Children’s Views of Being Nursed at home

1. Children’s Views of Being Nursed at home Duncan Randall The University of Warwick School of Health and Social Studies Funded by The Health Foundation

2. Children’s Views of Being Nursed at Home • Background to the study • Thematic Literature review • Methodology & methods • Findings • Points for discussion • Future research.

3. Children’s view of being nursed at home: background • Doctorial studies at the University of Warwick- School of Health and Social Studies • Funding from Leading Practice Through Research Award- the Health Foundation • Ethical approval from Solihull Research Ethics Committee • Access –South Birmingham Primary Care Trust, Warwickshire Primary Care Trust and Heartlands NHS Trust

4. Nursing children at home • Increasing numbers of children (Glendinning 2001) • Expansion in Community Children’s Nursing ( Cramp et al 2003) • Patient, Public Involvement agenda (Health Committee 2007)

5. What children have already told us! The Child “Normal “ Child Social Structural Child Children’s Nursing Fun, Connected & Competent Resisting Nursing Control

6. “normal”child • Focus on family, friends and play- Carter 2005. • Passing- Goffman “She doesn’t want to be different from others. She wants to be like the others. The fact that she has a machine overnight doesn’t bother her because on one sees it.” (Carnevale 2007 page 15) • Developmental & educational normality.

7. Social Structural Child • Child/childhood ↔ Culture & Society ( Mayall 2002). • Bluebond Langner (1978) “private world of dying children” children understood the culture of the hospital. “The nurses do most of the actual work, but they have to check with the doctors don’t they?” (Holyoake 1999 page 35) My Dad thinks the nurses should be a bit more good looking…I think the same. I think you need a fit nurse looking after you.” (Ramm et al 2004 page18)

8. Children’s nursing: fun, connected & competent • Personality- being fun and nice “Sophie said “ They’d not be much use if they were good [competent] but no fun” (Carter 2005 page 56) • Randall et al (2008) professional persona: calm, caring, courageous and connected. “Teach them to not rush and to take all necessary precautions. They should speak to you nicely and explain what they are going to do and why. They need to take their time and listen to you. Important to be sociable and have non-medical chat.” (Randall et al 2008)

9. Resisting Nursing • Preference for parental care (passing for normal?) • Reluctance to talk about nursing “They proposed “The Diana caring Team”, “The Diana Caring and Playing People” and “Diana Ladies”. They thought including the word “nurse” sounded quite “scary” and explained that the “Diana ladies don’t have needles like real nurses…” (Carter 2005 page 57) • Hurtful nursing care. • Gendered privacy issues- embarrassment.

10. Control • Loss of control to staff agenda and bureaucracy (Coyne 2006) • Diabetic care Kyngas et al (1998) “This of no help to me, because the nurses do exactly what the physicians say. They dare not change anything. They have no flexibility in what they do. Their actions helps the physician not me.” (Kyngas et al 1998 page 764) Good compliance: Motivating 9:12 (75%) vs Dr instruction or Routine 15:36(42%).

11. Evidence base for children’s views of community children’s nursing. • Bias to hospital studies in data and reporting • Inter generational issues- reducing influence of adults, collecting children’s views. • Variable quality- • Bias older children/gender • Lack of independent review • Poor description of methods • Ethical review. • Nursing services – Carter 2005 • Children’s ways of knowing: emotion of visual methods (Carney et al 2003).

12. Methodology • Alison Clark (2004) Mosaic Approach-Children’s Participatory Research • Phenomenology, Ethnographic & Visual approaches • Influenced by the sociology of childhood- Berry Mayall (2002) • Exploratory qualitative research

13. Methods Stages 7 • Bracketing interviews • Group 1 with children • Photo talk diary • Observation visits • Group 2 with children • Observation of nurses • Group interview with nurses.

