Quality of Life

Quality of Life

Victoria Schirm


This chapter focuses on quality of life for the more than 133 million Americans who live with chronic illness and their families. Emphasis is on nursing practice issues related to the leading causes of death in the United States (Centers for Disease Control and Prevention [CDC], 2010a). This approach aligns with the focus of the National Institute of Nursing Research (NINR) 2006-2010 strategic plan (NINR, 2006). NINR is leading the way in promoting research in the development of nursing interventions for clients and families, focusing particularly on health promotion, quality of life, and end-of-life care. This chapter includes theoretical conceptualizations and clinical research findings that demonstrate the unique contribution of nursing in assessment, intervention, and outcomes evaluation of quality of life in chronic illness.

Nursing practice and nursing research are well positioned to meet the challenge of identifying, testing, and applying interventions that promote quality of life for survivors of acute illness who are now disabled or otherwise living with a chronic condition. Application of research findings to an individual’s quality of life enables nurses in clinical practice to plan and deliver evidence-based care. Nursing interventions guided by the best available evidence can then be individualized to the values and preferences of the client, thereby ensuring better adherence to a plan that must be a lifelong commitment. Client participation in clinical decision making about the effect that treatments may have on quality of life can be used to monitor therapy over the long term.

Quality of life evaluations can also be used to scrutinize the appropriateness of treatments and show progress toward attainment of treatment goals and responses to therapy. Objective knowledge about desired treatment outcomes for chronic illness that incorporate quality of life domains (improved health and function, pain and symptom control, or prolonged life) can be considered against expected, negative treatment effects such as financial burdens, anxiety, and disrupted lives.

Quality of life assessments provide a way to evaluate the impact of chronic illness on clients and their families. The complex interrelationships of the associated burdens of chronic illness are appreciated more fully when the client’s overall quality of life is known. In chronic illness research, quality of life is studied to identify and evaluate specific problems and needs of clients with illness or disability. In the larger arena of the healthcare system, quality of life evaluations are used to monitor the extent to
which delivered services address client needs. Outcomes that promote quality of life are valued, particularly when positive results are achieved with efficiency and cost savings. This chapter demonstrates that managing the effects of chronic illness and enhancing quality of life is a multifaceted, complex endeavor.

Defining Quality of Life

Defining quality of life has never been easy. Each individual’s unique circumstances and experiences shape quality of life, and this subjective component is an important defining element in quality of life. At the same time, objective indicators of what constitutes quality of life are needed to assess outcomes. The general or global meaning of quality of life and an overall sense of well-being may be anchored to an individual’s social and economic conditions, living arrangements, and community environment as well as culture, personal values, happiness, life satisfaction, and spiritual well-being.

The more specific health-related quality of life generally refers to perceived physical and mental health over time. Healthcare providers typically use quality of life measures to learn about an individual’s illness and its effect on daily life. In the public health arena, quality of life is evaluated to identify and track different population groups. This information can aid in supporting policies as well as in the development of interventions that enhance quality of life (CDC, 2010b).

Regardless of whether one is referring to global quality of life or health-related quality of life, the subjective or individual perspective is important to the definition. Rene Dubos’s (1959) definition addresses the subjective nature and the multidimensionality of quality of life:

Men naturally desire health and happiness … The kind of health that men desire most is not necessarily a state in which they experience physical vigor and a sense of well-being, not even one giving them a long life. It is, instead, the condition best suited to reach goals that each individual formulates for himself. (p. 228)

The World Health Organization (WHO, 1948) definition of health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity” recognizes the multidimensionality of health that is inclusive of a personal evaluation of one’s circumstances. Nurses involved in chronic illness care have a stake in understanding distinctions and overlaps in quality of life, health-related quality of life, and self-perceived health.


Key to understanding quality of life are the theoretical frameworks or models that influence the patient and family’s illness trajectory. Additionally, if increased or “better” quality of life is a patient outcome, the need to quantitatively measure quality of life is necessary.

