1. Anette Graungaard, Department of General Practice University of Copenhagen 1 How do they manage? A presentation of Grounded Theory (GT)

2. Anette Graungaard, Department of General Practice University of Copenhagen 2 Research aims To investigate how parents experienced the realisation of their child’s disability To investigate how parents coped with this situation and if there were factors impairing or supporting the coping process

3. Anette Graungaard, Department of General Practice University of Copenhagen 3 Choice of analytic method Grounded Theory Method (GT) Well-described method with distinct description of analytic steps Does not aim at verifying a hypothesis The target of GT is to reach a conceptual theory, that can explain and predict the experiences of the interview persons in relation to their life conditions

4. Anette Graungaard, Department of General Practice University of Copenhagen 4 Design Longitudinal design with repeated qualitative interviews with parents of a severely disabled child with a two-year interval Purposeful and theoretical sampling ‘Selecting the cases from which you learn most’ Inclusion/exclusion criteria Sample size. 16 parents (32 interviews)

5. Anette Graungaard, Department of General Practice University of Copenhagen 5 What is an interview? An interview is a way to gain access to the interviewed person’s life-world (Kvale). The interviewer may guide the interview more or less strictly (interview guide) The interview person chooses for him or herself what they want to share with the interviewer

6. Anette Graungaard, Department of General Practice University of Copenhagen 6 Example of interview guide Research question: How does parents perceive their child? Interview question: ‘how do you see your child? ‘how do you describe your child to others? How do you describe the disability?

7. Anette Graungaard, Department of General Practice University of Copenhagen 7 The qualitative analysis How to describe an apple? formcolour taste smell surface firmness

8. Anette Graungaard, Department of General Practice University of Copenhagen 8 Constant comparison Do these two incidents or phenomena refer to the same concept or are they discrete concepts? ‘ That’s the problem, we still don’t know exactly why - The day we know why, maybe we will feel: ‘okay this is it now’ ‘ It’s my child anyway, it’s my responsibility. This is how it was meant to be, and I have to accept that, and I did a few hours after we got the message’

9. Anette Graungaard, Department of General Practice University of Copenhagen 9 conceptualization Phenomenon Training the child Concept influencing the situation Category seeking acting possibilities Themes needing to act Core category Data citation … because it is necessary to have an optimistic view, otherwise you don’t survive this... and it’s like we can do something, it is possible to make a difference

10. Anette Graungaard, Department of General Practice University of Copenhagen 10 Coding Example of open and axial coding Data Open codingAxial coding First there was the message of we didn’t have to… “We could find another municipality to live in, if we wanted” and” there are other options”, and it was very clear, that this was not just a hint that there were other places to live, so, it was very uncomfortable. It was only when we got someone else in to help, a social worker from (an independent institution), who could write to the authorities…. At least then something happened, not until then, did something happen, right? In as far the message was that only…, ‘it was not acute until one of us were hurt or had a bad back or something like that’, and that really scared me, because what if that happened then what? And then who should (care for the child)? And it would take some time to move out as well and so on, so if… Lack of empathy Lack of help from the system Perception of ‘thinking’ in social service system Stressful experiences Needing external expertise in negotiation Support provided, but stressful Clientization Physical consequences of lack of support. Conditions for help Increasing uncertainty Category: Social services contributing to stress Property -Physical consequences of lack of support -conditions for support -stressful encounters -support provided but stressful Subcategory Negotiating social services Properties Needing external expertise Perception of ‘thinking’ of the social services Subcategory Expectations of social services Properties Lack of empathy Lack of help from the system Dimensions of the category and the subcategories Increasing uncertainty clientization helplessness

11. Anette Graungaard, Department of General Practice University of Copenhagen 11 Axial coding The process of relating categories to their subcategories by using theoretical codes (causes, consequences, groups, processes, dimensions, strategies etc) Category-Needing to act Properties:-helping others -alternative treatment -seeking second opinion Dimensions:-Retaining hope -powerlessness -parental identity

12. Anette Graungaard, Department of General Practice University of Copenhagen 12 Selective coding

13. Anette Graungaard, Department of General Practice University of Copenhagen 13 The core category The ‘core category’ a few words that seem to explain what this research is all about Straus & Corbin 1998 Final theory : the core category is related to all other categories, and to the raw data and finally integrated with existing literature

14. Anette Graungaard, Department of General Practice University of Copenhagen 14 Examples on core categories Diagnosis: searching for certainty Transition to a new daily life: stressful encounters Resource-creation: an on-going proces

15. Anette Graungaard, Department of General Practice University of Copenhagen 15 Integrating the theory Diagnosis: searching for certainty Frustrated expectations Reaching for the child future pictures Needing to act Keeping hope

16. Anette Graungaard, Department of General Practice University of Copenhagen 16 Memoing Central task throughout the study ‘stop whatever you are doing and write a memo’ (Glaser) Code memos Ex: ‘it is of central importance to all parents that the child is acknowledged, praised and valued as an important little person, also if the child is severely disabled’ Theoretical memos Ex: ‘Telling the story to friends is ambiguous: it is good sharing experiences, BUT at the same time also confirming something that the parent do not want to believe is true…’

17. Anette Graungaard, Department of General Practice University of Copenhagen 17 Thank you for your attention

18. Anette Graungaard, Department of General Practice University of Copenhagen 18 Literature on GT Glaser and Strauss (1967): The discovery of Grounded theory. Sociology Press Strauss and Corbin(1998): Basics of qualitative research. Sage publications Glaser (1978): Theoretical sensitivity. Sociology Press Charmaz (2005): Grounded theory in the 21st century. The Sage handbook of qualitative research. 3.ed. Sage publ.