BRIEF REPORT
The meaning in life for patients recently hospitalized with congestive heart failure Inola Thomas Mello, DNP, RN, FNP-C (Assistant Professor) & Alyce S. Ashcraft, PhD, RN (Professor) Texas Tech University Health Sciences Center School of Nursing Lubbock, Texas
Keywords Quality; chronic illness; nurse practitioner communication; heart failure; patient satisfaction; palliative care; patient outcomes. Correspondence Inola Mello, DNP, RN, FNP-C, Anita Thigpen Perry School of Nursing, Health Sciences Center, Texas Tech University, Box 45008, 1003 Flint, Lubbock, TX 79409-5008. Tel: 806-743-2860; Fax: 806-743-1622; E-mail: [email protected] Received: July 2011; accepted: January 2012 doi: 10.1002/2327-6924.12047
Abstract Purpose: Quality of life (QOL) is based on individual values and is identified by what each person believes it to be. To provide patient centered care, practitioners must have an understanding of what each individual identifies as important in their lives. The purpose of this study was to identify what provides meaning to the lives of patients recently hospitalized with congestive heart failure (CHF). Data source: Participants for this pilot study were a convenience sample of 32 patients hospitalized as a result of complications of CHF. Study methodology was a cross-sectional, interview style survey, utilizing the Schedule for Meaning in Life Evaluation (SMiLE). Conclusion: No statistical significance was found between SMiLE scores and demographic data, including number of admissions or length of time since diagnosis. These findings suggest meaning in life (MIL), and subsequently QOL, may not be related to having a diagnosis of CHF. Implications for practice: Identifying patients’ relationship with their families, through the use of the SMiLE, has the ability to guide advanced planning decision making. Knowing, and preparing for, various family dynamics before the final stages of CHF may decrease episodes of care provided in opposition to patients’ wishes, whether or not their wishes were previously stated or documented.
Background and significance Improvements in quality of life (QOL) and life expectancy of patients are goals of Healthy People 2010 (Centers for Disease Control and Prevention [CDC], 2009). Chronic diseases have a negative effect on QOL and account for more than one half of the world’s disease burden; chronic illnesses are a major cause of death (CDC 2009; Granger, Moser, Germino, Harrell, & Ekman, 2006; Unsar & Sut, 2010; World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department, 2005; Yu & Woo, 2009). Congestive heart failure (CHF) has tripled over the past two decades; millions of people globally live with the CHF, making heart failure (HF) a leading chronic disease (Riegel et al., 2010; Yu & Woo, 2009). The World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department (2005) and 70
the CDC (2009) explicitly state healthcare practitioners must be able to provide patient-centered, science-based approaches to patient care. This is particularly important for patients with chronic diseases, who have different healthcare needs from patients with acute conditions (Coventry, Grande, Richards, & Todd, 2005). Thrasher (2002), Granger et al. (2006), and Berry` and Crespo (2008) explained the importance of Caban providers incorporating patient specific factors that may affect chronic disease self-care into patient care plans. Based on the knowledge that individuals’ beliefs and values affect health behaviors, this approach will improve health-related quality of life (HRQOL) and support individual meaning in life (MIL) for patients living with chronic diseases (Murray, Boyd, & Sheikh, 2005; Thrasher, 2002; World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department, 2005).
C 2013 The Author(s) Journal of the American Association of Nurse Practitioners 26 (2014) 70–76 C 2013 American Association of Nurse Practitioners
Meaning in life
I. T. Mello & A. S. Ashcraft
QOL is based on patients’ values and is what the patient says it is (Fagerlind, Ring, Brulde, Feltelius, & ¨ Lindblad, 2010). Fegg, Kramer, L’hoste, and Borasio (2008) reported MIL is an individualized construct of QOL; however, MIL has a higher correlation with self than QOL. Because of the need to improve QOL for patients with CHF, the purpose of this study was to examine MIL in patients recently hospitalized with CHF.
years, there have been minimal improvements in the prognosis of CHF; the focus of care for HF has begun to move from care quantity to care quality (Dembitsky, 2006; Hines et al., 2010). CHF management goals focus on decreased readmissions, improved processes, and patient outcomes (Asch et al., 2005; Dembitsky, 2006; Hines et al., 2010; Smith et al., 2008). However, patients may have the greatest burden from CHF secondary to personal disability and reduced QOL (Dembitsky, 2006).