Theoretical Frameworks

Theories, frameworks, or models in chronic illness explain the complex interrelationships among factors that influence the illness trajectory on quality of life. Such conceptualizations are important not only to generate new evidence for best nursing practice, but also to test and evaluate existing interventions that may affect quality of life in chronic illness. This section presents the literature on quality of life as a theoretical framework
or conceptualization, and quality of life as an outcome influenced by various factors depicted in an explanatory model. Examples from the nursing literature are given that use quality of life as a specific outcome of nursing interventions for persons with chronic illness.

Plummer and Molzahn (2009) conducted a critical appraisal of nursing theories to examine quality of life as embedded within the theorists’ original frameworks. They evaluated four attributes of quality of life as depicted by nurse theorists (Imogene King, Madeleine Leininger, Rosemarie Parse, Hildegard Peplau, and Martha Rogers): contextual, subjective, intangible, and health related. Plummer and Molzahn concluded there is merit in considering quality of life as more useful to nursing than the term health. In relation to nursing practice, they proposed that quality of life is valuable because it considers connections between the intangible and subjective aspects of the client’s environment. They recommended that further research be done to develop a better understanding of quality of life for differing client populations.

Naef and Bournes (2009) reviewed quality of life in a similar fashion, comparing and contrasting it to the lived experience of waiting. Their purpose was to derive knowledge for nursing practice and research. Although Naef and Bournes limited their study to clients awaiting lung transplantation, they concluded that the concept of waiting has commonalities with quality of life outcomes for other clients. To this end, they noted that the framework offers guidance to nursing practice as well as nursing research in that living in the context of waiting influences quality of life.

Understanding the theoretical underpinnings of quality of life in the context of chronic illness informs nursing research and nursing practice. For example, Weinert, Cudney, and Spring (2008) describe their conceptual model of adaptation in chronic illness. Their evolving Women to Women Conceptual Model for Adaptation to Chronic Illness consists of three constructs: environmental stimuli, psychosocial response, and illness management. Quality of life is a component of the model, defined and measured according to the WHO definition of physical health, psychological well-being, social relationships, and environment. The purpose of the model is to provide a conceptualization that increases understanding of adaptation to chronic illness and gives direction to development of appropriate nursing interventions. Weinert and colleagues note that adaptation to chronic illness is related to psychosocial responses, self-management skills, and enhanced quality of life.

Some quality of life theoretical frameworks have been posited from an ethical perspective. Allmark (2005) suggests that ethical theories are relevant to answering moral questions, especially regarding issues of quality of life versus quantity of life. An ethical framework is useful in clinical nursing practice because it gives guidance to ways that individuals’ voices can be discerned; enhances development of decision making in routine clinical practice; and considers the client’s beliefs, values, and preferences in the context of complex questions (Allmark, 2005).

Hirskyj (2007) considers ethical ramifications of resource allocations associated with the quality-adjusted life years (QALY) concept. QALY is an outcome measure that can be used to determine the efficacy of nursing care as measured by not only the quantity of life (length of life) but also the quality of life. The QALY framework provides a means to estimate and reveal client’s values, beliefs, and preferences in
relation to care outcomes. Although nurses may be hesitant to use formulas in providing holistic care, especially in the context of resource allocation, the QALY concept is supported by evidence that suggests better clinical outcomes are achieved with cost-effective care. QALY offers a systematic, evidence-based model to practice nursing care and meet the individual needs of clients (Hirskyj, 2007). These frameworks provide a context in which to consider the ethical issues that surround quality of life outcomes in chronic illness.

Other researchers have expanded the knowledge base and theory development in understanding quality of life in chronic illness by investigating clients’ priorities and perceptions. Carter, MacLeod, Brander, and McPherson (2004) found that clients’ perspectives with regard to quality of life in terminal illness are important components. A framework that considers quality of life outcomes from clients’ perspectives, as opposed to models developed by experts emphasizing a good death, can lead to interventions that are more client centered. For example, knowing that “being in charge” is more important to a dying person’s quality of life than “having a good death” can support development of appropriate interventions that facilitate client control within the context of the illness.

