University of Huddersfield

Tokenism or true partnership: to what

extent is parental involvement in the

child’s acute pain care facilitated by nurses

within a culture of family centred care in general

children’s wards?Jackie Vasey

• Dr George Armstrong 1717-1789- instigated ambulatory care, and believed in families caring for their children at home. He stated that to separate a child from their families would “break their hearts immediately”. (Miles, 1986 p 83)

• But that is exactly what happened when children’s hospitals/wards began to open, with very limited or no parental visiting. In 1951, 150 hospitals completely banned visiting for parents (Robertson, 1989)

• Nurse felt that parental presence was detrimental to the child settling in and a hindrance to the nurse! (Glasper and Richardson, 2006: Jolley, 2008)

Historical perspective- the early years

Who would dare to argue with this matron?

Historical perspective- late 1900’s

• Bowlby and Ainsworth (Betherton, 1992)

• Robertson- stages of separation anxiety (Robertson, 1970)

• Platt Report (Committee of the Central Health Services Council, 1959)

• NAWCH/ASC (ASC, 2002)

Stages of separation anxiety during maternal deprivation

• Protest

• Despair

• Denial/ detachment

(Robertson, 1970)

The 2 year old who went to hospitalParental involvement in this era-

parents were still trying to get through the door!

Historical perspective- late 1900’s

• Concept of family centred care emerged from the 1950’s following the work of Bowlby and Robertson (Bowlby, 1953: Robertson, 1989: Smith et al, 2002)

• The Platt report resulted in slow adoption of open visiting (Committee of the Central Health Services Council, 1959)

• Other reports followed- Court report (Department of Health and Social Security, 1976), Welfare of children and young people in hospital (DH, 1991), Audit Commission Report (1993), The Patient’s Charter (DH, 1996)

• Some reluctance by nurses who felt parental presence was not a positive move.

• Questions were raised about this “cherished policy of involvement”. FCC has been argued to be ill-defined (Franck & Callery, 2004).

• Darbyshire identified inconsistencies in how the meaning of family involvement is interpreted, resulting in parental involvement occurring more at the level of professional ideology that in everyday practice (Darbyshire, 1994)

• Callery described it as “ad hoc and unpredictable” and highlighted the financial, social and personal costs to parents (Callery, 1997)

• Shields et al (2008) argues that it’s effectiveness has not been measured.

Started to let mums in

And dads too!

Even both parents at the same time!

Family centred care continuum

No Involvement

Involvement Participation Partnership Parent-led

Nurse-led Nurse-led Nurse-led Equal status Parent-led

Smith et al (2002)

“Family centred care is an approach to the planning, delivery and evaluation of healthcare that is governed by mutually beneficial partnerships between healthcare providers, patients and

families” (Shields et al 2006, p. 1318)

Current perspectives regarding pain care-

• Abundance of literature regarding children’s pain management emerged in the 1990’s (Helgadottir, 2000; Cunliffe & Roberts, 2004; Gold et al, 2006 Johnstone et al, 2007; Reaney, 2007)

• However, few studies explicitly explored parental involvement and the most recent appears to be in 2002. (Woodgate & Kristjanson, 1996: Simons et al, 2001: Simons & Roberson, 2002)

• RCN/RCPCH developed guidelines that advocate the involvement of parents (Royal College of Paediatrics and Child Health, 2004: Royal College of Nursing, 2009)

• NSF’s standards 4.28-4.33- whilst this document sets standards in response to the Kennedy report and attributes the lack of partnership with parents as a contributory factor in the events at Bristol- it does not specifically include parental involvement in a child’s pain care in the pain management section (DH, 2003).

• However, the parent version states “you should be able to discuss with the staff what more they could do to help with your child if he or she is in pain” (DH, 2003 p 15).

