub-construct |
---|---|
Coherence | Differentiation |
Communal specification | |
Individual specification | |
Internalization | |
Cognitive Participation | Initiation |
Enrolment | |
Legitimation | |
Activation | |
Collective Action | Interactional workability |
Relational integration | |
Skill-set workability | |
Contextual integration | |
Reflexive Monitoring | Systematization |
Communal appraisal | |
Individual appraisal | |
Reconfiguration |
Aim
Methods
Qualitative approach and research paradigm
Researcher characteristics and reflexivity
Study design
Context
Study participants
Recruitment
Informed consent and eligibility screening
Reasons for non-participation
Intervention
Data collection
Primary NPT Mechanism | Interview Question |
---|---|
Coherence | • How does the support provided in the intervention differ from the support people with dementia are currently receiving? • How would you describe the purpose of the intervention? • What impact do you think the intervention can have on people with dementia and informal caregivers? |
Cognitive Participation | • What type of support do you think people with dementia and informal caregivers need to understand what the intervention is and how it should be used? • What type of support do you think people in your organization need to understand what the intervention is and how it should be used? • What difficulties might people with dementia and informal caregivers experience when using the intervention? |
Collective Action | • How would the intervention affect the way of working for the workforce providing the support to people with dementia and informal caregivers? • What can be done to ensure that the intervention becomes part of the everyday work for the workforce providing the support to people with dementia and informal caregivers? • What resources would be needed to ensure that the intervention becomes a part of the everyday work for the workforce providing the support to people with dementia and informal caregivers? |
Participant characteristics
Participant | Age (5-year interval) | Gender (Male/Female) | Experience working with dementia (years) |
---|---|---|---|
Healthcare professional 1 | 60–64 | Female | 45 |
Healthcare professional 2 | 55–59 | Female | 30 |
Healthcare professional 3 | 45–49 | Female | 17 |
Healthcare professional 4 | 40–44 | Female | 0.5 |
Healthcare professional 5 | 40–44 | Female | 8 |
Healthcare professional 6 | 60–64 | Female | 26 |
Healthcare professional 7 | 25–29 | Female | 2 |
Healthcare professional 8 | 60–64 | Female | 31 |
Healthcare professional 9 | 60–64 | Female | 40 |
Healthcare professional 10 | 40–44 | Female | 8 |
Healthcare professional 11 | 40–44 | Female | 16 |
Healthcare professional 12 | 55–59 | Female | 9 |
Healthcare professional 13 | 45–49 | Female | 12 |
Healthcare professional 14 | 55–59 | Female | 40 |
Healthcare professional 15 | 40–44 | Female | 16 |
Healthcare professional 16 | 35–39 | Male | 1 |
Healthcare professional 17 | 25–29 | Female | 1 |
Healthcare professional 18 | 40–44 | Female | 16 |
Participant | Age (5-year interval) | Gender (Male/Female) | Size of community organisation (National/Regional) | Employed or volunteer in community organisation (Employed/Volunteer) | Experience working with dementia (years) |
---|---|---|---|---|---|
Community stakeholder 1 | 60–64 | Female | National | Employed | 10 |
Community stakeholder 2 | 70–74 | Female | Region | Volunteer | 40 |
Community stakeholder 3 | 70–74 | Female | National | Employed | 17 |
Community stakeholder 4 | 70–74 | Female | Regional | Volunteer | 43 |
Community stakeholder 5 | 75–79 | Male | Regional | Volunteer | 8 |
Community stakeholder 6 | 75–79 | Male | Regional | Volunteer | 10 |
Community stakeholder 7 | 65–69 | Female | Regional | Volunteer | 10 |
Data processing
Data analysis
Trustworthiness
Public contribution in research
Results
Primary NPT mechanisms and sub-constructs (categories) | Definition |
---|---|
Coherence (sense-making) | Individual and collective work to make sense of implementing and integrating the intervention into routine practice |
Differentiation | Ability to distinguish the intervention from current practice |
Specification | Agreement concerning the purpose of the intervention |
Internalization | Understanding the value, benefits, and importance of the intervention |
Cognitive Participation (commitment and engagement) | Relational work, driven by commitment, to build and sustain the intervention in practice |
Initiation | Working to drive the intervention forward |
Enrolment | Organizing in order to contribute to the intervention work and to sustain engagement in the intervention |
Legitimation | Agreement that the intervention is the right thing to do and that it should be part of routine practice |
Relational interaction (inductive) | Establishing and maintaining care relationships required for commitment and sustained use of the intervention |
Definition and evaluation of the situation (inductive) | Understanding, defining, and evaluating of the dyad’s situation and need for the intervention |
Collective Action (work to enact) | Work to enact the intervention in everyday practice |
Interactional workability | Working with each other, and the intervention, to seek to operationalize it in routine practice |
Relational integration | Building accountability and maintaining confidence in each other in continued use of the intervention |
Skill-set workability | Allocating work around a set of practices (e.g., training) to operationalize the intervention in routine practice |
Contextual integration | Allocating resources, protocols, and policies, and procedures to operatize the intervention in routine practice |
Prerequisites for intervention interaction (inductive) | Prerequisites for the dyad to manage and undertake the intervention in their everyday life |
Coherence
Differentiation
“There is very little support available. That is the problem. There is nothing.” (Community stakeholder 4)
“I recognize a lot; it is not new.” (Community stakeholder 2)
The problem is that there is no next step, it is somewhat different in different regions, what is available at different hospitals. But in general, there is no post-diagnosis plan, and that is a big problem.” (Community stakeholder 1)
Specification (individual and communal)
