from person to patient, and partner to carer: the ...€¦ · all relationships have problems. in...

From person to patient, and partner to carer: the transitions and transformations of couples affected by chronic illness

– and how counsellors can help them

Rebecca GrayToby Newton-JohnJamie LeeClaire Ralfs

Overview

• Background

• Literature Review

• Practice Recommendations

• Tools and resources

Background

• Chronic pain and relationships (Toby Newtown-John)

• Expansion to chronic illness (Medtronic Philanthropic Funding)

• Collaboration with RASA (Practitioner consultation)

• Tools and resources (Website)

Definitions

Chronic illnesses are long-term conditions characterized by complex causes; multiple risks; long periods of latency; and impairment or disability. Examples include coronary heart disease or hepatitis C. Long-term mental health illnesses are also considered chronic illnesses, such as, depression, schizophrenia and bipolar disorder.

Definitions

Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage or experienced in terms of such damage.

Chronic pain refers to pain that has persisted for a period longer than three months. This form of pain is now considered to be a disease and rather than just being a symptom of some other condition, as it is often experienced despite attempts to treat it with medications and other therapies.

Literature Review

• Bad relationships are bad for you

• Bad relationships make it harder to manage health issues

• The ability of the partner to be supportive erodes over time

• Caring for someone with chronic illness affects the carer’swellbeing

• Improving the relationship can improve their health

Practice recommendation

• People with chronic illness may be vulnerable in relationships; or may be acting out their illness

• Loss of intimacy or couple distress may be masking power imbalances in relationships

• Screen for power imbalances in the couple relationship and wider family relationships before using these tools

• In particular, domestic and family violence may prevent therapeutic work or escalate after therapeutic work

Pre-session background briefing

In-session guided therapeutic conversation

In-session relationship checklist

Therapist

Wellbeing ‘fridge magnets’

Living with chronic illness tip sheet

Living with chronic illness videos

Patient Self-guided couples conversation

Partner tip sheet

Partner video

Partner

Website materials

Other chronic illness resources (podcasts, books, websites)

In-session background briefing







Partner tip sheet

Partner video

Partner

Website materials


Therapist

In-session (or pre-session) briefing







Partner tip sheet

Partner video

Partner

Website materials

• Provides background on ‘reasonable hope’ (Weingarten, 2010) • Contrasts ‘reasonable hope’ from ‘unrealistic hope’• Suitable for therapist and client in-session

Therapist








Partner tip sheet

Partner video

Partner

Website materials

• Provides a guided narrative therapy influenced externalisation of ‘the illness and its effects’

• Promotes conversation about a difficult topic• Suitable for therapist and client in-session

Therapist








Partner tip sheet

Partner video

Partner

Website materials

• Normalises distress with checklist of common couple issues (adapted from ‘Gottman 19’ checklist)

• Uses ‘the miracle question’ to dreams for the future• Suitable for therapist and client in-session

Therapist




Therapist




Self-guided couples conversation

Partner tip sheet

Partner video

Partner

Website materials


• Provides indirect means to show effects of chronic illness on patient’s mood

• Deliberately irreverent tone • Suitable as therapist handout or client

download

Patient




Therapist





Partner tip sheet

Partner video

Partner

Website materials


• Basic psychoeducation on chronic illness and relationships; tips for a culture of appreciation

• Drawn from Gottman Institute materials• Suitable as therapist handout or client

download

Patient




Therapist





Partner tip sheet

Partner video

Partner

Website materials


• Actor and clinician talking about common issues of chronic illness and relationships

• Based on interviews with chronic illness sufferers and research evidence

• Suitable for client streaming at home




Therapist





Partner tip sheet

Partner video

Website materials


• Scaffolded questions to explore how chronic illness is impacting on a couple relationship

• Based on narrative reauthoring conversation• Suitable for couple download at home

Partner




Therapist





Partner tip sheet

Partner video

Website materials



Partner tip sheet

Partner video

Partner

• Basic psychoeducation on chronic illness and relationships; tips for a culture of appreciation

• Drawn from Gottman Institute materials• Suitable as therapist handout or client

download

Partner




Therapist





Partner tip sheet

Partner video

Website materials


• Actor and clinician talking about common issues of chronic illness and relationships

• Based on interviews with chronic illness sufferers and research evidence

• Suitable for client streaming at home

Partner

Let’s talk about Reasonable Hope.

What about hope?

Based on the work of Kaethe Weingarten

What comes to mind when you think of hope? The usual.

‘A butterfly, a rainbow, an undemanding bird that perches in one’s soul’ (Weingarten, 2010, p. 7)Those are common images

and very ‘uplifting’, but would Chronic Illness let anyone stay uplifted like that for long? Fair point.

And the higher you fly, the further you fall…

That’s where Reasonable Hope comes in. It’s far more down to earth. Think sweaty track pants and worn out sneakers. Ok. Tell us more…

Here’s a good place to start…

Research and Dr Google confirm ‘It’s

good for relationships where

couples share feelings’.

But chronic Illness triggers powerful,

difficult and socially

undesirable feelings in couples

Is the relationship strong enough to share even those

feelings? Are couples even

allowed to feel these feelings?

Couples hide the feelings and then feel guilty about

hiding their feelings.