Literature review Chronic illness and the impact of CHF
CHF, MIL, and QOL
Chronic illness accounts for over half of the global disease burden, is a significant factor in healthcare spending, and is a major cause of death (CDC 2010; Joyce, Keeler, Shang, & Goldman, 2005; World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department, 2005). Gaps in the quality of care for patients with a chronic illness include social services, palliative care, and appropriate healthcare utilization (Jerant, von Friederichs-Fitzwater, & Moore, 2004; Murray et al., 2005). Healthcare providers frequently avoid discussing life limiting, chronic disease prognosis, or end-of-life issues (Heyland et al., 2009; Old, 2008; Schirm & Sheehan, 2005). Patient-centered care is critical to address patients’ goals, values, perspectives, abilities, and preferences in treatment plan decisions (Granger et al., 2008; World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department, 2005). CHF has been identified as a chronic, progressive illness with a 5-year mortality rate worse than most forms of cancer (McMurray & Stewart, 2002; Riegel et al., 2010). In 2006, CHF affected approximately 5 million patients, and accounted for 287,200 deaths and more than 1 million hospitalizations (Granger et al., 2006; Hines, Yu, & Randall, 2010). The incidence of CHF has tripled in the past two decades, with 550,000 new patients diagnosed each year; and CHF will continue to rise based on improved health care for acute cardiac conditions and the aging population (Hines et al., 2010; Lacey & Tabberer, 2004; McMurray & Stewart, 2002; Riegel et al., 2010). CHF is a significant cause of hospitalization and rehospitalizations and accounts for more than 5% of geriatric and adult admissions (Lacey & Tabberer, 2004; McMurray & Stewart, 2002; Smith, Hughes-Cromwick, Forkner, & Galbreath, 2008). Unplanned hospital readmissions cost 17.4 billion Medicare dollars a year; therefore, CHF is one of the most costly chronic diseases in the United States (Dembitsky, 2006; Hines et al., 2010). Over the
Multiple domains to quantify QOL have been identified. These domains included meaning, or purpose, in life (Athanasopoulos, Dritsas, Doll, & Cokkinos, 2010; Kagawa-Singer, Padilla, & Ashing-Giwa, 2010). Meaning provides individuals with fulfillment and purpose, and provides a sense of having a life worth living; meaning has been utilized as a central element for intervention in psychotherapy and end of life care (Fegg, Kramer, Bausewein, & Borasio, 2007; Fegg et al., 2008). Fegg et al. (2010) reported patients who have identified their MIL are less likely to be depressed or have feelings of hopelessness. Stiefel et al. (2008) and Sjolie (2002) addressed the fact that patients need assistance searching for their MIL. CHF is a chronic illness with one of the greatest impacts on patients’ QOL (McMurray & Stewart, 2002). HF patients’ QOL is so poor that patients admit they would trade one half of their remaining life for improved quality Dembitsky, 2006; McMurray & Stewart, 2002). Poor QOL has been show to be an indicator for readmissions and mortality (Pendersen, Herrmann-Lingen, de Jonge, & Scherer, 2010). Decreased QOL associated with CHF frequently contribute to depression and aggressive care in later stages of CHF has been associated with decreased QOL (Smith, 2010; Unsar & Sut, 2010; Wright et al., 2008). However, patients may consider aspects of their lives that are unrelated to their health as the most important influence on their QOL (Edwards, 2005). Health status does not always define QOL; therefore, HRQOL is designated as one facet of QOL. Although the terms do not measure the same concepts, QOL and HRQOL have been used interchangeably (Athanasopoulos et al., 2010; Fagerlind et al., 2010). Fegg, Wasner, Neudert, and Borasio (2005) stated HRQOL represents the differences between physical functioning and global life satisfaction. QOL as well as overall sense of well-being is subjective and highly individualized, affected by culture, ethnicity, race, perceived choices, knowledge, spirituality, and personal values (Kagawa-Singer et al., 2010; Thrasher, 2002). 71
Meaning in life
I. T. Mello & A. S. Ashcraft
Theory
Table 1 Meaning areas and total selection of area by gender
The theoretical basis for this study was the perceptual cognitive model of self-regulation (Leventhal, Leventhal, & Contrada, 1998). This theoretical construct is applicable in chronic illness and is specific to patient-centered care. Leventhal et al. (1998) proposed that people are active problem solvers, context shapes the problem solving process, and what is perceived as the most urgent threat to health is what motivates health behavior. This is important because coping skills and MIL are flexible and can change based on an individual’s perception of their environment and representations of reality (Leventhal et al., 1998; Sjolie, 2002).
