Carers of Head and Neck Cancer Patients: Who Cares

1
Carers of Head and Neck Cancer Patients Who
Cares?

• Laura Hodges¹
• Gerry Humphris²

¹The University of Manchester ²The University
of St Andrews
2
Some Background

• Emphasis in Psycho-Oncology on Patient response
• Growing research interest Government focus on
  the family
• Cancer as a biopsychosocial problem A Family
  Affair

3
The Carer

• the person who has supported you through your
  illness
• Dual role Caring for Caring about
• Family Systems Theory
• Carers as equivalent members of the health-care
  team

4
PhD Hodges, L. (2006)

• Meta-Analysis
• Cancer Patient Carer Psycholgical Distress
• CARE-FOR
• Prospective survey study of HNC Patient-Carer
  dyads
• Diary Study
• Small-n pilot study of HNC Patient-Carer dyads

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1. Meta-Analysis¹

• Questions
• Are patients more distressed than carers?
• Is there a mutuality in response?

¹ Hodges, L., Humphris, G. and Macfarlane, G.
(2005) A meta-analytic investigation of the
relationship between the psychological distress
levels of cancer patients and their carers.
Social Science and Medicine. Vol 60 (1)1-12..
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Meta-analysis Search Strategy

• Databases (PSYCInfo, Medline CANCERLIT)
• Dates 1966 2003
• Keywords
• Cancer and Patient, and Psychological
  Distress
• Carer or Caregiver or Family or Spouse or
  Partner
• Inclusion Criteria
• Provides statistics uses same assessment measure

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Meta-Analysis Search Results

• 21 published papers
• No studies from the U.K.
• Majority cross-sectional
• Often mixed gender mixed cancer type
• Range of assessment measures of PD
• MA 1 10 correlation coefficients
• MA 2 30 mean s.d.s

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Meta-Analysis Findings

• MA 1 Significant positive relationship
• MA 2 Distress levels did not significantly
  differ between patient and carer groups

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Influence of time since diagnosisMeta-Analysis 1
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Carer Responses to Illness

• Openness
• the encouragement of emotional expression
• Value of open and closed communication?
• Emotional Over-Involvement (EOI)
• Excessive emotional response, self-sacrifice, and
  over-protection.

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2. CARE-FOR Study

• Aim
• To construct a predictive model of patient and
  carer psychological distress
• Method
• Prospective survey study
• Multi-centre Manchester, Newcastle Edinburgh
• Consecutive new patients
• 2 timepoints 3- and 6-months post-diagnosis

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Method (continued.)

• Survey (Patient Carer Interviews)
• Basic demographic medical information
• Psychological Distress (HADS)
• Openness to Discuss Cancer in the Nuclear Family
  Scale (ODCF)
• The Family Questionnaire (EOI)
• Sample
• 101 patient-carer dyads
• Patients 71.6 male, mean age 58.6 years, 50
  oral cancer.
• Carers 72.5 female, mean age 56.26 years, 85.3
  patients partner.

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CARE-FOR Findings Patient PD
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CARE-FOR Findings Patient PD
Age Pt
.20
-.10
Openness
-.39
Psychological Distress Pt T2
Psychological Distress Pt T1
.83
.40
Psychological Distress Ca
-.32
Age Ca
15
CARE-FOR Findings Patient PD
Age Pt
.20
-.10
Openness
-.39
Psychological Distress Pt T2
Psychological Distress Pt T1
.83
.40
Psychological Distress Ca
-.32
Age Ca
16
CARE-FOR Findings Carer PD
17
CARE-FOR Findings Carer PD
EOI Ca
.23
.67
Openness Ca
-.27
Psychological Distress Ca T2
Psychological Distress Ca T1
.63
.16
Psychological Distress Pt
-.17
Openness Pt
18
CARE-FOR Findings Carer PD
EOI Ca
.23
.67
Openness Ca
-.27
Psychological Distress Ca T2
Psychological Distress Ca T1
.63
.16
Psychological Distress Pt
-.17
Openness Pt
19
CARE-FOR Findings Carer PD
EOI Ca
.23
.67
Openness Ca
-.27
Psychological Distress Ca T2
Psychological Distress Ca T1
.63
.16
Psychological Distress Pt
-.17
Openness Pt
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What does this mean?