14. Help Tree from Photo Talk Diary

15. Data Analysis • Familiarisation • Thematic framework-open coding • Charting • Mapping and interpretation ( Miles and Huberman1994/ Ritchie and Lewis 2003)

16. Findings: sample • 6 families + rabbit • Children 5-12 • Visited regularly at home by Community Children’s Nurses • Range of conditions • Arthritis • Leukaemia (two children) • Epidermolysis bullosa • Growth disorder • Psoriasis

17. Findings: sample 1

18. Findings: sample 2

19. Findings: sample 3 Range of… • Family structures • Parental education • Mothers left education 16-21( mean 18) • Fathers left 14-22 ( mean 17) • Both had range of qualifications from none to degrees • Family incomes • Housing types

20. Findings themes • Family, friends & school • Mums • Dads • Siblings & extended family, transitional objects • Teachers & school friends • Nurses • Regard for nurses • Administration of therapeutic interventions • Other roles not seen • Gender

21. Family, friends & school

22. Kelly: …my mum really helps because she’s like the nurses she always gives me my medicine and when ever I am poorly she like takes me to the doctors or something to check me out in case something really bad has happened,… Kelly interview after observation visit Researcher: Who’s the best at doing your dressing? Mohammed: My, mum, my, my mum.” Mohammed interview with photo talk diary Mums

23. Mums Honey help page from photo talk diary

24. Researcher: Who’s the nurse in charge? Mohammed: Who’s the nurse in charge? my mum. Researcher: Your mum, very good…(Pause)…who’s the next one in charge after your mum? Mohammed: Nobody Mohammed interview with photo talk diary Mums

25. Dads Nanny with her dad photo taken on disposable camera (altered to protect identity) with permission.

26. Nanny’s fun dad

27. Transitional Objects, toys and pets: Nanny’s dog

28. Teachers & school friends Kelly: Erm my class, when I was in year 3, I had a teacher called [names teacher] that was, she was nice and erm.. she told the class that I had Arthritis and to be careful and that, and…They’ve always helped me, the class has…They helped me up and down on the floor and stuff Researcher: ow ok…(Pause)… so you still have to sit down with everybody else on the floor for circle time do you. Kelly: Sometimes, and sometimes I sit on a chair. Kelly interview with photo talk diary

29. Confirmed statements:Group 2 • I don’t like to think about being ill I prefer to think about playing with my friends and being with my family.  • I would rather have my mum or dad do all the things I need to keep me well, than have nurses visit me at home. • A good nurse is fun, but also knows how to do things right to make me better, they respect me as a person and work with my family and friends

30. Nurses

31. Researcher: What if we did this thing from sort of ten is the well the best you could be and zero is like very very ill Kelly: I wouldn’t think I was like really ill , I wouldn’t think I was that Researcher: What would you say what sort of number would you put on it Kelly: I would like , just , just over 5 Researcher: Ok put a cross or something Kelly: about 7 Researcher: A 7 oh OK so what makes you well do you think? Kelly: Umm like my needles make me well Researcher: Ok right what else makes you well Kelly: Like my mum because she like always giving me help and like on that thing Kelly interview after observational visit Nurses + VE

32. Researcher: …what else did you tell us in your diary make sure I got it right, you don’t like nurses shaking your head again ok the machine doesn’t know you see umm but you did not particularly like the nurses at hospital either, you do like the nurses at hospital [nods head] you do. Who is your favorite nurse at hospital? Gizmo: Don’t Know Researcher: Are they all nice yeah? How are the ones who come and see you at home different then do you think Gizmo: Don’t like them I hate them Researcher: I know, I know you said that why is that Gizmo: Pulling my tube Researcher: What about when they come and give wiggleys a drink what’s that like Gizmo: The same Gizmo interview after observational visit. Nurses -VE

33. Negative regard for all nurses • Not rationalised • Associated with poor understanding • of illness and function of nurses • Positive regard for nurses • Rationalised (“they make me better”) • Associated with good illness knowledge Regard for nurses

34. Video: group 2

35. Kelly: That’s a picture I drawn. Researcher Yeah Kelly: That’s the needle……with the injection Researcher Yer, yer, and what’s in this hand? Kelly: Erm, a tissue that she puts on my leg when she’s done the needle. Kelly interview with photo talk diary Administration of therapeutic interventions