Meaning area
Methodology Design This study was developed as a cross-sectional pilot study.
Description of sample Using a convenience sample of hospitalized patients admitted with a diagnosis of CHF, 44 eligible subjects were approached, 32 subjects agreed to participate and were enrolled. Sixteen additional patients admitted with CHF were either unavailable to approach for consent or did not meet eligibility requirements. Patients in intensive care units were not considered. To be included in the study, patients were over the age of 40 with an admitting diagnosis of CHF. Patients were excluded if either the primary care nurse or researcher deemed they were too ill to participate, unable to speak conversational English, or had a diagnosis of dementia or unstable mental illness. The patients’ primary care nurse informed eligible hospitalized patients of the study. If a verbal willingness to participate in the study was given to the nurse, the principle investigator (PI) or research assistant obtained informed consent. After institutional review board approval from the study site and the associated academic institution, subject enrollment and data collection were completed over a 4-month period, beginning November 2010 through February 2011. Subjects’ ages ranged from 43 to 99.
Method of measurement The Schedule for Meaning in Life Evaluation (SMiLE) is a respondent-generated instrument designed by Fegg and colleagues to assess an individual’s MIL. The tool allows subjects to list areas of ”meaning” and quantitatively measures the importance of each area and the patient’s level of satisfaction with each area. The tool has a 72
Males Females
Family 14 Social relationships 0 Leisure time 8 Finances 2 Health 7 Nature/animals 8 Hedonism 4 Personal growth 1
15 4 5 2 8 5 3 0
Meaning area Partnership Occupation Home/garden Spirituality Satisfaction Social commitments Art/culture
Males Females 6 2 3 6 0 3 1
1 0 1 11 0 1 2
test–retest reliability of 0.72 (p < .001). Convergent validity has been tested with Purpose in Life test (r = .48, p < .001), self-transcendence scale (r = .34, p < .001), and general numeric scale on MIL (r = .53, p < .001; Fegg, Kramer, L’hoste, & Borasio, 2008). Levels of satisfaction for each area are scored by subjects on a 7-point Likert scale with −3 being “very unsatisfied” and +3 being “very satisfied.” Weight/importance of each area are scored by subjects on a 7-point adjectival scale with 0 being “not important” and 7 being “extremely important.” Mean values for index of satisfaction (IoS) and index of weight (IoW) are then calculated. Satisfaction scores and scores of weight for each subject are recalculated to identify a score between 0 and 100. Total scores for IoS and IoW are combined to identify the index of weighted satisfaction (IoWS) score, or SMiLE score (0–100). The SMiLE is a quantitative measure of subjects’ overall satisfaction with areas they identified as meaningful. Total SMiLE score takes into consideration that areas identified as less important should potentially have less impact on a person’s overall life satisfaction. Areas of meaning identified by subjects were categorized and recorded according to the previous work of the SMiLE developer (see Table 1 for categories and selection by gender).
Data collection process The SMiLE survey was a completed interview style by the researcher to alleviate unnecessary patient burden and to assure consistency in tool use. The SMiLE instructs subjects to identify one to seven areas in their lives that provide meaning, or that they consider make their life worth living. To facilitate patients’ identification of meaningful areas, identical examples of possible areas were provided for each subject. Examples offered to subjects included jobs, relationships, spending time outdoors, hobbies, pets, or any type of spirituality.
