Ethical Implications of teaching families to be home-based care-givers of long-term conditions.

Dr Veronica Swallow, Senior Lecturer in Children’s Nursing, School of Nursing, Midwifery & Social Work

Acknowledgements: The children, young people, families and staff who participated

Research collaborators:Dr Heather Lambert, Consultant Paediatric Nephrologist, Newcastle Hospitals,Dr Nick Webb, Consultant Paediatric Nephrologist, Royal Manchester Children’s Hospital (RMCH), Ms Trish Smith, Renal Nurse Specialist, RMCH, Professor Davina Allen, Research Director, Cardiff University, Professor Julian Williams, University of Manchester; Professor Charlotte Clarke ,Associate Dean, Northumbria University, Sheila Santacroce, Associate Professor, University of North Carolina at Chapel Hill, USA; Ann Macfadyen Principal Lecturer, Northumbria University, Tracey Forrestor, formerly Head of St Oswald’s Short-Break Service; Roger Olley Assistant Director, Fatherhood North-East; Steve Campbell formerly Northumbria University,

Funders: The Burdett Trust for Nursing, The British Renal Society, Newcastle Hospitals Research Fund, The

Florence Nightingale Foundation & Kids Kidney Research UK

Aims of this paper are to consider:

• practical implications for children, young people and families of involvement in home-based care-giving for long-term conditions

• ethical implications of their respective contributions to care-giving

• challenges for professionals trying to reconcile differences between individuals’ needs

Three qualitative studiesof family management

1 To investigate the ways children and families learned to manage chronic conditions

2 To explore families’ views of a Short-Break service for children and young people with life-threatening conditions

3 To explore and compare mothers’ and fathers’ roles in condition management

Reference: Thome, S. (1998). Ethical and Representational Issues in Qualitative Secondary Analysis. Qual Health Res, 8(4), 547-555.

Principle-based approach to ethicsBeneficence• ‘do good’• prevent or remove harm

Non-maleficence• ‘do no harm’

…distinguishing between these two seemingly clear opposites is not necessarily easy in individual cases (Springer 2005:218)

Justice• fairness• individual/community• equal distribution

risks/benefits

Autonomy• self-governance• freedom to choose• decision makers

References:•Beauchamp T L, Childress J F. (2001), Principles of Biomedical Ethics, 5th edn. Oxford University Press•Springer, D. (2005). End of life stories: crossing disciplinary boundaries. New York: Springer.•Girling, J. (2007). Ethics and management of health and social care. In A. Leathard & S. McLaren (Eds.), Ethics: Contemporary challenges in health and social care. Bristol: Policy Press.•Seedhouse, D. (1988). Ethics: The heart of healthcare. Chichester: Wiley•Baines, P. (2008). Medical ethics for children: applying the four principles to paediatrics. Journal of Medical Ethics, 34, 141-145..•Campion-smith, C. (2007). Ethics and Primary health care. In A. Leathard & S. McLaren (Eds.), Ethics: Contemporary challenges in health and spcial care. Bristol: Policy Press.

Data obtained through:Study 1

• 47 semi-structured interviews with children/parents• 22 post-interview case-note reviews• 4 family learning diaries

Study 2 • 2 focus groups with young people & 4 with staff• Interviews/e mail with 5 children able to communicate• 3 focus groups/10 interviews with parents

Study 3• 28 individual interviews with mothers and fathers • 14 joint interviews

References:Swallow, V., Macfadyen, A., Lambert, H., Santacroce, S., & Olley, R. (2009). Fathers and mothers of children with long term kidney conditions: a qualitative study of their contributions to their child's healthcare (Nephrology and clinical genetics joint session). Arch Dis Child, 94(Suppl_1), A34-37.Swallow, V., Clarke, C., Campbell, S., & Lambert, H. (2009). Nurses as family learning brokers: shared management in childhood chronic kidney disease. Journal of Nursing and Healthcare of Chronic Illness, 1, 49-59Swallow, V. (2008). An exploration of mothers' and fathers' views of their identities in chronic-kidney-disease management: parents as students? Journal of Clinical Nursing, 17(23), 3177-3186.Swallow, V., Lambert, H., Clarke, C., Campbell, S., & Jacoby, A. (2008). Childhood chronic-kidney-disease: A longitudinal-qualitative study of families learning to share management early in the trajectory. Patient Education and Counseling, 73, 354-362.Swallow, V., Forrester, T., Macfadyen, A., & English, C. (2006). Short Breaks-Big Impact: evaluation of a short break service for children and young people with life limiting illnesses. Newcastle upon Tyne: Northumbria University.

