eagle-i Oregon Health and Science UniversityOregon Health and Science University
See it in Search

Karen Lyons Laboratory

Summary:

My program of research focuses on family care experiences of chronic illness in an older adult with an emphasis on psychological and relational issues. In particular, I am very interested in balancing the needs of both members of the care dyad throughout the illness trajectory, and how incongruence between patient and family member impacts care transitions and the health and well-being of both members. I have published in the areas of family care and family relationships, most notably the interface between family and formal service use, dyadic incongruence in the care situation, the effects of changing physical and mental health on relationship quality in the care dyad, and early-warning signs in predicting long-term health, depression, and strain of Parkinson’s disease spouses. My current research examines symptom incongruence, communication, decision-making, and family relationships in both end-of-life and chronic illness contexts, involving both care dyads and couples.

Affiliations:

People:

Resources:

Protocols

  • Couple perceptions of fibromyalgia symptoms protocol ( Protocol )

    Fibromyalgia (FM) is a common, debilitating and costly chronic pain syndrome characterized by widespread pain, fatigue, and poor physical function. FM affects both the patient and family unit, in particular the marital relationship. Patients and spouses struggle to manage symptoms and adapt to the unpredictable nature of the syndrome based on their individual perceptions. In addition, the stigma that often accompanies chronic pain such as FM, creates a heightened need for congruence and symptom recognition within the marital couple. When perceptions are incongruent it can lead to patient feelings of invalidation, and poor couple well-being and health. Such incongruence can also be problematic for decisions made by the couple regarding treatment, employment and role changes. The proposed exploratory study is significant and innovative because it will address many of the gaps in the literature by exploring patient-spouse incongruence in perceptions of patient pain, fatigue and physical function in 200 FM couples. Understanding ways in which FM patients and spouses disagree in their perceptions and identifying those couples most at risk will enable interventions to maximize the health and well-being of patient and spouse, and balance the needs of both members of the couple. This study has broad implications for understanding incongruence in other rheumatic samples and in the design of future interventions and management plans at the level of the couple.

  • The family living with lung cancer protocol ( Protocol )

    "Cancer patients and their family members struggle to manage symptoms, which are often severe, based on their individual perceptions of the patient’s experience. When patient and family member differ in their perceptions (incongruence), symptom management becomes more difficult, and in some cases may lead to unnecessary patient suffering, and poor patient quality of life. Health care providers are increasingly involving family members as alternate or complementary reporters of patient symptoms based on their relationship with the patient and their role in providing care. When patients and family members differ in their perceptions of symptoms, health care providers may be faced with ethical challenges regarding treatment decisions and evaluation of the patient’s quality of life. Although the problem is recognized by researchers and clinicians, very few studies have been done to understand the phenomenon and its consequences for patients and families. The primary goal of the proposed study is to examine patient-family member incongruence in 125 lung cancer families over a 12-month period. In particular, the variables that predict patient-family member incongruence, and the effect of that incongruence on patient and family member satisfaction with the decision to shift focus from active treatment to symptom palliation only. Additionally, we will examine family member health and well-being, and their retrospective perceptions of the lung cancer patient 2 months post-bereavement. Results of this lung cancer study will contribute to our understanding of the impact of incongruence within the context of the lung cancer family, and will lead to interventions to maximize the supportive role of the family to reduce the burden of cancer and transition to palliative care, and to maximize symptom management and patient quality of life."

Services

  • Implementation of fibromyalgia study service ( Support service )

    The services and areas looked at are:
    *Health Status
    *Heath Use Questionnaire
    *Daily Activities
    *The Beck Depression Inventory
    *Symptom Distress Checklist
    *Mutuality
    *Emotional-Intimacy Disruptive Behavior Scale
    *Physical Intimacy Behavior
    *Shared Activities
    *Illness-Related Communication problem scale
    *Satisfaction with Decision
    *The Perceived Social Support Scale
    *Ways of Coping Checklist
    *The Interpersonal Expectation Scale
    *Role Overload scale
    *Roles and Life events
    *The Brief Pain Inventory
    *Functional Assessment in Chronic *Illness Therapy
    *Fibromyalgia Impact Questionnaire

  • Implementation of lung cancer study service ( Support service )

    The services offered are:
    *mini–mental state examination (MMSE)
    *Blessed Orientation-Memory-Concentration (BOMC) test
    *The Brief Pain Inventory
    *Functional Assessment in Chronic Illness Therapy
    *UCSD Shortness of Breath Questionnaire
    *Epidemiological Studies-Depression scale
    *Emotional-Intimacy Disruptive Behavior Scale
    *Role Overload scale
    *Mutuality
    *Family Conflict scale
    *The Perceived Social Support scale
    *Cancer-Related Communication problem scale

Software

  • Hierarchical Linear Modeling ( Software )

    "HLM 7 offers unprecedented flexibility in modeling multilevel and longitudinal data. With the same full array of graphical procedures and residual files along with the speed of computation, robustness of convergence, and user-friendly interface of HLM 6, HLM 7 highlights include three new procedures that handle binary, count, ordinal and multinomial (nominal) response variables as well as continuous response variables for normal-theory hierarchical linear models"


Web Links:

Last updated: 2011-05-05T17:57:19.665-05:00

Copyright © 2016 by the President and Fellows of Harvard College
The eagle-i Consortium is supported by NIH Grant #5U24RR029825-02 / Copyright 2016