Results Study participants were evenly divided by gender, 50% married, 21.9% divorced, and 18.8% widow/widower.
Meaning in life
I. T. Mello & A. S. Ashcraft
Figure 1 SMiLE scores by gender.
The remaining 9.4% were either never married or in a committed relationship. Number of hospital admissions for CHF ranged from one (21.9%) to six or more (25%). Mean years since initial CHF diagnosis was 2.59 (SD = 1.898). The majority of subjects had a high school diploma, or equivalency, although education ranged from eighth grade or less (12.5%) to completion of a graduate degree (6.3%). The majority of subjects (71.9%) resided in the county in which the study was conducted. The majority of subjects (78.1%) had some type of assistance with coordinating their health care; this assistance ranged from spouses or other family to home health providers. Three subjects were residents in assisted living facilities. Average income was low, 68.8% had an annual income of $34,999 or less, 56.3% had healthcare costs covered by Medicare and a supplemental insurance, 9.4% were covered by Medicare/Medicaid, and 6.3% were self-pay. The majority (62.5%) had some routine CHF symptoms, such as shortness of breath, edema, or decreased activity tolerance. Data were analyzed using SPSS Gradpak 17.0 (IBM SPSS Gradpack 17.0, IBM, Armonk, New York). The mean SMiLE score for this sample population was 79.37 (SD = 20.285). Males had a higher mean SMiLE score of 83.24 compared to the mean of females of 75.49 (SD = 21.143; see Figure 1 for graph of scores). SMiLE scores were not normally distributed and ranged from 33.3 to 100. Independent sample t-test revealed no significant difference in SMiLE mean based on gender, t(30) = 1.083, p = .287. Pearson’s chi-square identified a statis R
R
tically significant correlation between gender of respondents and the presence of routine CHF symptoms (chisquare (1) = 4.80, p = .028). Chi-square correlations were run on additional nominal data. Because of small cell size, a Cramer’s V was subsequently calculated, finding a statistically significant correlation between both the number of years since diagnosis and the number of hospital admissions (Cramer’s V = .542, p = .005), and the number of admissions and the presence of routine CHF symptoms (Cramer’s V .657, p = .017). No other correlations in data were identified.
Discussion The purpose of this study was to examine MIL in patients recently hospitalized with CHF. The SMiLE was developed to measure MIL; this study is the first study using the tool in patients with CHF. Because the application of patient-centered care and utilization of patient priorities has the potential to improve patient and family satisfaction in the final stages of life, healthcare providers must identify methods to adequately address patients’ priorities. Not all patients desire aggressive care methods in later stages of life. Healthcare providers knowing, and implementing, patients’ values and priorities into treatment plans could decrease CHF readmissions and healthcare costs. Patient/provider partnerships must include patients’ expectations and personal needs (Harkness, 2005). True patient-centered care will ultimately reflect on patient 73
Meaning in life
satisfaction outcomes as required by Medicare’s recent implementation of value-based purchasing (VBP). This small pilot study identified the SMiLE survey to be a valuable tool for assisting patients with CHF in identifying their individual MIL. Three major findings were identified.
Patient provider communication The interview format allowed for patient reflection and discussion. During study interviews, two patients noted how valuable the thought process was during their identification of meaningful areas. By helping patients identify their MIL, they have the opportunity to identify and organize their life priorities. Subjects discussed how meaningful areas, satisfaction with those areas, and the importance of those areas had evolved with lifestyle changes that ultimately occurred since their diagnosis with CHF. This type of discussion encourages patient involvement in decision making and could provide opportunities to develop individualized interventions and improve the quality of care, based on patient specific values and SMiLE scores.
