How do fathers and mothers share care of their child’s long term condition with clinical teams?

1. How do fathers and mothers share care of their child’s long term condition with clinical teams? Research team: Dr Veronica Swallow, Dr Heather Lambert, Professor Sheila Santacroce, Mrs Ann Macfadyen Grateful thanks to : The parents who took part The British Renal Society (Grant 06-017) and The Children’s Kidney Unit Fund, Royal Victoria Infirmary, Newcastle

2. Background • Up to 30% of children and young people have a long term condition that needs regular treatments and special care • Children and young people are usually happier at home rather than in hospital • The Department of Health (DH) therefore, encourages clinical teams, whenever possible, to help parents give treatments and special care at home • But this means parents: “may perform the vast majority of care-giving, including tasks that are complex and demanding” (DH 2006)

3. Just some of the things parents may need to do for their child at home

4. Previous international research • Fathers’ opinions about their role in their child’s treatments and special care were often not invited • Sometimes fathers were invited but chose not to take part in the research • However, when fathers who were involved in their child’s treatments and special care also took part in research about this, the results suggest there were some benefits for the children

5. Our research at the University of Manchester • In our Programme of Research on Family Learning in Long Term Conditions we are trying to find out the best ways for clinical teams to help parents care for their child’s condition • This will help parents and professionals to keep children as well and as happy as possible

6. In our earlier research with families, parents said they sometimes find it hard to: • give the treatments/special care if it upsets or hurts their child • understand: • how to give treatments and special care • what each parents’ individual role in this was • fit the treatments and special care into busy family life • say if they find any of these things difficult in case the clinical team will think they are not good parents In addition: • fathers’ & mothers’ views sometimes differed within couples

7. Our earlier research with clinical teams found they sometimes wanted to know more about: • The types of teaching that work best for individual parents • How much information or support parents want • The types of information and support parents would like

8. To build on previous research and find out more about fathers’ and mothers’ individual views • The British Renal Society funded our Fathers and Mothers Study • We asked 14 couples (parents of 15 children with a long term kidney condition) to take part in tape-recorded research interviews • First we talked with each father and mother separately • Next we talked with each of the couples jointly

9. Our findings relate to five main areas of parents’ experiences • 1 Developing skills • 1.1 Clinical / technical • 1.2 Processing information • 1.3 Dealing with professionals • 1.4 Communicating with others • 1.5 Decision making • 5 Things that help • 5.1 Practical support • 5.2 Understanding • 5.3 Talking • 5.4 The child • 5.5 Seeing others worse off • 2 Impact on Life • 2.1 Changed opportunities • 2.2 Managing medical supplies • 2.3 Relationship changes • 2.4 View of the future • 2.5 Treatment side effect • 4 Mutual support • 4.1 Working together • 4.2 Active support • 4.3 Passive support • 4.4 Mutual awareness • 3 Coping • 3.1 Self • 3.2 Child

10. More on our findings: • with the exception of situations where one parent worked away from home, both said they were involved in giving treatments and special care at some time • no mothers said that they were left with the bulk of care giving • some unexpected findings from our research include:

11. Some (particularly mothers) gave vivid accounts of the physical and emotional effects on themselves of giving treatments and special care “I mean I used to sit there and my heart was going and I was hyperventilating and I was feeling sick…it was horrible … trying to control that and learning not to panic - I don’t think I ever actually mastered that” (Mother)

12. Some fathers commented on the effect that giving treatments and special care had on their relationship with the mother, and the family as a whole, one said: “I think the hardest thing for me was probably trying to come to terms with your reaction and dealing with you” (father to mother in joint interview)

13. There were some differences in the ways mothers and fathers processed information Fathers tended to want the bigger picture, as this quotation from the father of a child who had a kidney transplant shows: And generally took a long term view: It’s [son’s condition] a bomb ticking away in the background . . . you wonder what he’ll be like in 10, 15, 18 years (Father) “That is what I liked about it really, we seemed to know from day one what was going to happen with all the procedures, what would happen if it didn’t work”

14. Mothers wanted to understand what the impact would be on day to day life, the mother of this same child said “I still don’t think long term . . . he [child’s father] wonders more about what’s going to happen later; I’m more here and now” (Mother)

15. Some fathers said it helped to go quiet, have some space or ‘disengage’ from care-giving for a short time to think about what was happening. One father, for instance, said new information could be overwhelming: “I think the driving back home sometimes helped, just the drive, because I was on my own and I didn’t have information being thrown at me… either from what I saw or heard or people speaking to me about stuff,”

16. We asked about this in later, joint interviews; if the father said he found it helped to disengage, the interviewer asked: “What is it you are doing when you are quiet?” In one joint interview the mother said: “Oh I would like to know that!” The father explained: I don’t know, you just think about what could happen, what is happening, how long is it going to take for the results to come through?... I think there are a million things going through your head. You think of every possibility” This may indicate that mothers and fathers process the same thoughts in different ways. This warrants further investigation

17. Our review tells us more about: • the impact of long-term conditions on fathers’ ability to promote their child's well-being • factors influencing fathers’ involvement in health care 3. personal growth ⁄ beneficial effects for fathers 4. the impact of fathers’ involvement on family functioning 5. strategies that increase fathers’ participation in their child's health care and in research investigating fathers participation We also reviewed results from 29 other research studies that involved fathers and which took place in other countries

