Quality of Life for Older Cancer Patients: Relation of Psychospiritual Distress to Meaning-Making During Dignity Therapy

Background: Nearly 500,000 older Americans die a cancer-related death annually. Best practices for seriously ill patients include palliative care that aids in promoting personal dignity. Dignity Therapy is an internationally recognized therapeutic intervention designed to enhance dignity for the seriously ill. Theoretically, Dignity Therapy provides opportunity for patients to make meaning by contextualizing their illness within their larger life story. The extent to which Dignity Therapy actually elicits meaning-making from patients, however, has not been tested. Aim: The current study examines (i) extent of patient meaning-making during Dignity Therapy, and (ii) whether baseline psychospiritual distress relates to subsequent meaning-making during Dignity Therapy. Design: Participants completed baseline self-report measures of psychospiritual distress (i.e., dignity-related distress, spiritual distress, quality of life), before participating in Dignity Therapy. Narrative analysis identified the extent of meaning-making during Dignity Therapy sessions. Participants: Twenty-five outpatients ( M age = 63, SD = 5.72) with late-stage cancer and moderate cancer-related symptoms were recruited. Results: Narrative analysis revealed all patients made meaning during Dignity Therapy but there was wide variation (i.e., 1—12 occurrences). Patients who made greater meaning were those who, at baseline, reported significantly higher psychospiritual distress, including greater dignity-related distress ( r = .46), greater spiritual distress ( r = .44), and lower quality of life ( r = -.56). Conclusion: Meaning-making was found to be a central component of Dignity Therapy. Particularly, patients experiencing greater distress in facing their illness use the Dignity Therapy session to express how they have made meaning in their lives.

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Narrative meaning making and integration: Toward a better understanding of the way falling ill influences quality of life

Journal of Health Psychology ◽

10.1177/1359105317731823 ◽

2017 ◽

Vol 25 (6) ◽

pp. 738-754 ◽

Cited By ~ 1

Author(s):

Iris Hartog ◽

Michael Scherer-Rath ◽

Renske Kruizinga ◽

Justine Netjes ◽

José Henriques ◽

...

Keyword(s):

Quality Of Life ◽

Meaning Making ◽

The Self ◽

Life Goals ◽

Self Report ◽

Personal Goals ◽

Life Event ◽

Seriously Ill ◽

The Way

Falling seriously ill is often experienced as a life event that causes conflict with people’s personal goals and expectations in life and evokes existential questions. This article presents a new humanities approach to the way people make meaning of such events and how this influences their quality of life. Incorporating theories on contingency, narrative identity, and quality of life, we developed a theoretical model entailing the concepts life event, worldview, ultimate life goals, experience of contingency, narrative meaning making, narrative integration, and quality of life. We formulate testable hypotheses and describe the self-report questionnaire that was developed based on the model.

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Predicting Post-Trauma Quality of Life: Meaning-Making Trumps Medical Reality

PsycEXTRA Dataset ◽

10.1037/e517302011-545 ◽

2008 ◽

Author(s):

Ed De St. Aubin ◽

Abbey Valvano ◽

Terri Deroon-Cassini ◽

Jim Hastings ◽

Patricia Horn

Keyword(s):

Quality Of Life ◽

Meaning Making ◽

Life Meaning

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The Vietnamese Version of the Health-related Quality of Life Measure for Children with Epilepsy (CHEQOL-25): Reliability

MedPharmRes ◽

10.32895/ump.mpr.1.1.9/suffix ◽

2017 ◽

Vol 1 (1) ◽

pp. 9-14

Author(s):

Tri Doan ◽

Tuan Tran ◽

Han Nguyen ◽

◽

...

Keyword(s):

Quality Of Life ◽

Good Practice ◽

The Self ◽

Self Report ◽

Health Related Quality ◽

Life Measure ◽

Related Quality ◽

Health Related ◽

Parent Proxy

Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability. Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally adapted into Vietnamese by using the Principles of Good Practice for the Translation and Cultural Adaptation Process. The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was determined by using Cronbach’s coefficient α and intra-class correlation coefficient (ICC). Results: Both Vietnamese versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to understand for Vietnamese children and parents. Thus, no further modification was required. Cronbach’s α coefficient for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and 0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and parent-proxy CHEQOL-25 were the first questionnaires about quality of life of epileptic children in Vietnam. This Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.

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Occupational groups and its physical and mental health correlates: results from the Singapore Mental Health Study 2016

International Archives of Occupational and Environmental Health ◽

10.1007/s00420-021-01741-8 ◽

2021 ◽

Author(s):

Rajeswari Sambasivam ◽

Anitha Jeyagurunathan ◽

Edimansyah Abdin ◽

Saleha Shafie ◽

Sherilyn Chang ◽

...

