Acceptance and Mindfulness in MS: Individual and couple perspectives

1. Acceptance and Mindfulness in MS: Individual and couple perspectives Kenneth Pakenham School of Psychology The University of Queensland Australia

2. Background: Characteristics of MS • complex neurological disorder • typically degenerative • demyelination of nerve fibres interferes with transmission of impulses • affects approximately 2.5 million persons worldwide (WHO, 2004) • prevalence is twice as high in women as in men • onset 20 - 40 • the most common chronic neurological disease among young people • no known cause or cure • course is unpredictable • clinical symptoms vary widely (eg. cognitive impairment, pain, fatigue, loss of bowel or bladder control, mobility impairments, and emotional changes) • symptoms affect most, if not all, areas of a person’s life • 20% lifetime prevalence rate for depressive disorders • 36% lifetime prevalence rate for anxiety disorders • 28% of MS carers report clinically significant levels of distress

3. Background • 2 studies investigate the roles of acceptance and mindfulness in adjusting to MS • The MS context: • ‘radical acceptance’ • present moment awareness that frequently involves experiencing the pain of ‘decay’

4. STUDY 1 (Pakenham & Flemming, 2012) • Aim: to examine relations between acceptance and adjustment to MS using a purpose-built scale called the MS Acceptance Questionnaire (MSAQ). • Hypothesis: acceptance would be associated with better adjustment to MS (lower distress & higher positive affect, life satisfaction & marital adjustment, & better health).

5. STUDY 1: method Data for Study 1 & 2 are drawn from longitudinal research on families coping with MS • 128 parents with MS completed measures of demographics, illness & adjustment at Time 1, & measures of acceptance and adjustment 12 months later (Time 2). • Mean age 43 years (SD = 6.5, range = 30 to 57) • 84% female • Mean illness duration 7.67 years (SD = 5.75, range = 4 months - 30 yrs) • MS severity: 32% mild, 56% moderate, 10% severe

6. STUDY 1: method • Adjustment Measures; completed at Time 1 & Time 2: • Health status (Pakenham et al, 1994) • Life satisfaction (Pavot & Diener, 1993) • Positive affect (Bradburn, 1969) (Pakenham & Cox, 2008) • Distress (Depression Anxiety &Stress Scale; Lovibond & Lovibond, 1995) • Relationship satisfaction (Abbreviated Spanier Dyadic Adjustment Scale; Sharpley& Rogers, 1984)

7. STUDY 1: method • Acceptance & Action Questionnaire (AAQ): • 16-item AAQ (Bond & Bunce, 2003) • 2 subscales: Action and Willingness • MS Acceptance Questionnaire (MSAQ): • Developed with reference to the AAQ & the CPAQ (McCracken, 1998) • Items were adapted to reflect the experience of living with MS • 20 (out of 25) items were endorsed by an expert panel and these constituted the MSAQ • 7-point rating scale (1 = never true to 7 = always true) • higher scores indicating greater acceptance of MS

8. STUDY 1: Factor analysis of the MSAQ • Principal Components analysis (orthogonal & oblique rotations): • Two factors, 51% of the total variance • Action (8 items) 30% • Willingness (8 items) 22% • All items loaded >.50 • Internal reliabilities: .87 Action; .79 Willingness • Correlation .25, p<.01 • Convergent validity: • MSAQ Action: • AAQ Action (r = .60, p<.01) • AAQ Willingness (r = .44, p<.01) • Acceptance coping (r = .58, p<.01) • Acceptance sense making (r = .62, p<.01) • MSAQ Willingness • Acceptance coping (r= .19, p<.05)

9. STUDY 1: relations between MSAQ & illness, demographics & adjustment • Less disability (r=.24, p<.01) & cognitive impairment (r=-.27,p<.01) related to higher MSAQ Action. • Being in a relationship (F=3.94,p<.01)& being female (F=4.41, p=.04) were related to higher MSAQ Action. • After controlling for the effects of initial adjustment & relevant demographic & illness variables (6 covariates): • MSAQ Action predicted greater positive affect(12%), & health(5%) & marginal predictor of life satisfaction (2%). • MSAQ Willingness predicted better health but lower positive affect • AAQ (Action) predicted lower distress • MSAQ 4 – 12% vs. AAQ 4%

10. STUDY 1: conclusions • Findings support the beneficial effects of acceptance in MS • Although acceptance declined as the disease progressed • 2 MSAQ factors (Action & Willingness) reflect the dual definition of acceptance consistent with other ACT acceptance measures • Sound psychometric properties • MSAQ was a stronger predictor of adjustment to MS than the AAQ.