It’s assumed knowledge that people should

share feelings with their partner.

Frustrationbuilds

Reasonable Hope for your clients…

…is a verbReasonable hope is

something we do, not something we have or

don’t have

…is about the futureReasonable hope reminds us that

whatever else happened, the future is still up for

grabs

…is modestBecause not everything

can be done, reasonable hope settles for something getting

done

…knows its dark sideReasonable hope accepts that despair and doubt also exist at the same

time

…is about relationshipsReasonable hope

flourishes in relationships: I hope when we hope

‘The five characteristics of reasonable hope make it a more robust concept than hope in general.’ (Weingarten, 2010, p. 7)

Reasonable Hope for you as a practitioner…

Is about noticing your client’s resistance to

what is unjust

Means finding proxy measures for bigger

goals

Supports modest expectations for your

clients

Involves remembering that uncertainty is an

ally

Means taking inspiration from others

(Vicarious Hope)

‘The practice of reasonable hope is more a course of action that allows one to follow a path toward a goal than it is a feeling. Hoping does not preclude doubt and despair. Others can help one do reasonable hope, both in imagining the goal and pathways toward it and in taking actions towards the realization of the goal.’ (Weingarten, 2010, p. 16)

Gottman, J.M. & Silver, N., (1999). The Seven Principles for Making Marriage Work; New York: Crown Publishing.Weingarten, K. (2010). Reasonable Hope: Construct, Clinical Applications, and Supports. Family Process, 49 (1), 5-25.

References

What’s normal in relationships anyway?

All relationships have problems. In fact, John Gottman says that choosing a relationship means choosing problems. You simply can’t avoid problems in relationships.Here are ten common things that people complain about in relationships and what couples typically seek counselling for (taken from the ‘Gottman 19 areas checklist’).

How many of these describe the problems you face in your relationship?

1. We are becoming emotionally distant

2. We experiencing the “spill-over” of other stresses

3. We keep getting stuck on one or more issues

4. Our relationship is becoming passionless-the ‘fire’ is going out

5. There are problems in our sex life

6. When disagreements arise, unpleasant fights occur

7. Differences are emerging between us in basic values and goals or in desired lifestyle

8. Very hard events (e.g. violence, drugs, an affair) have occurred within the relationship and the relationship is not dealing with this well

9. We are not working very well as a team right now

10. We are having trouble handling issues of finances

How many did you tick?

Nearly everyone ticks at least one, most tick at least a few. ALL relationships have problems, not just yours.

Source: John Gottman

Is it me, you or us?

Here is a list of common hopes that people have for their relationships drawn from the work of John Gottman.

How easy or hard would it be for you to work towards these hopes that people have for relationships?

(1=easy to do, 5=hard to do). Leave blank any item that does not represent an issue for you.

I would like us to talk to each other more EASY 1 2 3 4 5 HARD

I would want to receive more appreciation for what I do. EASY 1 2 3 4 5 HARD

I would like it if our lives were less chaotic. EASY 1 2 3 4 5 HARD

I would like our lives to be less stressful. EASY 1 2 3 4 5 HARD

I would like us to have more fun than we do. EASY 1 2 3 4 5 HARD

We don't have enough of a social life EASY 1 2 3 4 5 HARD

I would like us to talk over a major upcoming decision. EASY 1 2 3 4 5 HARD

I don't feel my partner listens to me when I am upset. EASY 1 2 3 4 5 HARD

I don't feel supported in this relationship. EASY 1 2 3 4 5 HARD

I don't feel that my partner is very affectionate EASY 1 2 3 4 5 HARD


Is it me, you or us? Or is it the chronic illness?

Imagine tonight, after you both go to sleep, overnight a miracle happens. When you wake up the chronic illness is removed from your life, not just cured but disappeared completely from your lives and you don’t even remember having it. It’s just gone.

Now imagine that you want to work on the issues in your relationship. How easy or hard would it be for you? (1=easy to do, 5=hard to do). Leave blank any item that does not represent an issue for you.

I would like us to talk to each other more EASY 1 2 3 4 5 HARD

I would want to receive more appreciation for what I do. EASY 1 2 3 4 5 HARD

I would like it if our lives were less chaotic. EASY 1 2 3 4 5 HARD

I would like our lives to be less stressful. EASY 1 2 3 4 5 HARD

I would like us to have more fun than we do. EASY 1 2 3 4 5 HARD

We don't have enough of a social life EASY 1 2 3 4 5 HARD

I would like us to talk over a major upcoming decision. EASY 1 2 3 4 5 HARD

I don't feel my partner listens to me when I am upset. EASY 1 2 3 4 5 HARD

I don't feel supported in this relationship. EASY 1 2 3 4 5 HARD

I don't feel that my partner is very affectionate EASY 1 2 3 4 5 HARD

Even if you knew that chronic illness was affecting your ability to work on relationship issues, how is chronic illness making it easier or harder for you? That’s how Reasonable Hope can help. It doesn’t say ‘give up’, it says ‘check your expectations against your reality’.


Contacts

Humankind Website:http://www.humankind-relationships.com.au/

Contact us:[email protected]

Thanks for listening!

http://www.humankind-relationships.com.au/

mailto:[email protected]

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