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Work Productivity ◽

Demographic Characteristics ◽

Self Report ◽

World Health ◽

Physical Disorder ◽

Occupational Groups ◽

Physical Disorders

Abstract Purpose The physical and mental wellbeing of an individual is impacted by the type occupation one does. This study aims to establish the prevalence of mental and physical disorders, the association of occupational groups and health-related quality of life, and the extent of work-loss and work-cut back in past 30 days among the employed in the Singapore resident population. Methods Data from a population-based, epidemiological survey of a representative sample of Singapore citizens and permanent residents aged 18 years and above were used. Lifetime diagnosis of select mental disorders was established using the World Health Organization’s Composite International Diagnostic Interview version 3.0 (WHO-CIDI 3.0). Data on nicotine dependence, work productivity, quality of life and socio-demographics were obtained via self-report. Ten major occupational groups based on the Singapore Standard Occupational Classification were included in the analysis. Results The sample comprised 4021 employed individuals who were predominantly males (54.7%) and aged 35–49 years (35.4%). ‘Service and sales workers’ (22.6%), ‘Professionals’ (17.3%) and ‘Legislators, senior officials and managers’ (16.4%) were the three largest occupational groups. Socio-demographic characteristics differed significantly (p < 0.001) across all occupational groups. Lifetime prevalence of mood disorders among the employed was 8.4% and the most prevalent physical disorder was chronic pain (18.9%). No significant differences were observed in work productivity loss across the occupational groups. Conclusions The disparities in the socio-demographic characteristics and prevalence of mental and physical disorders across occupational categories provide policymakers with vital information to pilot effective interventions that can improve the psychosocial and physical conditions at work.

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Quality of life in multiple sclerosis patients in Spain

Multiple Sclerosis Journal ◽

10.1191/1352458502ms851oa ◽

2002 ◽

Vol 8 (6) ◽

pp. 527-531 ◽

Cited By ~ 20

Author(s):

C-H Chang ◽

D Cella ◽

O Fernández ◽

G Luque ◽

P de Castro ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Sclerosis ◽

Well Being ◽

Cross Sectional Study ◽

Self Report ◽

Regression Analyses ◽

Cross Sectional ◽

Scale Scores ◽

Multiple Sclerosis Patients

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.

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Mindfulness-based stress reduction for people with chronic diseases

Australian Journal of Primary Health ◽

10.1071/py09063 ◽

2010 ◽

Vol 16 (3) ◽

pp. 200 ◽

Cited By ~ 59

Author(s):

Monika Merkes

Keyword(s):

Quality Of Life ◽

Chronic Diseases ◽

Stress Reduction ◽

Well Being ◽

Multiple Chemical Sensitivity ◽

Self Report ◽

Original Research ◽

Mindfulness Based Stress Reduction ◽

The Impact

Mindfulness-based stress reduction (MBSR) is a structured group program that uses mindfulness meditation to improve well-being and alleviate suffering. This article reviews the impact of MBSR for people with chronic diseases. The review includes original research that was published in English and peer-reviewed and reported outcomes for adults with chronic diseases who had participated in an MBSR program. Fifteen studies were identified. Outcomes related to mental and physical health, well-being, and quality of life. The studies included different research designs, and used self-report and physiological outcome measures. Participants’ clinical diagnoses included fibromyalgia, chronic pain, rheumatoid arthritis, type 2 diabetes, chronic fatigue syndrome, multiple chemical sensitivity, and cardiovascular diagnoses. All 15 studies found that participation in an MBSR program resulted in improvements. No negative change was reported between baseline and follow up. Outcomes in regard to specific variables were difficult to compare and equivocal. Overall, positive change predominated. Chronic diseases are associated with a range of unwelcome psychological and physical consequences. Participation in an MBSR program is likely to result in coping better with symptoms, improved overall well-being and quality of life, and enhanced health outcomes. As an adjunct to standard care, MBSR has potential for much wider application in Australian primary care settings.

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Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-020-00238-1 ◽

2020 ◽

Vol 4 (1) ◽

Author(s):

Jason A. Randall ◽

Aiste Guobyte ◽

Laure Delbecque ◽

Louise Newton ◽

Tara Symonds ◽

...

Keyword(s):

Quality Of Life ◽

Ulcerative Colitis ◽

Lived Experience ◽

Thematic Analysis ◽

Gastrointestinal Disease ◽

The United States ◽

Self Report ◽

Related Quality ◽

High Level

Abstract Background Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one’s most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2–11 years) living with UC. Methods Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5–11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2–4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis. Results Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life. Conclusions Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8–11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8–11 years age group.

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Quality of life in Hungarian patients with cystic fibrosis

Orvosi Hetilap ◽

10.1556/oh.2013.29612 ◽

2013 ◽

Vol 154 (20) ◽

pp. 784-791 ◽

Cited By ~ 2

Author(s):

Réka Bodnár ◽

Klára Holics ◽

Rita Ujhelyi ◽

László Kádár ◽

Lajos Kovács ◽

...

