The Experience of Arthritis: Reclaiming Leisure to Enhance Health and Quality of Life

Laura L. PayneAssociate Professor & Extension SpecialistUniversity of Illinois at Urbana-Champaign

Megan C. JankeAssistant Professor

East Carolina University

Arthritis in America• 50 million people diagnosed with arthritis (1 in 5 adults)• By 2030, estimated to climb to 67 million people. • Two-thirds of people with arthritis are under age 65• 2nd most frequently reported chronic condition• The leading cause of disability• Activity Limitations

– 21 million report activity limitations; growing to 25 million by 2030– 8 million (1 in 3) report work limitations, specifically– More frequent cause of activity limitation than heart disease,

diabetes or cancer• Enormous Cost

– $80.8 billion, direct costs (medical expenditures)– $47 billion, indirect costs (lost earnings)– Total Cost: $128 billion

People with Arthritis Often have Other Chronic Conditions

The onset of arthritis often causes….Stress and anxietyPainDepressionFatigueDifficult emotionsDifficulty communicating w/loved

ones about the experienceTense musclesetc. etc.

Which then can result in…..

Withdrawal from valued recreation and leisure activities that are: ◦Personally meaningful◦Enjoyable◦Important to a person’s identity &

self-concept◦Beneficial for many aspects of health

and well-being (e.g., social, physical, emotional, spiritual, intellectual)

This can be detrimental to overall health and quality of life

Key Question:

To what extent do people use selective optimization with compensation strategies (of self-regulation) to adapt and substitute their leisure activities to maintain/enhance their health?

• A Meta-theory that suggests successful self-regulation and adaptation can positively impact one’s health and wellbeing (Baltes & Baltes, 1990). Three inter-related domains:

• Selection: Loss-based and elective-based – identifying & prioritizing goals and activities due to limited capacity

• Optimization: maximizing activity engagement through internal and external regulation (e.g., beliefs, practice skills, use of time)

• Compensation: how they adapt & modify activities to negotiate limitations

• Actual testing of the SOC framework with leisure has been relatively limited

• Research suggests that both leisure and SOC strategies are influenced by the environmental resources of individuals (e.g., Baltes & Lang, 1997)

Selective Optimization with Compensation (SOC)

Some early work…..

How important is leisure repertoire and leisure style to the health of older adults with arthritis?

Perceived Physical Health

Arthritis Severity

*Rand MOS SF-20 4-item health perceptions scale

Arthritis and Leisure StudyTo examine how older adults

develop and use strategies of selective optimization with compensation for self-management of their arthritis in the context of leisure

To explore whether the leisure-based SOC strategies used by individuals varied by environmental resources

Methods178 older adults (nonprobability sample)84% femaleMean age = 74 (51-95)Data Collection: Onsite data collection- half senior housingMeasures: Leisure-based SOCArthritis Impact Measurement Scale-AIMSResource rich vs. resource poorControl variables: age, sex, marital status

Mixed Methods Study of Leisure Among Older Adults with Arthritis

Older adults used 12 (of 21 possible) SOC

strategies Elective based selection and optimization

strategies varied based upon: ◦ People who are married used more elective based

selection strategies◦ Individuals classified as “resource poor” used more

elective based selection and optimization strategies◦ Individuals who reported more elective based

selection and optimization strategies reported fewer difficulties with ADLs

◦ Loss-based selection predicted pain, anxiety and total health.

SOC StrategiesFocusing on essential activities:

◦Spending time w/family & grandchildren“when I’m w/my family, you are busy & don’t think about it [arthritis].”“I should be walking instead of doing handwork, but I have more fun doing handwork”

Restructuring leisure & adaptingSeizing opportunitiesCommitment to health promoting

aspects of leisure (and more)

Focus Groups6 focus groups were conducted5 facilities chosen (two were “resource

poor”)Approximately 60 minutesConducted until data saturation met Focus group protocol – moderator’s

guideMember checks for credibility and

accuracyAll participants received a $5 gift card to

thank them for their involvement

Purposive samplingConducted as part of a larger quantitative

studyParticipants (N = 34):83% White88% Female75% Not married31.3% Resource-poor71% reported diagnosis of osteoarthritisMore than 75% had been living with

arthritis for 5+ years

AnalysisContent analysis (Patton, 2002)Coding procedures:Identified broad themes of SOC based on

Baltes, Baltes, Freund, & Lang (1995)Creation of codebook based on typical

instances of each domainIndependent analysis for themes focused

explicitly on leisure & arthritisAnalysis of transcripts for similarities &

differences by environmental resources Coder agreement or reproducibility

Overall FindingsLeisure-time physical activities integral to

maintaining function and abilities regardless of the adults’ environmental resources

Importance of perseverance and determination

Differences by environmental resourcesOnly the “resource-rich” noted actively

seeking out resources, acquiring new skills, and commitment to leisure for health benefits

Engagement in leisure-time physical activities: structured programs versus individual involvement

ExamplesHealth promoting aspects of leisure “I have full range of motion because I have done this exercise

class for 10 years and walking for 25 and the Tai Chi for 6 or 8 years…I know if it were not for [this], you would see a different person…I would have deteriorated very badly.” (resource-rich)

“I just get out and go. It helps me…I don’t have to be with someone. It just feels better mentally which makes [me] feel better physically.” (resource-poor)

Commitment to leisure for health purposes “I try not to modify [my activities] because I try to push myself.”

(resource-rich)

“[Tai Chi] hurts every time you do the exercises, [but] you almost have to do it. Otherwise it just gets worse, your body doesn’t want to do anything.” (resource-rich

Future DirectionsUse of leisure-based SOC strategies for

self-management: role of gender & race

Role of interaction in the focus groups (Morgan, 2010)

Dialog between members in our study demonstrated the ability of these interactions to encourage self-management behaviors and cause individuals to re-evaluate their lifestyle choices