• Also, whilst the Care Quality Commission looked at how the standards had been met in relation to aspects of pain management it did not specifically audit parental involvement- perhaps this reflects the relative importance placed on this

• Clayton (2000) states that the culture in child nursing, is one where nurses would not contemplate using an approach to care that did not involve families.

How may parents be involved in pain care?

• Provide a pain history• Assist with the assessment of the child’s pain• Assist in the selection of the most appropriate pain control methods• Administer pharmacological and non- pharmacological pain relief• Alert the nurse to any adverse effects of the treatment• Evaluate it’s effectiveness• Continue pain care at home

Positive and less positive aspects of FCC for the parents/child

Positive aspects of FCC for the parents/child

Less positive aspects of FCC for the parents/child

Child has security of a consistent and stable parent present who assists with their needs- as normal (Hutchfield, 1999). Greater parental understanding of and participation in decisions regarding their child’s care (MacKean et al, 2005)More control over what happens to their child (Clayton, 2000)Mutual respect between nurses/parents (Hutchfield, 1999: Smith & Coleman, 2010).More prepared to care for the child at home on discharge (Smith &Coleman, 2010)Minimises effects of hospitalisation (Hutchfield, 1999).Gate control theory- parental presence reduces anxiety for the child (Twycross et al, 1998)Parents may pick up on their child’s pain behavioural cues, as they know them best (Simons et al, 2001: Gimbler-Berglund et al, 2008)Child more likely to tell parent if they have pain (Simons et al, 2001)Parents are a true advocate for the child (MacKean et al, 2005)Empowerment may increase parent confidence in themselves as care-givers (MacKean et al, 2005)

Increasing anxiety and stress for parents (Shields et al, 2008).Captive mothers (Meadow, 1969) Parent trap- parents prisoners by expectation (Darbyshire, 1994)Nurses are in control of their involvement (Callery & Smith, 1991: Clayton, 2000)Parents have to learn in minutes/hours what nurses take years to learn (Valentine, 1998)Information overload or lack of information for parents (Hutchfield, 1999: Shields et al, 2008)Parents may find it a financial, social and/or emotional burden (Callery, 1997)Is fully informed, fully burdened? (Callery, 1997)Parents may have conflicting demands- for example work/siblings/marriages (Callery, 1997: Clayton, 2000))If parents indicate they want to be involved- they may feel it becomes an expectation. Feel unable to take a break (Smith et al, 2002).Nurses hold power and select which roles to involve parents in (Nethercott, 1993)Guilt- bad parents if they are not involved (Nethercott, 1993)Parenting in public- Human Rights Act (DH, 1998) “ the right to respect for private family life”.Older children/young people may not want their parents to be involved (Franck & Callery, 2004)

Captive mother caught in the parent trap?

Positive and less positive aspects of FCC for the nurse

Positive aspects for the nurse Less positive aspects for the nurse

Can work with parents to minimise the negative effects of hospitalisation (DH, 2003) Increased job satisfaction (Smith et al, 2002)Encourages communication with families (MacKean, 2005)Children’s nurses taught FCC and pain care from pre-registration- so not unexpected (Nethercott, 1993: Twycross, 2000).

Lack of clarity about the concept and implementation of FCC (Callery, 1997: MacKean, 2005)Blanket approach- assuming parents are willing to be involved (Callery, 1997: Shield et al, 2006).Perceived increase in workload- teaching parents nursing skills (Simons et al, 2001)Shorter hospital stays result in limited time to assess desired parental level of involvement (Darbyshire, 1994: Corlett & Twycross, 2006)May feel threatened by expert parents (Simons & Roberson, 2002)Nurses may feel they have “failed” if parents are unable/unwilling to be involved (Smith et al, 2002)Lack of knowledge and skills regarding pain management may make nurses feel vulnerable/less likely to involve parents (Manworran, 2007, Zisk et al, 2007)Lack of understanding of FCC between nurses and other nurses and other professionals (Clayton, 2000)Concerns about accountability if tasks are delegated to parents (Smith & Coleman, 2010)Nurses may feel de-skilled. Anecdotally our students report that “they can’t get near children” to develop their skills when parents presentRequires the nurse to be able to judge when to initiate parent involvement (Lee, 1999: Lee, 2004: Smith et al, 2002)

Safeguarding parents

“Nurses must be trained in how to share care with a resident mother and how to use her as

an efficient and willing source of labour” (Meadow, 1969, p 366)

These are the questions I hope to answer.