Keyword(s):

Quality Of Life ◽

Cystic Fibrosis ◽

Self Report ◽

Clinical Severity ◽

Proxy Report ◽

Parent Proxy Report ◽

Multisystemic Disease ◽

Cystic Fibrosis Questionnaire ◽

Parent Proxy

Introduction: Cystic fibrosis is a progressive multisystemic disease which affects the quality of life of patients. Aim: The aim of the study was to evaluate quality of life in Hungarian patients with cystic fibrosis. Methods: Validated Hungarian translation of The Cystic Fibrosis Questionnaire – Revised was used to measure quality of life. Clinical severity was determined on the basis of Shwachman–Kulczycki score. Lung function was measured using spirometry. Results: 59 patients were included from five centres in Hungary. The relationships between 8–13 year-old children self-report and parent proxy report was 0.77 (p<0.001) in physical functioning, 0.07 (p<0.001) in emotional functioning, 0.51 (p<0.001) in eating, 0.21 (p<0.001) in treatment burden, 0.54 (p<0.001) in body image, 0.49 (p<0.001) in respiratory symptoms and 0.40 (p<0.001) in digestive symptoms domains. Conclusions: In contrast to physical domains weak correlations were observed between answers obtained from children and their parents in psychosocial domains. The perception of both patients and their parents should be assessed when measuring quality of life in paediatric patients with cystic fibrosis. Orv. Hetil., 2013, 154, 784–791.

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Quality of life outcomes in sarcoma patients receiving care at a tertiary center.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.e23557 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. e23557-e23557

Author(s):

Jonathan R. Day ◽

Benjamin Miller ◽

Sarah L. Mott ◽

Bradley T. Loeffler ◽

Munir Tanas ◽

...

Keyword(s):

Quality Of Life ◽

Radiation Treatment ◽

Soft Tissue Sarcomas ◽

Well Being ◽

Self Report ◽

University Of Iowa ◽

Treatment Type ◽

Tertiary Center ◽

Multiple Domains

e23557 Background: Sarcomas are a diverse group of neoplasms that vary greatly in clinical presentation and responsiveness to treatment. Given the differences in the sites of involvement, rarity, and treatment modality, a multidisciplinary approach is required. Previous literature suggests patients with sarcoma suffer from poorer quality of life (QoL) especially physical and functional well-being. This study aims to understand if there is an association between treatment at a tertiary sarcoma center and a difference in QoL. Methods: De-identified data was obtained from the Sarcoma Tissue Repository at University of Iowa. Mixed effects regression models were utilized to evaluate the association between disease and treatment characteristics and QoL. QoL was assessed using the self-report FACT-G questionnaire at 12-, 24-, and 36-months post-diagnosis; overall scores and the 4 well-being subscales (Physical, Emotional, Social, Functional) were calculated. Results: 443 patients were identified. Soft tissue sarcomas were more prevalent (87.6%) than bone (12.4%). 53% of patients received chemotherapy and 38.6% got radiation therapy. Sarcomas were most frequently located in the lower extremities(ext.) (33.1%), followed by abdomen (20.9%), pelvic (13.6%), upper ext. (13.1%), thorax (11.3%), head & neck (7.8%). For ext. sarcoma; lower ext: 144 (71.3%), Upper ext: 58 (28.7%). Patients with extremity sarcoma; 133 had limb sparing and 48 had amputations. FACT-G Scores did not appreciably vary between 12, 24-, and 36-month for any QoL responses. Overall well-being had a mean score reported of 87.7 (sd = 15.7). Social well-being sores averaged 23.5 (5.0). Emotional well-being (EWB) 19.2 (4.1) and functional well-being (FWB) 21.3 (6.1), and physical well-being (PWB) 23.7 (4.6). There was no association between overall, PWB, EWB, or FWB with the histological subtype, radiation treatment, type of limb surgery, or any location in the same patients over time. Chemotherapy treatments were associated with lower well-being in multiple domains; PWB scores being 2.01 points lower, (p < 0.01), EWB scores being 1.27 points lower (p = 0.01) and FWB scores being 1.72 (p = 0.03), and 4.44 points lower overall (p = 0.03), on average, after adjusting for overall changes across time. Patients with ext. sarcoma only overall FACT-G scores differed 6.72 points higher for upper ext. than lower ext (p = 0.04). Conclusions: Overall QoL areas were similar to normative FACT-G scores both overall and specific areas. Having received chemotherapy was associated with lower well-being scores physically, emotionally, functionally, and overall. There were no clinically relevant differences reported in QoL scores between 12-,24-, and 36-months in the same patients. Further work is needed to describe QoL differences among patients with sarcoma at tertiary centers and examine what protective factors may influence patient well-being.

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