Beneficence

• To ‘do good’ for the affected child seems straightforward

• What about other children in the family?• What about the parents themselves?

Beneficence: Meet Carl & his mum“…since we brought him home our house has had to be turned upside down – his little sister

had to give up her bedroom so he could have the bigger one, they needed to install a wash hand basin and we need room for his PD [peritoneal

dialysis] stuff, his feeding equipment and everything ..his sister has had to start talking to

a psychologist about the effect of all this ‘hospital at home’ –she was always such a happy

well adjusted little girl before (Mum]

Beneficence: Physiological effects on parents

Yes, I mean I used to sit here and my heart was going, I was hyperventilating and feeling sick and it was horrible, (M)

I was so frightened I would do anything wrong you know ... worried in case I caused infections or anything (M)

Non-maleficence

Professionals’ support of and interest in a child and their family is a powerful therapeutic tool and…” withdrawal of this approach can be seen as an act of maleficence”

Campion-Smith (2007: 74)

Non-maleficence: Meet Lucy & her Mum

“ once they [nurses ] saw I could

manage her tube, injections and everything ok they just fell away really

Non-maleficence:Learning to restrain children during procedures was referred to, spontaneously by one

mother describing flushing the central-line:…when you’re not trained in using needles/syringes… initially very difficult, we used to draw straws… “you do it” [mother to father] then,…”no you put it in and I’ll hold him” [father to mother]

However, several fathers spontaneously talked about ‘holding’ their child for procedures such as: urine collection, vene-puncture; BP measuring; inserting NG tubes; putting cream [local anaesthetic] on and giving medicines, all believing this to be their personal responsibility, for example: I try to keep him calm for bloods (Father)

Justice

Time and attention of practitioners is a limited resource that will be allocated fairly in an ethical system

Communication with those from different backgrounds to the practitioner and those with impairments may be more difficult (Campion-Smith, 2007)

Justice: Emotional and physiological effects on siblings and parents

“ …we all want the best for her but can see how the worry and uncertainty is pulling our mum and dad apart ..we think the doctors and nurses ought to spend more time helping them to sort their differences out about how it’s best to look after her treatment and so on…”

“ Yes but the main thing is, you know, that Dad blames himself for [sister] having all these kidney troubles. someone told him it runs in the family and he knows uncle [name of father’s brother] had a kidney transplant years ago so Dad thinks it all runs through his side if the family…Dad is making himself ill with all this worry and Mum is exhausted just making sure her [sister] treatments are given when she is out with her friends, and making sure she doesn’t drink [alcohol] like her friends (19yr old brother)

Justice:

M : It was horrible, and I think trying to control that and learning not to panic – I don’t think I ever actually mastered that, to be honest, I don’t think I had mastered it by the time she had got her transplant, had I?

F : No, you never got on top of it. M : No.F : And I think the hardest thing for me was probably

trying to come to terms with your reaction with it and dealing with you (Joint M&F)

Autonomy

• Autonomy becomes more problematic when choices are made on behalf of another such as a child (Campion-Smith, 2007)

• …a child’s judgement may be overruled by others not because they lack the ability to understand…but because others believe they have made an incorrect assessment of the consequences for themselves (Baines, 2008)

Autonomy: Meet Lizzie

I make sure my friends know what can go

wrong -in case I’m ill when we’re out…so

they know what to do for me

Autonomy:..so she can confidently come and go and know

everything that can happen. after all she’s

15 now [mother]!

..no,no I think she’s far too young to get it all at

once ..we should protect her from some

of it [father]

Autonomy: Meet Sammy

His main focus was on wheelchairs-it was the key to his independence…. keen to use a powered chair sooner rather than later

Choice“ I’d spend most of my weekend in bed if I didn’t come here [Short-Break Service]!”

Physical environment“ When first I came I said I wanted to live here!”

I don’t want him using a powered chair until absolutely necessary…(Mother)

Conclusions• Individual family members may be affected in

different ways by the consequences of home-based care giving

• The chronically ill child’s needs and those of parents and siblings are often at odds with each other

• Should we be more open with families about consequences of care-giving ?

• Would increased openness by professionals allow family carers to be more open about their doubts/concerns?

Our current research:

• “Teaching parents to become home-based care-givers of children’s long-term kidney conditions: a mixed methods study in all UK Children’s Kidney Units”, Funded by Kids Kidney Research UK, adopted by Medicines for Children Research Network (MCRN)

• “Assessing children’s views on salivary versus blood sampling for therapeutic drug monitoring”. Funded by NHS R&D Pump Priming Grant – Central Manchester & Manchester Children’s Hospital

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