• Are parents involved in their child’s acute pain care?

• If so, to what extent is parental involvement implemented effectively?

• What influences involvement?• Should they be involved?• If so, how can this be better

facilitated?

So how do I intend going about it?

• Approach- Ethnography• Method- Non-participant observation with

potential follow up semi-structured interviews with nurses, parents and children

• Data analysis- possibly content analysis

References

• ASC (2002) Online. Available at: http://www.action forsickchildren.org/about_history.html. • Audit Commission (1993) Children first: A study of Hospital Services. HMSO: London• Bowlby J. (1953) Child Care and the Growth of Love. Penguin: Harmondsworth• Bretherton,I. (1992) The origins of attachment theory: John Bowlby and Mary Ainsworth. Developmental Pscyhology. 28, pp. 759-

775• Callery P. & Smith L. (1991) A Study of the Role Negotiation Between Nurses and Parents of Hospitalised Children. Journal of

Advanced Nursing. 16, 772-781• Callery, P. (1997) Paying to participate: financial, social and personal costs to parents of involvement in their child’s care in

hospital. Journal of Advanced Nursing. 25, pp. 746-752• Clayton, M. (2000) ‘Health and social; policy: Influences on family centred care’. Paediatric Nursing 12, (8) pp. 31-33• Committee of the Central Health Services Council (1959) The Welfare of Children in Hospital, Platt Report. London: HMSO• Corlett, J., & Twycross, A., (2006) Negotiation of parental roles within family-centred care: A review of the research. Journal of

Clinical Nursing. 15, pp.1308-1316• Cunliffe, M., & Roberts, A,S. (2004) ‘Pain Management in Children’. Current Anaesthesia & Critical Care, 5, (4-5) pp. 272-283.• Darbyshire, P. (1994) Living with a sick child in hospital: The experiences of parents and children. London: Chapman & Hall.• DEPARTMENT OF HEALTH (1996) The Patient’s Charter- Services for children and young people. London: HMSO• Human Rights Act (1988) London: HMSO• DEPARTMENT OF HEALTH (1991) Welfare of Children and Young People in Hospital. HMSO: London• DEPARTMENT OF HEALTH. (2003) The National Service Framework for Children. HMSO: London• DEPARTMENT OF HEALTH AND SOCIAL SECURITY. (1976) Fit for the Future (The Court Report) London:HMSO.• Franck, L.S., & Callery, P., (2004) Re-thinking family-centred care across the continuum of children’s healthcare. Child: Care,

Health and Development. 30, (3) pp. 265-277

References

• Gimbler-Berglund, I., Ljusegren, G., & Enskar, K., (2008) Factors influencing pain management in children. Paediatric Nursing. 20, (10) pp. 21-24

• Glasper, A and Richardson, J (2006) A Textbook of Children’s and Young People’s Nursing. London: Churchill Livingstone Elsevier

• Gold, J. I., Townsend, J., Jury, D.L., Kant, A. J., Gallardo, C.C., & Joseph, M.H. (2006) ‘Current trends in pediatric pain management: from preoperative to the postoperative bedside and beyond’. Pediatric Anaesthesia. 25, (3) pp. 159-171

• Helgadottir, H. L. (2000) ‘Pain management practices in children after surgery’. Journal of Pediatric Nursing, 15, pp. 334-340• Hutchfield, K. (1999) Family- Centred care: a concept analysis. Journal of Advanced Nursing. 29, pp. 1178-1187• Johnston, C.C., Gagnon, A., Rennick, J., Rosmus, C., Patenaude. H., Ellis, J., Shapiro, C., Filion, F., Ritchie, J., & Byron, J. (2007)