Theoretical models have also been constructed to elicit variables that can significantly influence and predict quality of life for the many older adults who live with chronic illness (Low & Molzahn, 2007). Such models are helpful in understanding the complex interrelationships among physical functioning, perceived health, and emotional and mental well-being to quality of life as an outcome of nursing care. Low and Molzahn found that good health, financial stability, and meaning and purpose in life have substantial positive effects on the quality of life of older adults. This model provides conceptual links among several variables—financial resources, health, physical function, meaning and purpose in life, emotional support, and environment—to quality of life. The underpinnings of this model provide direction for improving the quality of life of older adults through development of nursing interventions that promote activities of daily living, provide emotional support, or enhance the environment.

The structure, process, and outcome framework originally developed by Donabedian (1988) to assess quality of healthcare delivery guided a randomized clinical trial of a discharge intervention for hospitalized older adults with hip fractures (Huang & Liang, 2005). A structured discharge plan that was systematically implemented by an advanced practice nurse was used to evaluate several outcomes, including quality of life, after hospital discharge of elders who had sustained a hip fracture as a result of a fall.

In another study (Suhonen, Välimäki, Katajisto, & Leino-Kilpi, 2005), a model of individualized nursing care was used to evaluate outcomes of satisfaction, autonomy, and healthrelated quality of life in hospitalized clients. This model testing demonstrated a positive association between clients’ perceptions of care given by nurses and their ratings of satisfaction with care, ability to make decisions about care, and health-related quality of life. This affirmation of individualized nursing care as explicated in the model provides supporting data for evidence-based nursing practice.

Saunders and Cookman (2005) explored the theoretical underpinnings of depression
related to hepatitis C virus infection to gain a better understanding of quality of life in this client population where the illness is often chronic. The symptom experience, stigma associated with the illness, and uncertain illness trajectory were described as multidimensional components of hepatitis C-related depression. Saunders and Cookman proposed that the conceptualization provides a model for developing nursing interventions that are likely to be effective for maximizing quality of life outcomes in this special population.

Theoretical frameworks also have been advanced to explain the changing dimensions of cancer care. Once viewed as an acute, life-limiting illness, cancer in most instances is now managed as a chronic illness. Cancer nursing with children is one area where the science of nursing is embedded within the art of nursing practice (Cantrell, 2007). This conceptualization views quality of life as foundational to the experiences of children and adolescents with cancer. For good quality of life to be an outcome, the values, beliefs, and wishes of children and their families as well as the values and expertise of the oncology nurse must be acknowledged and applied with the best available scientific evidence. One without the other is not sufficient to produce health-related quality of life in pediatric oncology.

Clark (2004) used quality of life as the conceptual basis to determine how psychiatric nurses assess and provide care to clients with serious mental illness residing in community settings. Three themes emerged as ways in which quality of life influenced psychiatric nursing practice. One was that quality of life defined the goal of care in that it permeated everything nurses did. The second was that the nurse’s concern for quality of life focused interventions on the person and away from the mental illness. The third theme was that quality of life formed the foundation of the nurse-client relationship, where the focus is the individual client’s perspective as opposed to management of a disease or symptoms.

Measuring Quality of Life

As described in the previous section, theoretical frameworks provide a systematic approach to studying quality of life. Regardless of whether quality of life is conceptualized as a complex set of relationships that influence the chronic illness trajectory, or viewed as an outcome of the illness itself, an appropriate measure of quality of life is crucial. Valid and reliable measures are needed to capture accurately the elements or concepts that characterize quality of life. Quality of life has a subjective component as defined by the individual’s unique situation that reflects happiness and life satisfaction (CDC, 2010c). This general quality of life includes health as well as culture, values, beliefs, and environment. The more specific health-related quality of life is usually defined in relationship to health and physical function, and emotional and mental well-being. Elements that contribute to the more general or global quality of life may not be considered in assessments about healthrelated quality of life. At the same time, reference to health-related quality of life may suggest illness or disease.