Demographics The variations in SMiLE scores and demographics provided insight into the broad scope and effect of CHF. Researchers expected to identify more commonalities in the sample; however, demographic data revealed the indiscriminate effect of CHF. The pilot study sample ranged in age 43 to 99; education ranged from illiteracy to completion of graduate degrees; and annual income ranged from
The meaning in life for patients recently hospitalized with congestive heart failure Inola Thomas Mello, DNP, RN, FNP-C (Assistant Professor) & Alyce S. Ashcraft, PhD, RN (Professor) Texas Tech University Health Sciences Center School of Nursing Lubbock, Texas
Keywords Quality; chronic illness; nurse practitioner communication; heart failure; patient satisfaction; palliative care; patient outcomes. Correspondence Inola Mello, DNP, RN, FNP-C, Anita Thigpen Perry School of Nursing, Health Sciences Center, Texas Tech University, Box 45008, 1003 Flint, Lubbock, TX 79409-5008. Tel: 806-743-2860; Fax: 806-743-1622; E-mail: [email protected] Received: July 2011; accepted: January 2012 doi: 10.1002/2327-6924.12047
Abstract Purpose: Quality of life (QOL) is based on individual values and is identified by what each person believes it to be. To provide patient centered care, practitioners must have an understanding of what each individual identifies as important in their lives. The purpose of this study was to identify what provides meaning to the lives of patients recently hospitalized with congestive heart failure (CHF). Data source: Participants for this pilot study were a convenience sample of 32 patients hospitalized as a result of complications of CHF. Study methodology was a cross-sectional, interview style survey, utilizing the Schedule for Meaning in Life Evaluation (SMiLE). Conclusion: No statistical significance was found between SMiLE scores and demographic data, including number of admissions or length of time since diagnosis. These findings suggest meaning in life (MIL), and subsequently QOL, may not be related to having a diagnosis of CHF. Implications for practice: Identifying patients’ relationship with their families, through the use of the SMiLE, has the ability to guide advanced planning decision making. Knowing, and preparing for, various family dynamics before the final stages of CHF may decrease episodes of care provided in opposition to patients’ wishes, whether or not their wishes were previously stated or documented.
Background and significance Improvements in quality of life (QOL) and life expectancy of patients are goals of Healthy People 2010 (Centers for Disease Control and Prevention [CDC], 2009). Chronic diseases have a negative effect on QOL and account for more than one half of the world’s disease burden; chronic illnesses are a major cause of death (CDC 2009; Granger, Moser, Germino, Harrell, & Ekman, 2006; Unsar & Sut, 2010; World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department, 2005; Yu & Woo, 2009). Congestive heart failure (CHF) has tripled over the past two decades; millions of people globally live with the CHF, making heart failure (HF) a leading chronic disease (Riegel et al., 2010; Yu & Woo, 2009). The World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department (2005) and 70
the CDC (2009) explicitly state healthcare practitioners must be able to provide patient-centered, science-based approaches to patient care. This is particularly important for patients with chronic diseases, who have different healthcare needs from patients with acute conditions (Coventry, Grande, Richards, & Todd, 2005). Thrasher (2002), Granger et al. (2006), and Berry` and Crespo (2008) explained the importance of Caban providers incorporating patient specific factors that may affect chronic disease self-care into patient care plans. Based on the knowledge that individuals’ beliefs and values affect health behaviors, this approach will improve health-related quality of life (HRQOL) and support individual meaning in life (MIL) for patients living with chronic diseases (Murray, Boyd, & Sheikh, 2005; Thrasher, 2002; World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department, 2005).
C 2013 The Author(s) Journal of the American Association of Nurse Practitioners 26 (2014) 70–76 C 2013 American Association of Nurse Practitioners
Meaning in life
I. T. Mello & A. S. Ashcraft
QOL is based on patients’ values and is what the patient says it is (Fagerlind, Ring, Brulde, Feltelius, & ¨ Lindblad, 2010). Fegg, Kramer, L’hoste, and Borasio (2008) reported MIL is an individualized construct of QOL; however, MIL has a higher correlation with self than QOL. Because of the need to improve QOL for patients with CHF, the purpose of this study was to examine MIL in patients recently hospitalized with CHF.
years, there have been minimal improvements in the prognosis of CHF; the focus of care for HF has begun to move from care quantity to care quality (Dembitsky, 2006; Hines et al., 2010). CHF management goals focus on decreased readmissions, improved processes, and patient outcomes (Asch et al., 2005; Dembitsky, 2006; Hines et al., 2010; Smith et al., 2008). However, patients may have the greatest burden from CHF secondary to personal disability and reduced QOL (Dembitsky, 2006).