‘One-on-one coaching to improve pain assessment and management practices of pediatric nurses’. Journal of Pediatric Nursing, 22, (6) pp. 467- 478

• Jolley, J. (2008) Now and then: The enlightened sixties. Paediatric Nursing. 20 (2), pp. 12• Kennedy I. (2001) The report of the public health inquiry into children’s heart surgery at the Bristol Royal Infirmary 1984-1995 .

London: The Stationary Office• Lee, P., (1999) Partnership in care: a critical exploration of how this may be applied to children attending the accident and

emergency department. Accident and Emergency Nursing. 7, 119-123.• Lee P. (2004) Family Involvement: are we asking too much? Paediatric Nursing. 16 (10) 37-41 • MacKean, G.L., Thurston, W.E., & Scott, C.M., (2005) Bridging the divide between families and health professionals’ perspectives

on family centred care. Health Expectations. 8, pp. 74-85• Manworran, R.C.B. (2007) ‘It’s time to relieve children’s pain’ JSPN. 12, (3) pp.196-198• Meadow, S.R. (1969) The Captive Mother. Archive of Diseases in Childhood. 44 (3) 362-367• Miles, I. (1986) The emergence of sick children’s nursing. Part 1: Sick children’s nursing before the turn of the century. Nurse

Education Today. 6 (2), pp. 82-87.• Nethercott, S. (1993) ‘A concept for all the family: Family centred care: A concept analysis’. Professional Nurse. September, pp.

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References

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Institute.•  Royal College of Paediatrics and Child Health (2004) Recognition and assessment of acute pain in children. London: RCPCH • Shields, L., Pratt, J., & Hunter, J. (2006) ‘Family centred care: a review of qualitative studies’. Journal of Clinical Nursing. 15, pp. 1317-

1323• Shields, L., Pratt, J., Davis, L,. & Hunter, L. (2008) Family-centred care for children in hospital. Cochrane database of systematic

reviews 2008, 1, Art no.: CD004811.DOI:10. 1002/14651858.CD004811.pub2• Simons J., Franck L. & Roberson E. (2001) ‘Parent involvement in Children’s Pain Care: Views of Parents and Nurses’. Journal of

Advanced Nursing. 36 (4), pp. 591-599• Simons, J., & Roberson, E. (2002) ‘Poor Communication and Knowledge Deficits: Obstacles to Effective Management of Children’s

Postoperative Pain’. Journal of Advanced Nursing. 40 (1), pp.78-86• Smith L., Coleman V. & Bradshaw M. (2002) Family Centred Care: Concept, Theory and Practice. Palgrave Macmillan: Hampshire• Smith, L., & Coleman, V. (2010) Child and family centred healthcare: Concept, theory and practice. 2nd Ed. Hampshire: Palgrave

Macmillan• Twycross, A. (2000) Education about pain: a neglected area. Nurse Education Today. 20, pp.244-253• Unsworth, V., Franck,L., & Choonara, I. (2007) ‘Parental Assessment and Management of Children’s Postoperative Pain ; A

Randomised Clinical Trial,. Journal of Child Health Care. 11 (3), pp.186- 194.•  Valentine, F., (1998) Empowerment: Family-centred care. Paediatric Nursing. 10 (1), PP.24-27• Woodgate, R., & Kristjanson, L.J., (1996) A young child’s pain: How parents and nurses ‘take care’. International Journal of Nursing

Studies. 33, pp. 271-284• Zisk, R,Y., Grey, M., Medoff-Cooper, B., & Kain, Z,N. (2007) ‘Accuracy of Parental-Global-Impression of Children’s Acute Pain’. Pain

Management Nursing. 8 (2), pp. 72-76 •  http://www.cqc.org.uk/