11. STUDY 1: conclusions • Mixed findings re MSAQ Willingness: • Reflect the ambiguous and complex nature of willingness • EG. willingness to relinquish control of emotional reactions to illness may have health benefits by dampening emotional reactivity to illness, including the experience of positive emotions. • Illness acceptance was related to less reliance on coping strategies focused on dealing with the emotional consequences of illness (Karademas & Hondronikola, 2010). • Willingness subscale of the Tinnitus Acceptance Q’aire was unrelated to adjustment in people with tinnitus (Westin et al, 2008). • Measurement weaknesses: • MSAQ Willingness items may tap passive resignation rather than active acceptance. • Acceptance may be equated with approval

12. STUDY 2: (Pakenham & Samios, In press) • To investigate the roles of mindfulness& acceptance on adjustment in couples coping with MS by examining: • the effects of an individual’s mindfulness & acceptance on their own adjustment (actor effects) and • the effects of their partner’s mindfulness & acceptance on their adjustment (partner effects) using the Actor-Partner Interdependence Model (Kenny, Kashy& Cook, 2006)

13. STUDY 2: hypotheses • Actor effects: mindfulness & acceptance would be associated with better adjustment • Partner effects: mindfulness & acceptance in each partner would be associated with better adjustment in the other partner • Moderating effects: • the partner effect of mindfulness would moderate the actor effect of mindfulness on adjustment • the partner effect of acceptance would moderate the actor effect of acceptance on adjustment. • Explored the moderating effects of gender & MS status (patient vs. spouse) on the actor and partner effects of mindfulness & acceptance on adjustment.

14. STUDY 2: method • 69couples completed Time 1 & Time 2 measures of mindfulness, acceptance & adjustment • Dyadic data analytic approach (Kenny, Kashy& Cook, 2006) • Terminology: • participants are “patients” or “spouses” • “partner” refers to the other person in the couple • Patients: mean age 42 years; 78% female • Spouses: mean age 43 years; 78% male • mean duration of caregiving 5.91 years (SD = 4.68; range 1 month to 25 years)

15. STUDY 2: method • Acceptance and Mindfulness Time 2 • Acceptance: AAQ (Bond & Bunce, 2003) • Mindfulness: Mindful Attention Awareness Scale (Brown & Ryan, 2003) • Adjustment measures Times 1 & Time 2: • Depression & Anxiety (DASS-21;Lovibond & Lovibond, 1995) • Life satisfaction • Positive affect • Relationship satisfaction

16. STUDY 2: results • Actor effects • mindfulness & acceptance were associated with better adjustment, although • beneficial actor effects of acceptance were evident across all adjustment domains (all Bsp<.01) whereas • beneficial direct effects of mindfulness were only evident on distress (all Bsp<.01) • Partner effects • support for the beneficial impacts of partner acceptance on actor relationship satisfaction (B=.13,p<.01) • ie. Individuals perceived better relationship satisfaction when their partner reported greater acceptance. • Partner effects for mindfulness were not evident. (B = unstandardised coefficient)

17. STUDY 2: results • Actor-Partner Interactions: • Actor-partner interaction effect on depression(B=.01, p<.05) • when the actor reported high acceptance & the partner reported low acceptance, the actor reported lower depression, whereas when both actor & partner reported high acceptance actors reported higher depression. • Moderating effects of gender & MS status: • No gender moderating effects • MS status (patient vs. spouse) moderated: • Link between mindfulness & relationship satisfaction (B=.08, p<.05) • mindfulness was related to greater relationship satisfaction for patients, but was unrelated to relationship satisfaction for spouses. • Link between acceptance & relationship satisfaction (B=.09, p<.05) • Acceptance was related to greater relationship satisfaction for spouses, but was unrelated to relationship satisfaction for patients

18. Study 2: conclusions Mindfulness • Beneficial actor effects of mindfulness on distress • Absence of any direct effects on positive outcomes • Similar to prior findings (Brown & Ryan, 2003) • Dispositional vs. state mindfulness • Beneficial effects of mindfulness on relationship satisfaction for patients, but not for spouses • Increased mindfulness evident in patient benefit finding (Pakenham & Cox, 2009)

19. Study 2: conclusions Acceptance • Beneficial effects of acceptance on all adjustment outcomes • Beneficial effects of acceptance on relationship satisfaction for spouses, but not for patients • caregiving entails many relationship challenges that require acceptance (Pakenham, 2008) • Greater acceptance protects individuals from depression when in the context of lower partner acceptance. • Complementary coping is related to marital adjustment in couples coping with chronic illness (Badr, 2004). • High values-driven action in each partner may pull them in different life directions and create existential dilemmas in illness context – need for couples to recalibrate values.