Village Center for Care Village Care of New York A Fragile Balance Using common sense representations and a model of self regulation to explain and enhance homebound seniors’ participation in rehabilitation Linda Richmond, Ph.D. Village Center for Care Village Care of New York

PARTICIPATION IN REHABILITATION Falls are a serious problem for older people, placing them at risk for injuries that can adversely affect health, functioning, and independence. Interventions targeting risk factors have been found to moderately reduce the risk of falling and rehabilitation may improve both physical and mental functioning following a fall-related injury. Nevertheless, seniors often meet these efforts with resistance and fail to comply with rehabilitation regimens.

A CASE EXAMPLE Homebound elderly, identified by their physicians as being at high risk for falling, were asked to participate in a falls prevention intervention that focused on providing strength and mobility through rehabilitative exercises, educating patients and their caregivers, and reducing environmental risk factors in the home. About half of the clients chose up front not to participate; after agreeing, another 28% dropped out either before or within two weeks of the initial session; of the ten who remained throughout the 10-week course, many refused to participate in all or part of the intervention.

According to the physical therapist, who led the intervention, “Clients appear to be holding things in a fragile balance and resist anything that disturbs that balance, any change.” Research Question: How can the struggle for balance be used to explain and enhance participation?

Method Data Sources Interviews with physical therapist before and following session Observation of clients, PT, and interactions Review of PT progress and process notes Client record extraction Data Analyses Qualitative Content analysis “Typologies”

FRAGILE BALANCE What are the homebound elderly balancing? Risk vs. Gain Control vs. Change Old Identity vs. New Identity Hope vs. Hopelessness

EXPLAINING PARTICIPATION Through work with patients with serious illness, Howard Leventhal and colleagues developed and tested a “self-regulation” model that focuses on the way people’s representations, or “common-sense” models, of illness threats serve as targets for interpretation and for the performance and appraisal of self-regulative procedures. From the perspective of the model, explaining participation in rehabilitation occurs through identification of the patient’s self-regulation system.

The Self-Regulation Model Cultural / Institutional: roles, language Complexity of Personal Environment Work/ Family/ etc. Self: Physical; Cognitive; Competence / efficacy Paths that bypass representations Behavioral Stage Representation of Disease Meaning of symptoms Coping Procedures Appraisal Act Plan Situational Stimuli Inner & Outer Behavioral Stage Act Plan Representation of Fear Coping Procedures Appraisal

Summary -- People are active problem solvers Summary -- People are active problem solvers. -- As common-sense biologists/physicians they construct representations of their worlds and themselves. -- Representations are abstract and concrete/experiential. -- Self-regulation is a process. -- Disease features shape representations. -- Representations create goals, shape selection of procedures and perception and actual efficacy of procedures. -- Action plans are instances of procedures in specific contexts. -- Feelings of control of disease and/or symptoms and emotions affects perceptions of self competence. -- Beliefs about self (self regulation strategies) moderate process. -- Institutional/social context moderate process.

Symptoms (and their meanings) were the focus for the elaboration of clients’ illness representations. Physical symptoms (related to aging and decline) Fatigue Pain Weakness Emotional symptoms (related to loss and fear) Depression Anxiety

Contextual Factors of the homebound elderly Chronic, debilitating disease Reduced mobility Great isolation Growing sense of losing control over one’s life

Coping Procedures/Action Plans COPING PROCEDURES were aimed at maintaining control over: The environment Social interactions Self image

ACTION PLANS implement procedures that make sense given the nature of the anticipated/current health threat, the nature of the procedures relevant to controlling it, and the vulnerability and resources of the SELF. Environmental control/ Limiting the space in which they move. Refusing to walk outside. Not accepting modifications. Social interactions/ Refusing to participate in the intervention altogether. Manipulating the session. Self image/ Maintaining an active connection to the past. Focusing on what know can do.

Self assessments & self regulation strategies moderate coping Coping Procedure Action Diagnostic & Treatment Plan Representation of health threat Appraisal Somatic stimuli Identity/Cause/Time-line Consequences/Control Self Care Exercise Relax - sit Avoid risk Symptom Checks Duration/severity Non adherence as Body can’t tolerate Life Stress Minimize stress Social Comparison Do more / do less

Symptoms and Meanings: Symptoms of fatigue, pain, and weakness, signs of aging and decline, rather than discrete illnesses or past events such as falls, were used to describe their conditions.” “…I don’t have any energy. I sleep a lot. Maybe I’m ready for the end.” “I must confess I’m not doing the exercises. I don’t feel good…maybe I’m already dead. I just can’t trust my walking.” “If I don’t walk and keep quiet, there’s no pain. It’s only when I stir it up and keep active that there’s pain.” “I feel I’m going to collapse…maybe you should just give up on me.”

Physical Therapist’s Descriptions “Her husband is dead seven years but she acts like it was last week…she perseverates on issues that keep her nonfunctional.” “She was happy for me to come see her but was not interested in physical therapy…she would not do the exercises but would walk to the park and back…one day she had taken down all the curtains and washed them in the bathtub.” “She doesn’t want to get better. She hasn’t learned the exercises. She wants nothing in her apartment changed.”

Differences in Representations Physical Therapist Representation framed in functional terms Goals are related to risk of falls Rehabilitation viewed as means to mastery Client Representation framed in physical (functional and somatic) and emotional terms Goals are holistic and related to general condition Maintaining integrity viewed as means to mastery

Client-Centered Rehabilitation Create a Therapeutic Alliance Develop Common Goals Develop Shared Representations To change the identity of the problem modify the procedure increase real and perceived control