Nurses, in particular, have a stake in understanding the distinctions and the overlaps in the quality of life dimensions. When used as a framework, the dimensions of quality of life provide a
context for assessing nursing’s contribution to improved care outcomes for clients with chronic illness. In clinical practice, nurses can use standardized quality of life assessments to plan, implement, and evaluate evidence-based care for clients with chronic illnesses. Measurement is a first step in the process because accurate and appropriate assessment of symptom status has the potential for better care management and evaluation of nursing intervention effectiveness. To this end, Sousa, Ryu, Kwok, Cook, and West (2007) created a model and validated a measure to assess the impact of rheumatoid arthritis on quality of life. They found two factors, arthritic pain and general symptoms, to be confirmatory and predictive of quality of life evaluations. They surmised that nursing interventions aimed at assessing pain and managing overall symptoms have the most potential to enhance quality of life and function for individuals with rheumatoid arthritis.

The CDC (2010c) is concerned with quality of life as a health outcome. Traditional illness outcome measures of morbidity and mortality are limiting, in that they do not consider risks, burdens, resource needs, or declines associated with illness, particularly as they relate to chronic conditions. To this end, the CDC created the “Healthy Days” measure that evaluates one’s perception of well-being via four items: self-rated health, number of days of illness or injury, number of days of emotional distress, and days unable to do self-care or work. The four-item measure was expanded to include 10 additional questions eliciting responses on individuals’ days of activity limitations, pain, depression, anxiety, sleeplessness, and feeling energized.

The WHO (2004) has also developed a standardized tool to measure quality of life and health from the individual’s perspective. In contrast to the CDC measure, the WHO quality of life measure has 26 items that assess an individual’s feelings of satisfaction and enjoyment with life, limitations due to pain, capacity for work, ability to perform activities of daily living and to get around, access to health care, and satisfaction with relationships. Both the CDC and the WHO tools have the common objective to quantify and standardize measurement of quality of life. These tools are intended to measure health and well-being in healthy populations as well as to detect illness conditions that could benefit from early intervention and treatment.

Increasingly, nursing as a discipline has recognized that it too needs to focus on measurable outcomes related to interventions. The measurement of quality of life, including healthrelated quality of life, has become one such standardized assessment as an indicator for outcomes of nursing care. Quality of life determinations that use consistent measures provide an objective assessment of clients’ care needs. Measures that include appropriate determinants that contribute to or influence quality of life can be used by nurses to give care based on the best available evidence.

Context of Quality of Life in Chronic Illness

Quality of life in chronic illness can be viewed within the context of health and functioning, psychological and spiritual well-being, societal roles, and economic status. These multiple dimensions provide a practical way to discuss the background that contributes to quality of life for individuals living with chronic illness.
Considerable overlap exists among these components. For example, health and function is multifaceted and may include perceived health, energy level, pain experiences, stress levels, independence, capacity to meet responsibilities, access to and use of health care, and usefulness to others. This view of health and function together as a quality of life component shows that reliance on any one clinical parameter may not capture the client’s overall picture of health and well-being. People with chronic illness may report a good perceived quality of life, but clinically they have objective symptoms. Thus knowledge of how symptoms affect clients’ health and function can lead to a better understanding of their quality of life in chronic illness. Typically, the presence of symptoms prompts an individual to seek health care—for example, weakness and poor coordination in the individual with multiple sclerosis. In addition, people with chronic illness are subjected to symptoms from the iatrogenic effects of their treatments. Regardless of the origin, physically distressing symptoms affect health and function and, ultimately, one’s quality of life. Moreover, symptoms and the distress they cause result in varying reports about health and function as perceived by clients. Healthcare professionals and family members sometimes report conflicting views about a person’s health and function, thereby producing quality of life ratings that may differ. Treatment decisions may be impacted by such ratings, demonstrating the importance of using quality of life assessments that consider clients’ perspectives of their health and function.