18. Helen and Graeme Walker are one couple who took part in our Fathers and Mothers study In the next 16 slides they explain some of their shared perspective of having a daughter with a long term condition

19. Alex Walker: 4th October 1990 • Alex was a perfectly healthy, normal baby • No complications during pregnancy • No problems with her birth

20. Alex through the ages! • Alex aged approx 5 months • Still no indication of kidney problems • She had a talent for projectile vomiting! • Doctors told us this was nothing to worry about

21. Toddlerhood – All is still well!

22. Infant school years – Still apparently OK

23. Alex aged 7 – Starting Junior School • Teachers comment that she lacked drive • We never suspected anything was wrong as she appeared normal at home • With hindsight, she was starting to look pale

24. Alex started to look yellow and became breathless • Doctors originally diagnosed asthma, but took blood samples because they also suspected diabetes due to Alex’s excessive thirst

25. February 2000 – Rushed to hospital with suspected end stage renal failure • Stabilised in Carlisle before being transferred to the RVI in Newcastle • Diagnosis confirmed. Hopes that this was a short term problem were dashed. • We did not realise the enormity of what was to come

26. Fitted with Tenchkoff catheter and started dialysis • Three operations to get the catheter working correctly took an emotional toll on the whole family. • Meanwhile we were taught how to do dialysis at home • A six week stay in hospital and we were competent but going home did not equate to going back to normality. It’s never normal.

27. Stable on dialysis but cloudy fluid on the first drain after a night off meant many late night trips across to Newcastle • Sleepovers with friends had to be planned well in advance • Dietary constraints were always at the front of our minds • We tried to make life as normal as possible. Halloween doesn’t stop just because of dialysis.

28. Physically, Alex’s condition was being managed, but the emotional side was something we weren’t prepared for • Alex would sometimes hide in the bathroom to avoid being connected up for dialysis. Early on, it had caused extreme pain. • As her parents, we found this emotionally draining and each had to find our own way of coping and supporting each other

29. 10 months of dialysis and routine was established • Alex did EPO injections herself, despite becoming quite phobic of needles • Calcium carbonate tablets with every meal could be an issue at times • She undertook her own catheter care and even put herself on dialysis with dad’s supervision (mum didn’t know!)

30. Transplant – 4th January 2001 • Alex had a kidney transplant after 11 months on dialysis • The practicalities of life returned to a more normal level • BUT… • There were still drugs • There were still doctors • There were still uncertainties about the future

31. Alex and little brother • Stephen was 6 when Alex was diagnosed • Kidney disease affects the whole family • Stephen stayed with grandparents when Alex was first admitted to hospital • When Alex had her transplant he came with us. We couldn’t be separated again.

32. Alex grows up! • Alex hasn’t let any of this hold her back • She is proud of her transplant scar and doesn’t regret anything that has happened • As parents, we have sometimes found it difficult to let Alex take responsibility for her own health, but that is what you have to do

33. The transition to Adult Services meant that we had to train a new team of health professionals to give us the information we need • We still ask her if she has taken her tablets, even though she never misses. It’s hard to stop!

34. Alex is now a student Children’s Nurse at Northumbria University and she works at the hospital where she had her transplant • Her kidney might not last forever. She doesn’t let it worry her • We do! • She still celebrates Halloween in style!

35. So what next? We are building on this research with two more studies which both include fathers and mothers: • Teaching parents to become home-based care-givers of children’s long-term kidney conditions: a mixed methods survey of Children’s Kidney Units in England, Scotland and Wales. Funded by Kids Kidney Research UK • The OPIS (On-line Parent Information and Support) project: Meeting mothers' and fathers' information and support needs for home-based management of childhood chronic kidney disease. Funded by NIHR Research for Patient Benefit Programme

36. References: DOH. National Service Framework for Renal Services: Working for Children and Young People. London 2006:14 Gavin, L. and T. Wysocki (2006). "Associations of paternal involvement in disease management with maternal and family outcomes in families of children with chronic illnesses." Journal of Pediatric Psychology 31(5): 481-489. Swallow V, Macfadyen A, Lambert H, Santacroce S. Fathers’ contributions to management of their children’s long-term medical conditions: a narrative review of the literature. Health Expectations. 2011; Online doi: 10.1111/j.1369-7625.2011.00674.x Swallow V, Lambert H, Santacroce S, Macfadyen A. Fathers and mothers developing skills in managing children’s long-term medical conditions :how do their qualitative accounts compare? Child: Care Health & Development. 2011, 37, 4, 512–523 doi:10.1111/j.1365-2214.2011.01219.x Macfadyen A, Swallow V, Santacroce S, Lambert H (2011) Involving fathers in research. Journal for Specialists in Pediatric Nursing doi: 10.1111/j.1744-6155.2011.00287.x Swallow V, Clarke C, Campbell S, Lambert H. Nurses as family learning brokers: shared management in childhood chronic kidney disease. Journal of Nursing and Healthcare of Chronic Illness. 2009;1:49-59 Swallow V, Lambert H, Clarke C, Campbell S, Jacoby A. Childhood chronic-kidney-disease: A longitudinal-qualitative study of families learning to share management early in the trajectory. Patient Education and Counseling. 2008;73:354-62 Swallow V. An exploration of mothers' and fathers' views of their identities in chronic-kidney-disease management: parents as students? Journal of Clinical Nursing. 2008;17:3177-86