36. Researcher: So your mum does your dressings… Mohammed: Yes Researcher: Who, who taught your mum to do that? Mohammed: Err, the doctor Researcher: The doctor, ok Mohammed: Her name is Dr [gave name of consultant] Mohammed interview with photo talk diary Teaching : not seen

37. Kelly: because like I’ve got loads of girl nurses and it’s just a bit strange having a boy come to your house and giving it ya Researcher: yeah? can you tell me why it’s strange Kelly: because like you saw I wear shorts …it’s a bit like scary cause like I got my shorts on and Researcher: So when [male CCN] comes would you like to have longer shorts so he doesn’t have to see so much of your leg…. You don’t feel as comfy as if it were a lady Kelly: No I wouldn’t mind if they were a lady because umm or girl because like because they are the same as me and, they have got the same things as me like [pause] like they got the same things as me Kelly interview after observational visit Gender

38. Points for discussion • How should CCNs respond to children’s preference for maternal nursing care? • How can CCNs help children understand illness and take control of their health care? • What support could CCNs offer to parents to enable them to empower their children living with illness? • What could CCN services do to respond to children’s desire for same gender nurses?

39. Future research • Can improving children’s illness knowledge and empowering them to take control of the nursing care they receive improve health outcomes? • How does gender affect the evolution of the occupation and profession of community children's nursing?

40. References • Bluebond-Langner M (1978) The private worlds of Dying children, Princeton: Princeton university Press • Carter B (2005), ""They've got to be as good as mum and dad": children with complex health care needs and their siblings' perceptions of a Diana community nursing service", Clinical Effectiveness in Nursing, vol. 9, pp. 49-61. • Carnevale F A (2007), "Revisiting Goffman's stigma: the social experience of families with children requiring mechanical ventilation at home.", Journal of Child Health Care, vol. 11, no. 1, pp. 7-18. • Coyne I (2006) "Children's Experiences of Hospitalization", Journal of Child Health Care, vol. 10(4), pp. 326-336. • Clark A (2004) "The Mosaic Approach and Research with Young Children," in The reality of research with children and young people, Lewis V, Kellet M, Robertson C , Fraser S, & Ding S., eds., Sage/The Open University Press, London, pp. 142-161 • Cramp, C., Tripp, S., & Dale, J. (2003), "Children's home nursing: results of a national survey", Paediatric Nursing, vol. 15 (8) pp. 39-43. • Glendinning C, Kirk S, Guliffrida A, & Lawton D (2001), "Technology dependent children in the community definition, numbers and costs", Child Care Health and Development, vol. 27(4), pp. 321-334. • Health Committee (2007) Patient ,Public Involvement in the NHS, London, The Stationery Office

41. References • Holyoake DD (1999) Who’s the boss? Children’s Perception of Hospital Hierarchy, Paediatric Nursing 11(5)33-36 • Kyngas H, Hentinen M, & Barlow JH (1998) "Adolescents' perceptions of physicians, nurses, parents and friends: help or hinderance in compliance with diabetes self care?", Journal of Advanced Nursing, vol. 27, pp. 760-769. • Mayall B (2002), Towards a Sociology for Childhood: Thinking from Children’s Lives, Open university press, Birmingham. • Miles, M. B. & Huberman, A. M.(1994), Qualitative Data Analysis: An expanded sourcebook, 2nd edn, Sage, London. • Ramm J, Hopwood B, & Reeves R (2004) Development and Pilot testing of the NHS Acute & Specialist Trust Young Patient Survey 2004,The Picker Institute Europe, Oxford • Randall D, Stammers P, & Brook G (2008) "Asking children how to make good children's nurses", Paediatric Nursing, vol. in press • Richie J and Lewis J (Eds)(2003) Qualitative Research in Practice: A guide for social science students and researcher, Sage, London • Sartain, S. A., Maxwell, M. J., Todd, P. J., Haycox, A. R., & Bundred, P. E. (2001), "Users' views on hospital and home care for acute illness in childhood", Health & Social Care in the Community, vol. 9(2) pp. 108-17.