Literature review Chronic illness and the impact of CHF
CHF, MIL, and QOL
Chronic illness accounts for over half of the global disease burden, is a significant factor in healthcare spending, and is a major cause of death (CDC 2010; Joyce, Keeler, Shang, & Goldman, 2005; World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department, 2005). Gaps in the quality of care for patients with a chronic illness include social services, palliative care, and appropriate healthcare utilization (Jerant, von Friederichs-Fitzwater, & Moore, 2004; Murray et al., 2005). Healthcare providers frequently avoid discussing life limiting, chronic disease prognosis, or end-of-life issues (Heyland et al., 2009; Old, 2008; Schirm & Sheehan, 2005). Patient-centered care is critical to address patients’ goals, values, perspectives, abilities, and preferences in treatment plan decisions (Granger et al., 2008; World Health Organization Noncommunicable Diseases and Mental Health Cluster Chronic, Chronic Diseases and Health Promotion Department, 2005). CHF has been identified as a chronic, progressive illness with a 5-year mortality rate worse than most forms of cancer (McMurray & Stewart, 2002; Riegel et al., 2010). In 2006, CHF affected approximately 5 million patients, and accounted for 287,200 deaths and more than 1 million hospitalizations (Granger et al., 2006; Hines, Yu, & Randall, 2010). The incidence of CHF has tripled in the past two decades, with 550,000 new patients diagnosed each year; and CHF will continue to rise based on improved health care for acute cardiac conditions and the aging population (Hines et al., 2010; Lacey & Tabberer, 2004; McMurray & Stewart, 2002; Riegel et al., 2010). CHF is a significant cause of hospitalization and rehospitalizations and accounts for more than 5% of geriatric and adult admissions (Lacey & Tabberer, 2004; McMurray & Stewart, 2002; Smith, Hughes-Cromwick, Forkner, & Galbreath, 2008). Unplanned hospital readmissions cost 17.4 billion Medicare dollars a year; therefore, CHF is one of the most costly chronic diseases in the United States (Dembitsky, 2006; Hines et al., 2010). Over the
Multiple domains to quantify QOL have been identified. These domains included meaning, or purpose, in life (Athanasopoulos, Dritsas, Doll, & Cokkinos, 2010; Kagawa-Singer, Padilla, & Ashing-Giwa, 2010). Meaning provides individuals with fulfillment and purpose, and provides a sense of having a life worth living; meaning has been utilized as a central element for intervention in psychotherapy and end of life care (Fegg, Kramer, Bausewein, & Borasio, 2007; Fegg et al., 2008). Fegg et al. (2010) reported patients who have identified their MIL are less likely to be depressed or have feelings of hopelessness. Stiefel et al. (2008) and Sjolie (2002) addressed the fact that patients need assistance searching for their MIL. CHF is a chronic illness with one of the greatest impacts on patients’ QOL (McMurray & Stewart, 2002). HF patients’ QOL is so poor that patients admit they would trade one half of their remaining life for improved quality Dembitsky, 2006; McMurray & Stewart, 2002). Poor QOL has been show to be an indicator for readmissions and mortality (Pendersen, Herrmann-Lingen, de Jonge, & Scherer, 2010). Decreased QOL associated with CHF frequently contribute to depression and aggressive care in later stages of CHF has been associated with decreased QOL (Smith, 2010; Unsar & Sut, 2010; Wright et al., 2008). However, patients may consider aspects of their lives that are unrelated to their health as the most important influence on their QOL (Edwards, 2005). Health status does not always define QOL; therefore, HRQOL is designated as one facet of QOL. Although the terms do not measure the same concepts, QOL and HRQOL have been used interchangeably (Athanasopoulos et al., 2010; Fagerlind et al., 2010). Fegg, Wasner, Neudert, and Borasio (2005) stated HRQOL represents the differences between physical functioning and global life satisfaction. QOL as well as overall sense of well-being is subjective and highly individualized, affected by culture, ethnicity, race, perceived choices, knowledge, spirituality, and personal values (Kagawa-Singer et al., 2010; Thrasher, 2002). 71
Meaning in life
I. T. Mello & A. S. Ashcraft
Theory
Table 1 Meaning areas and total selection of area by gender
The theoretical basis for this study was the perceptual cognitive model of self-regulation (Leventhal, Leventhal, & Contrada, 1998). This theoretical construct is applicable in chronic illness and is specific to patient-centered care. Leventhal et al. (1998) proposed that people are active problem solvers, context shapes the problem solving process, and what is perceived as the most urgent threat to health is what motivates health behavior. This is important because coping skills and MIL are flexible and can change based on an individual’s perception of their environment and representations of reality (Leventhal et al., 1998; Sjolie, 2002).
