Carers of Head and Neck Cancer Patients: Who Cares? : Carers of Head and Neck Cancer Patients: Who Cares? Laura Hodges¹ Gerry Humphris² ¹The University of Manchester ²The University of St Andrews


Some Background: : 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”


The ‘Carer’: 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’


PhD: Hodges, L. (2006): 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


1. Meta-Analysis¹: 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..


Meta-analysis: Search Strategy: 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


Meta-Analysis: Search Results: 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


Meta-Analysis: Findings: Meta-Analysis: Findings MA 1: Significant positive relationship MA 2: Distress levels did not significantly differ between patient and carer groups


Influence of time since diagnosis:Meta-Analysis 1: Influence of time since diagnosis: Meta-Analysis 1


Carer Responses to Illness: 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.


2. CARE-FOR Study: 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


Method (continued.): 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% patient’s partner.


CARE-FOR Findings: Patient PD: CARE-FOR Findings: Patient PD


CARE-FOR Findings: Patient PD: Psychological Distress Pt T2 Psychological Distress Pt T1 Openness Psychological Distress Ca Age Pt Age Ca -.10 .20 -.39 .40 -.32 .83 CARE-FOR Findings: Patient PD


CARE-FOR Findings: Patient PD: Psychological Distress Pt T2 Psychological Distress Pt T1 Openness Psychological Distress Ca Age Pt Age Ca -.10 .20 -.39 .40 -.32 .83 CARE-FOR Findings: Patient PD


CARE-FOR Findings: Carer PD: CARE-FOR Findings: Carer PD


CARE-FOR Findings: Carer PD: Psychological Distress Ca T2 Psychological Distress Ca T1 Openness Ca Psychological Distress Pt EOI Ca Openness Pt .23 .67 -.27 .16 -.17 .63 CARE-FOR Findings: Carer PD


CARE-FOR Findings: Carer PD: Psychological Distress Ca T2 Psychological Distress Ca T1 Openness Ca Psychological Distress Pt EOI Ca Openness Pt .23 .67 -.27 .16 -.17 .63 CARE-FOR Findings: Carer PD


CARE-FOR Findings: Carer PD: Psychological Distress Ca T2 Psychological Distress Ca T1 Openness Ca Psychological Distress Pt EOI Ca Openness Pt .23 .67 -.27 .16 -.17 .63 CARE-FOR Findings: Carer PD


What does this mean?: What does this mean? Patient & Carer PD influenced by common factors: Earlier levels of distress Partner’s distress level Subjective perception of family openness Carer PD also predicted by: Self-rated EOI Partner’s perception of family openness


Implications?: Implications? Promote open communication Look at Carer EOI Observational research Family-based intervention


3. The Diary Study: 3. The Diary Study Methodology Diaries as a tool Previous literature HNC patients in Sweden Aims: Communication & adaptation Qualitative examples of communication exchanges


Diary Study: Method: 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?


Diary Study: Feasability: 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)


Diary Study: Examplars: Diary Study: Examplars


Diary Study: Examplars: Diary Study: Examplars


What does this mean?: 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


Diary Study: Section B: Diary Study: Section B Coding process: 9 Themes Inter-rater reliability & Validity Themes 1 & 2: Patient Themes 3 & 4: Carer


Illustrative Examples: 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)


Illustrative Examples: Illustrative Examples Partner’s coping “[Patient] seemed a bit off in himself today and looked a bit pale but said he was fine. He didn’t 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)


Illustrative Examples: Illustrative Examples Day-to-day activity / Routine “Shopping day today. I didn’t 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))


Illustrative Examples: 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)


Illustrative Examples: 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 can’t help but worry about the cancer and whether it has all gone - I don’t know if she feels the same” (Carer)


What does this mean?: 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


Where to now?: 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


Contact: Contact Laura Hodges 0161 275 1832 laura.j.hodges@ manchester.ac.uk