practitioner communication: the psychological impact on families

Practitioner communication: The psychological impact on families

Fleur-Michelle CoiffaitSpecialist Clinical Psychology Practitioner | NHS Lothian

CAMHS Learning Disability Service & South East Scotland Clinical Genetics Service Doctoral Researcher | University of Edinburgh

Thursday, 27 September 2012

OverviewWhat are we talking about?

What do families say?

What does research say? Why does it happen?

What can practitioners do?

Summary Questions

Setting the context

What does policy say?


Setting the context

Clinical psychologists provide holistic support that:

Promotes children’s physical and emotional wellbeing and development;

Enables them to access educational, social and leisure opportunities;

Helps the systems around the child to understand their needs and contribute to the above.

We do this through direct work with children and families and indirect work with wider systems.

Psychological assessment Formulation

Psychological intervention

Evaluation

Research

Consultation and advice

Co-ordination and communication of

information

Supervision

Training


What are we talking about?

EmotionsHow that makes you

feel

BehaviourWhat you do

How you respond

Changes in bodyPhysiological

reactions

ThoughtsHow you interpret the

situationWhat goes through your

mind

SituationRelationships

Other life events

Past experiencesInflu

ences of so

ciety

and cultu

re



Emotional impact

Shock

Surprise

Trauma

Fear

Panic

AnxietyWorry Dread

Guilt

Relief

Sadness

Loss

AngerFrustration

Disbelief

Overwhelmed

Numbness

Detachment

…plus many more and often a mixture



Cognitive impact Information taken in

How we make sense of the

situation

Expectations

Hopes Ambitions

Dreams Fears

Concerns Worries

What this means about us

Beliefs about others

Attitudes about the world

Beliefs about asking for help

Beliefs about professionals and

services

Values


What does policy say?

Engagement and empowerment of children and familiesUsing universal services for prevention, early intervention Services that meet needs of children and families


What do families say?

“Its always better to just know the truth.”

“They said ‘it was just one of those things’ - what does that

even mean? Why did it happen to my child?”

“Looking back, I wish they’d just been honest. I’m not stupid - I knew something

wasn’t right, it was obvious.”

“She asked me if I was ok and that’s when I let it all out...

throughout all this no-one had asked me that and I hadn’t

even thought about it, and I wasn’t.”


What do families say?“It’s stayed with me - I can remember the exact date, what was in the room. I

remember that feeling of devastation as if it were

yesterday.”

“I thought that because they did a test for it, that it could

be cured. Nobody actually said there was no cure.”

“...and I just thought, so it’s genetic and it comes from me, so that means I’ve given this to my son, this is my fault”

“They said it was normal to feel like this and so I started to accept that it was ok to need some support and I

wasn’t failing by finding this hard.”


What does research say?

• Families want honesty• Witholding of information can be unhelpful• Providing false hope also unhelpful• Want emotion accompanying information• Body language important

Meert et al. (2008)


From: http://www.scotland.gov.uk/Resource/Img/207951/0061225.jpg



• How information is provided is important:• Attentiveness to family’s information needs• Comprehensiveness of information• Pace of providing information • Complexity of vocabulary

Meert et al. (2008)



• Desired and actual experiences differ • Be caring, ask how they feel• Allow more opportunity for families to talk and share their own feelings

• Provide information they want, confidently • Link to other families where possible

Sharp et al. (1992); Strauss et al. (1995)


Why does it happen?• Apprehension and anxiety on part of family

• Belief that will be told all they need to know

• Unless invited, rarely ask questions

• Lack of knowledge

• Up to 80% of information given in

consultation forgotten immediately

• Maintain ‘good customer’ roleJenkins et al. (2001); Kessels (2003); Leydon et al. (2000);

Luker et al. (1995); Faulkner and Maguire (1995)


Why does it happen?• Practitioner vs family perceptions

• Lack of attunement to individual needs

• One size fits all approach

• Trying to help by encouraging hope

• Not being 100% sure

• Avoiding emotive discussions

• Stress, pile-up of demands, other pressures

• Inadequate supervision/reflectionFaulkner and Maguire (1995)


Why does it happen?• Feeling unprepared when faced with emotion

• Not knowing what to say

• Not wanting to make the situation worse

• Lacking skills/knowledge to know how to help

• Not being able to solve/cure the problem

• Not being able to reduce/take away the pain

• Feeling inadequate, powerless, helplessNichols (1993)


What can practitioners do?• Be empathetic – ask what the family are feeling or thinking, try and understand the issues raised from their perspective.