Meaning area
Methodology Design This study was developed as a cross-sectional pilot study.
Description of sample Using a convenience sample of hospitalized patients admitted with a diagnosis of CHF, 44 eligible subjects were approached, 32 subjects agreed to participate and were enrolled. Sixteen additional patients admitted with CHF were either unavailable to approach for consent or did not meet eligibility requirements. Patients in intensive care units were not considered. To be included in the study, patients were over the age of 40 with an admitting diagnosis of CHF. Patients were excluded if either the primary care nurse or researcher deemed they were too ill to participate, unable to speak conversational English, or had a diagnosis of dementia or unstable mental illness. The patients’ primary care nurse informed eligible hospitalized patients of the study. If a verbal willingness to participate in the study was given to the nurse, the principle investigator (PI) or research assistant obtained informed consent. After institutional review board approval from the study site and the associated academic institution, subject enrollment and data collection were completed over a 4-month period, beginning November 2010 through February 2011. Subjects’ ages ranged from 43 to 99.
Method of measurement The Schedule for Meaning in Life Evaluation (SMiLE) is a respondent-generated instrument designed by Fegg and colleagues to assess an individual’s MIL. The tool allows subjects to list areas of ”meaning” and quantitatively measures the importance of each area and the patient’s level of satisfaction with each area. The tool has a 72
Males Females
Family 14 Social relationships 0 Leisure time 8 Finances 2 Health 7 Nature/animals 8 Hedonism 4 Personal growth 1
15 4 5 2 8 5 3 0
Meaning area Partnership Occupation Home/garden Spirituality Satisfaction Social commitments Art/culture
Males Females 6 2 3 6 0 3 1
1 0 1 11 0 1 2
test–retest reliability of 0.72 (p < .001). Convergent validity has been tested with Purpose in Life test (r = .48, p < .001), self-transcendence scale (r = .34, p < .001), and general numeric scale on MIL (r = .53, p < .001; Fegg, Kramer, L’hoste, & Borasio, 2008). Levels of satisfaction for each area are scored by subjects on a 7-point Likert scale with −3 being “very unsatisfied” and +3 being “very satisfied.” Weight/importance of each area are scored by subjects on a 7-point adjectival scale with 0 being “not important” and 7 being “extremely important.” Mean values for index of satisfaction (IoS) and index of weight (IoW) are then calculated. Satisfaction scores and scores of weight for each subject are recalculated to identify a score between 0 and 100. Total scores for IoS and IoW are combined to identify the index of weighted satisfaction (IoWS) score, or SMiLE score (0–100). The SMiLE is a quantitative measure of subjects’ overall satisfaction with areas they identified as meaningful. Total SMiLE score takes into consideration that areas identified as less important should potentially have less impact on a person’s overall life satisfaction. Areas of meaning identified by subjects were categorized and recorded according to the previous work of the SMiLE developer (see Table 1 for categories and selection by gender).
Data collection process The SMiLE survey was a completed interview style by the researcher to alleviate unnecessary patient burden and to assure consistency in tool use. The SMiLE instructs subjects to identify one to seven areas in their lives that provide meaning, or that they consider make their life worth living. To facilitate patients’ identification of meaningful areas, identical examples of possible areas were provided for each subject. Examples offered to subjects included jobs, relationships, spending time outdoors, hobbies, pets, or any type of spirituality.