The complexity of health and function in chronic illness suggests that neither good health nor optimal function is a necessary or sufficient condition for quality of life. Psychological and spiritual components are part of quality of life, and include intangibles such as happiness, peace of mind, and a belief system. Considerable overlap exists between psychological and spiritual well-being. Psychological well-being may be thought of as an essential component of quality of life that influences overall adjustment to chronic illness. More directly, spirituality has been advanced as an important element in quality of life measurement across different cultures (Moreira-Almeida & Koenig, 2006). At the same time, caution is urged—spirituality is different from religiosity as well as different from meaning in life, hope, and peace. Most definitions take into consideration that spirituality affects all aspects of a person’s well-being. Persons living with a chronic illness sometimes must make significant life changes in order to maintain quality of life. For many individuals with chronic illness, there may be an increased reliance on psychological and spiritual resources and on the social and emotional support offered by friends and confidantes. Spirituality that included components of life satisfaction, less stress, and meaning in life was the basis for a study of women with cancer (López, McCaffrey, Quinn Griffin, & Fitzpatrick 2009). For these women, family activities, listening to music, and helping others were the most frequently used spiritual practices. López and colleagues concluded that it is beneficial to support women in their ongoing spiritual practices as they deal with a chronic illness.

Supportive care or the lack of it influences how individuals manage and cope with stress. Indeed, most people know the positive effect of having “moral support” and companionship at
times of difficulty. Family health and relationships are a large part of this aspect of quality of life. Any illness affecting a family member inevitably affects other family members, resulting in a changed quality of life for them as well. For example, when family members become primary caregivers of a member with chronic illness, there are role changes, additional responsibilities, and increased stressors that have varying effects on quality of life. Without a doubt, the overwhelming nature of chronic illness affects the quality of life not only for the client, but also for family members. Therefore, nursing interventions to promote quality of life in chronic illness are frequently aimed at caregivers. It is reasonable to expect that when caregivers are helped to manage their stress and anxiety, both the caregiver and the client realize better quality of life.

The social and cultural context of quality of life are far reaching components, as is evidenced by the manner in which organizations such as the WHO and the CDC define and measure quality of life. Unique cultural interpretations can influence perceived quality of life. Social conditions, expectations of individual behaviors, and cultural regulations affect and contribute to quality of life. Social support and cultural influences are intertwined frequently with economic aspects. Chronic illness affects the financial resources of individuals and their families. The negative impact causes psychological and emotional burdens, and drains financial assets. The reasons for financial strain and its effects vary. Frequently, a chronic illness requires individuals to decrease, suspend, or end their work, leading to a reduction or loss of income. Furthermore, if the care recipient requires much assistance or supervision, the primary family caregiver may also have to terminate employment. Therefore, a family with a member with chronic illness faces an increased financial burden resulting from the unemployment of two members. These situations contribute to an adverse quality of life through decreased workforce participation, and ultimately cause lost productivity, which further increases the overall cost of chronic illness.

Individuals with chronic illness also suffer financially because of the additional expenses incurred with medical insurance rates or out-ofpocket expenses for items not covered by insurance. Transportation to medical or treatment appointments, for example, or the extra cost of special dietary foods or supplements can add up quickly. The desperately ill person who has found little benefit from traditional therapies may spend large amounts of money on alternative forms of treatment to improve their health. The combined effect on quality of life associated with decreased income and increased expenses may not always be obvious. Therefore, nurses must be aware of how this financial burden may contribute to decreased quality of life. For example, clients may take fewer medications because they cannot afford to take the prescribed amount, or the family caregiver may be overtaxed by the caregiving burden because the family cannot afford assistance.

The following case study illustrates many aspects of quality of life in living with a chronic illness, including health and function, psychosocial elements, socioeconomic components, and the meaning of support from family and friends. The story narrative transitions across the many trajectories of living with a chronic illness.

Jun 29, 2016 | Posted by in NURSING | Comments Off on Quality of Life

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