• Adopt a non-judgmental stance – accept the family’s opinions/values without evaluating.

• Be genuine – be yourself with the child and family and avoid playing out a ‘role’.

• Acknowledge difficult situations and feelingsNHS Education Scotland (2011)


What can practitioners do?• Ask families what they think they need • Seek supervision (formal or informal) and opportunities to debrief/reflect with colleagues

• Seek training and learning opportunities to develop your skills/practice if required

• Use clinical psychology for advice/consultation• Think about your own values, reasons for career• Look after yourself or you’re no good to anyone!


Useful resources

Local NHS Paediatric Psychology Serviceand/or Child Learning Disability Service


Summary• Communication affects outcomes

• Clear and caring communication

• Meeting the family/individual’s information needs

• Acknowledgement and expression of emotion

• Open the proverbial can of worms!

• Awareness of what we bring to the situation

• We can’t always fix it, but we can be there


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ReferencesDavis, H. (1993). Counselling parent of children with a chronic illness or disability. Leicester: British Psychological Society.Edwards, M. & Titman, P. (2010). Promoting psychological well-being in children with acute and chronic illness. London: Jessica Kingsley.Faulkner, A. 7 Maguire, P. (1995). Talking to cancer patients and their relatives. Oxford: Oxford Medical Publications.Fitton, P. (1994). Listen to me: Communicating the needs of people with profound intellectual and multiple disabilities. London: Jessica Kingsley.Jenkins, V., Fallowfield, L. & Saul, J. (2001). Information needs of patients with cancer: Results from a large study in UK cancer centres. British

Journal of Cancer, 84, 48-51. Kessels, R.P.C. (2003). Patients’ memory for medical information. Journal of the Royal Society of Medicine, 96(5), 219-222.Leydon, G.M., Boulton, M., Moynihan, C., Jones, A., Mossman, J., Boudioni, M., & McPherson, K. (2000). Cancer patients’ information needs and

information seeking behaviour: In depth interview study. British Medical Journal, 320(7239), 909-913.Luker, K.A., Beaver, K., Leinster, S.J., Glynn Owens, R., Degner, L.F., & Sloan, J.A. (1995). The information needs of women newly diagnosed with

breast cancer. Journal of Advanced Nursing, 22, 13-141. Meert, K.L., Eggly, S., Pollack, M., Anand, K.J., Zimmerman, J., Carcillo, J., Newth. C.J., Dean, J.M., Willson, D.F., & Nicholson, C. (2008). Parents’

perspectives on physician -parent communication near the time of a child’s death in the pediatric intensive care unit. Pedatric Critical Care Medicine, 9(1), 2-7.

Nichols, K.A. (1993). Psychological care in physical illness (2nd Edition). London: Chapman and Hall.Sharp, M.C., Strauss, R.P., Lorch, S.C. (1992). Communicating medical bad news: Parents’ experiences and preferences. Journal of Pediatrics, 121

(4), 539-546.Strauss, R.P., Sharp, M.C., Lorch, S.C., & Kachalla, B. (1995). Physicians and communication of “bad news”: Parent experiences of being informed of

their child’s cleft lip and/or palate. Pediatrics, 96(1), 82-89.

Building partnerships between parents and practitioners document: www.ncca.ie/en/Curriculum_and_Assessment/Parents/Early_Childhood/Aistear_Partnership_guidelines.pdf

How do you want me to talk to you? and How does it feel? Videos/DVDs and resources: www.cen.scot.nhs.uk/how-do-you-want-me-to-talk-to-youPsychosocial interventions for improving adherence, self-management and adjustment to physical health conditions in children and young people

resource: www.nes.scot.nhs.uk/education-and-training/by-discipline/psychology/multiprofessional-psychology/paediatric-psychology-psychosocial-

interventions.aspx


practitioner communication: the psychological impact on families

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