Transcript How do clinical teams help parents to share care of

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
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)
Just some of the things parents may need to do for
their child at home
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
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
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
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
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 taperecorded research interviews
– First we talked with each father and mother
separately
– Next we talked with each of the couples jointly
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
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
3 Coping
3.1 Self
3.2 Child
5 Things that help
5.1 Practical support
5.2 Understanding
5.3 Talking
5.4 The child
5.5 Seeing others worse off
4 Mutual support
4.1 Working together
4.2 Active support
4.3 Passive support
4.4 Mutual awareness
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:
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)
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)
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:
“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”
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)
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)
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,”
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
We also reviewed
results from 29 other
research studies that
involved fathers and
which took place in
other countries
Our review tells us more about:
1. the impact of long-term conditions on
fathers’ ability to promote their
child's well-being
2. 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
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
Alex Walker: 4th October 1990
•Alex was a perfectly healthy, normal baby
•No complications during pregnancy
•No problems with her birth
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
Toddlerhood – All is still well!
Infant school years – Still apparently OK
•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
•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
•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
•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.
•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.
•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
•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!)
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
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.
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
•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!
•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!
So what next?
We are building on this research with two more studies which both include
fathers and mothers:
1.
Teaching parents to become home-based care-givers of children’s longterm kidney conditions: a mixed methods survey of Children’s Kidney
Units in England, Scotland and Wales.
Funded by Kids Kidney Research UK
2.
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
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