Results Study participants were evenly divided by gender, 50% married, 21.9% divorced, and 18.8% widow/widower.
Meaning in life
I. T. Mello & A. S. Ashcraft
Figure 1 SMiLE scores by gender.
The remaining 9.4% were either never married or in a committed relationship. Number of hospital admissions for CHF ranged from one (21.9%) to six or more (25%). Mean years since initial CHF diagnosis was 2.59 (SD = 1.898). The majority of subjects had a high school diploma, or equivalency, although education ranged from eighth grade or less (12.5%) to completion of a graduate degree (6.3%). The majority of subjects (71.9%) resided in the county in which the study was conducted. The majority of subjects (78.1%) had some type of assistance with coordinating their health care; this assistance ranged from spouses or other family to home health providers. Three subjects were residents in assisted living facilities. Average income was low, 68.8% had an annual income of $34,999 or less, 56.3% had healthcare costs covered by Medicare and a supplemental insurance, 9.4% were covered by Medicare/Medicaid, and 6.3% were self-pay. The majority (62.5%) had some routine CHF symptoms, such as shortness of breath, edema, or decreased activity tolerance. Data were analyzed using SPSS Gradpak 17.0 (IBM SPSS Gradpack 17.0, IBM, Armonk, New York). The mean SMiLE score for this sample population was 79.37 (SD = 20.285). Males had a higher mean SMiLE score of 83.24 compared to the mean of females of 75.49 (SD = 21.143; see Figure 1 for graph of scores). SMiLE scores were not normally distributed and ranged from 33.3 to 100. Independent sample t-test revealed no significant difference in SMiLE mean based on gender, t(30) = 1.083, p = .287. Pearson’s chi-square identified a statis R
R
tically significant correlation between gender of respondents and the presence of routine CHF symptoms (chisquare (1) = 4.80, p = .028). Chi-square correlations were run on additional nominal data. Because of small cell size, a Cramer’s V was subsequently calculated, finding a statistically significant correlation between both the number of years since diagnosis and the number of hospital admissions (Cramer’s V = .542, p = .005), and the number of admissions and the presence of routine CHF symptoms (Cramer’s V .657, p = .017). No other correlations in data were identified.
Discussion The purpose of this study was to examine MIL in patients recently hospitalized with CHF. The SMiLE was developed to measure MIL; this study is the first study using the tool in patients with CHF. Because the application of patient-centered care and utilization of patient priorities has the potential to improve patient and family satisfaction in the final stages of life, healthcare providers must identify methods to adequately address patients’ priorities. Not all patients desire aggressive care methods in later stages of life. Healthcare providers knowing, and implementing, patients’ values and priorities into treatment plans could decrease CHF readmissions and healthcare costs. Patient/provider partnerships must include patients’ expectations and personal needs (Harkness, 2005). True patient-centered care will ultimately reflect on patient 73
Meaning in life
satisfaction outcomes as required by Medicare’s recent implementation of value-based purchasing (VBP). This small pilot study identified the SMiLE survey to be a valuable tool for assisting patients with CHF in identifying their individual MIL. Three major findings were identified.
Patient provider communication The interview format allowed for patient reflection and discussion. During study interviews, two patients noted how valuable the thought process was during their identification of meaningful areas. By helping patients identify their MIL, they have the opportunity to identify and organize their life priorities. Subjects discussed how meaningful areas, satisfaction with those areas, and the importance of those areas had evolved with lifestyle changes that ultimately occurred since their diagnosis with CHF. This type of discussion encourages patient involvement in decision making and could provide opportunities to develop individualized interventions and improve the quality of care, based on patient specific values and SMiLE scores.
Demographics The variations in SMiLE scores and demographics provided insight into the broad scope and effect of CHF. Researchers expected to identify more commonalities in the sample; however, demographic data revealed the indiscriminate effect of CHF. The pilot study sample ranged in age 43 to 99; education ranged from illiteracy to completion of graduate degrees; and annual income ranged from