“To support the caregiver and PWD so they together can improve the life-quality of the PWD, I would say. So that the person [with dementia] can carry out activities in everyday life that he/she feels are manageable. You have a tool to be more active with activities that works, even though you have dementia.” (Healthcare professional 1)
Internalization
“I think the material provides a very concrete tool for both the caregiver and PWD to work with, and that is great. This is often what I see among caregivers, that they do not know how they can support [the PWD] or what they can do”. (Healthcare professional 3)
“In worst case, it [the intervention] will put pressure on caregivers who feel it is their responsibility to make sure that the PWD does all these things. And if you are caring for a person [with dementia] who experiences difficulties getting things started or has apathy, then the risk is that it [the intervention] turns into demands, pressure, and failure for the caregiver.” (Healthcare professional 10)
Cognitive participation
Initiation
“If I am thinking from my perspective, it must be a manager who makes sure that it [the intervention] happens.” (Community stakeholder 7)
“Involvement of local associations is needed, that the people responsible for local associations can go through this [the intervention and its material] and find out what they can do [to help support the intervention].” (Community stakeholder 3)
Enrolment
“You must get an explanation why we are doing this [the intervention], what is important about it, and that we are helping their whole life together.” (Healthcare professional 11)
“The big problem is lack of ability to take initiative, many [PWD] have lost their ability to take initiatives completely, not only the motivation but the initiative itself. But it is incredibly different for different people, this [the intervention] is probably great for some people and quite bad for others.” (Healthcare professional 8)
Legitimation
“I think that we, as caregiver consultants, could help to a certain extent and support caregivers in that [guiding the intervention], but they probably also need quite simple and clear information on what can be gained. Since there will still be a certain burden on the caregiver, they must see a profit from it. But I think as a caregiver consultant, I would be able to do that, be able to support the caregivers.” (Healthcare professional 9)
Relational interaction
“You establish trust and then you can take the rest [of the intervention]. It can be difficult with new contacts for many [PWD] or you can be suspicious and wonder about things. No, I think a person with whom you feel safe and with whom you can communicate, then I think it will go very well.” (Healthcare professional 2)
Definition and evaluation of the situation
“Of course, the condition [to engaging in the intervention] is that they admit that they have this [dementia] disorder. Because when they do not acknowledge this, they will not want to join [the intervention] …, then it is hard to get them to participate.” (Community stakeholder 6)
“I think that younger people will find it easier to seek help compared to the elderly, because there is also some kind of stigma there. It is like dementia, it is a bit embarrassing, maybe you have not even told your children that the husband or wife has started to get disoriented and confused, and they are also the ones who want to fend for themselves. I think that those who are younger, the 60-plus people, they are probably seeking more help.” (Healthcare professional 6)
“It is so important that we dare to talk about mental illnesses and that we get there when it comes to dementia too.” (Community stakeholder 2)
Collective action
Interactional workability
“We are an organization [non-governmental organization working with dementia and caregivers] that works a lot for caregivers … We could offer or be able to inform what is available, what support is available and so forth.” (Community stakeholder 1)
“I think it [the intervention] would take up a lot of my time. I think I would have to change my ways of working completely.” (Healthcare professional 11)
Relational integration
“I think occupational therapists are great at breaking down activities ... That is what is needed, to really be able to break down activities to simpler difficulty levels, and to set new goals to achieve something.” (Healthcare professional 7)
“My first spontaneous reaction was that the ones I know [PWD and caregivers] would probably not manage this.” (Healthcare professional 6)
Skill-set workability
“It must be someone who have knowledge of dementia and provide support if problems arise, and at the same time is able to support the caregivers… Have common sense, being empathetic and have knowledge in dementia.” (Healthcare professional 2)
Contextual integration
“The thing is, if this [intervention] were to be presented to politicians and they would say ‘yes, this is what we are doing’, then we would be doing it. Then funding and resources would be invested so that this [intervention] would become visible and implemented .... Then you need someone who keeps the project going, who has a perspective in it, I think. Not just a small project that lasts six months or a year, but it requires long foresight. I also think that the same commitment from the region is needed, in my opinion, in order for us to do well.” (Healthcare professional 18)
“Above all, we have to get the politicians started so that they understand that we have to do something, because the costs today, so they are insurmountable. We are talking about 63 billion SEK back in 2012. I think you can add at least 10 billion to today's date for what these disorders cost just us in Sweden.” (Community stakeholder 3)
Prerequisites for intervention interaction
“When I meet caregivers, they are really crying out for help and support, sometimes they are just fumbling in the dark. Once I met a caregiver and I just listened to her, I did not say anything, because I did not know much then. But then she came back and she said ‘Thank you, I remember you. Everything was such chaos, but you were there and listened to me’. Maybe that is what it is all about, that caregivers get... you get to talk to a supervisor and get to feel this support.” (Healthcare professional 16)
“It is a bit too much… When you have read through it [the material] … There is a lot to keep track of.” (Healthcare professional 16)