• Patient Carer PD influenced by common factors
• Earlier levels of distress
• Partners distress level
• Subjective perception of family openness
• Carer PD also predicted by
• Self-rated EOI
• Partners perception of family openness

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Implications?

• Promote open communication
• Look at Carer EOI
• Observational research
• Family-based intervention

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3. The Diary Study

• Methodology
• Diaries as a tool
• Previous literature
• HNC patients in Sweden
• Aims
• Communication adaptation
• Qualitative examples of communication exchanges

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Diary Study Method

• 4 patient-carer dyads
• Double diary
• 28-days
• Section 1 Quantitative
• How anxious or worried have you felt about
  your/their illness today?
• How much have you felt like talking about
  your/their illness today?
• Have you talked about your/their illness today?
• If yes, how helpful did you find this?
• Section 2 Qualitative
• Please could you describe a conversation or event
  that happened today to help us better understand
  your experience?

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Diary Study Feasability

• Completion
• Average 10 mins. a day
• Low burden scores
• Low distress scores
• High completion rates
• quantitative scales (3 dyads 100, 1 dyad 75 of
  days)
• qualitative section (average 51.3 of days)

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Diary Study Examplars
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Diary Study Examplars
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What does this mean?

• Variation within dyads
• Consistent between dyads
• Was a desire to talk about the illness
• More so for carers
• Low levels of disclosure
• Although rated as helpful
• Higher levels of distress accompanied by higher
  levels of disclosure

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Diary Study Section B

• Coding process 9 Themes
• Inter-rater reliability Validity
• Themes 1 2 Patient
• Themes 3 4 Carer

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Illustrative Examples

• Physical concerns / Treatment
• Really hard week for me physically. Don't want
  to keep moaning on about it so haven't been
  talking about the cancer or treatment today
  (Patient)
• Psychological concerns / Treatment
• Me and Carer had a chat today about next week
  when I finish at Christies. Told her how much I'm
  looking forward to finishing - found it quite
  hard this week. We might try to book a holiday
  soon. We got a lot sorted out and I feel better
  (Patient)

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Illustrative Examples

• Partners coping
• Patient seemed a bit off in himself today and
  looked a bit pale but said he was fine. He didnt
  really want to talk about so I left him to it -
  it's hard to know what to do with him sometimes
  but I try not to push him or upset him (Carer)
• Own coping
• I've been trying to stay positive but when I get
  chance to sit on my own for a minute I sometimes
  have a cry. I don't want to upset Patient any
  more than she already is, but I think maybe she's
  stronger than me. Told her I'm a bit down in the
  dumps and she did cheer me up - but it should be
  the other way around! (Carer)

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Illustrative Examples

• Day-to-day activity / Routine
• Shopping day today. I didnt talk about
  Patient's illness at all today. Holding on to
  some elements of normality where possible!
  (Carer)
• Talking with Health Professionals
• We didn't know if we'd get told anything about
  outcome today but it was all over and then we
  were shipped off quickly! (Patient)
• It helped talking to the nurses and knowing
  we'll have a follow-up soon (Patient))

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Illustrative Examples

• Talking with Family
• The boys have been very worried and upset
  through their Dad's illness, but we all pulled
  together and get through it as a family. We can
  talk about anything and I think maybe this has
  brought us closer (Carer)
• Talking with Others
• Spoke to a really nice lady in the waiting room
  whose husband has the same thing as Patient.
  She's nearly finished at Christies and she really
  cheered me up. She told me she goes for a walk
  every day to clear her head - might try that!
  (Carer)

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Illustrative Examples

• Fears of Recurrence
• I'm already worried about whether it will get
  rid of it all. Carer says we need to take it
  one step at a time. I know she's right but I
  don't think she understands how nervewracking
  this all is (Patient)
• I cant help but worry about the cancer and
  whether it has all gone - I dont know if she
  feels the same (Carer)

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What does this mean?

• Encourage open communication
• Awareness of raised anxiety around the end of
  treatment / FOR
• Getting back on track a long and complicated
  process
• Communication occurs within a triad
  patient-carer-health professional

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Where to now?

• Uncertainty about how carer can support patient
• Family as a group most appropriate recipient of
  care
• Lack of research on family-based interventions

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Contact

• Laura Hodges
• 0161 275 1832
• laura.j.hodges_at_
• manchester.ac.uk