“Every part of me has changed”—shared lived experiences of adolescents living with cancer in Zambia

Sibulwa, Sharleen; Chansa-Kabali, Tamara; Hapunda, Given

doi:10.1177/2055102919833537

Cited by 6 publications

(13 citation statements)

References 52 publications

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“…As many researchers focus on health-related interventions ( Baldwin et al, 2017 ; Fredrickson, 2000 ; Gick, 2011 ; Hilton and Johnston, 2017 ; Lai and Ma, 2016 ; Lennefer et al, 2019 ; Luthans et al, 2006 ; Ryff et al, 2015 ; Sibulwa et al, 2019 ), we hope that our study at least humbly contributed to the understanding of the association between the number of diseases, psychological capital, and psychological wellbeing, and this might have an added value for health intervention planning. We hope that this research provided some empirical evidence to implement health-related PsyCap or similar interventions on a large scale as strong self-efficacy, hope and resilience proved to be beneficial for the health of people of different ages ( Fredrickson, 2000 ; Luthans et al, 2006 ; Marsh et al, 2019 ; Ueno et al, 2020 ; Van Dick et al, 2017 ; Varas et al, 2019 ).…”

Section: Discussionmentioning

confidence: 92%

“…Based on the literature, we have chosen to investigate a sample of adults, and we assumed that any illness experience diminishes psychological wellbeing as psychological wellbeing is related to health ( Boehm and Kubzansky, 2012 ; Cimpean and David, 2019 ; Costanzo et al, 2009 ; Di Giuseppe et al, 2019 ; Fredrickson, 2000 ; Gick, 2011 ; Lai and Ma, 2016 ; Levin, 2013 ; Ma and Lai, 2018 ; Mittag et al, 2016 ; Røysamb et al, 2003 ; Schöllgen et al, 2016 ; Sibulwa et al, 2019 ; Staudinger et al, 1999 ; Wiest et al, 2011 ).…”

Section: Discussionmentioning

confidence: 99%

“…A lot of research investigated psychological outcomes of illness ( Besharat et al, 2018 ; Boehm and Kubzansky, 2012 ; Costanzo et al, 2009 ; Di Giuseppe et al, 2019 ; Hall et al, 2010 ; Mittag et al, 2016 ; Sibulwa et al, 2019 ; Wiest et al, 2011 ). Results vary from one disease to another, but the most relevant questions are: What factors determine psychological wellbeing in illness and health?…”

Section: Introductionmentioning

confidence: 99%

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Self-reported health-related experiences, psychological capital, and psychological wellbeing in Lithuanian adults sample

Diržytė

Perminas

2021

Health Psychology Open

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The purpose of this research was to examine psychological wellbeing and psychological capital in groups of subjectively healthy and unhealthy individuals and identify significant associations. We have analyzed the results of a Lithuanian representative sample of adults ( n = 1001). Results showed that adult respondents who reported the absence of cardiovascular diseases, nervous system diseases, autoimmune diseases, diabetes, vision disorders, physical or mental disability, and substance abuse demonstrated significantly higher scores for flourishing, life satisfaction, psychological capital, self-efficacy, hope, and resilience. The model on associations between the number of reported diseases, psychological capital, and wellbeing in the representative sample of adults (χ2 = 110.786, df = 16; CFI = .981; RMSEA = .077; NFI = 0.978; TLI = 0.968) indicated that a higher number of diseases (per person) predicts a weakening effect on psychological capital, while psychological capital predicts psychological wellbeing.

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Section: Discussionmentioning

confidence: 92%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Self-reported health-related experiences, psychological capital, and psychological wellbeing in Lithuanian adults sample

Diržytė

Perminas

2021

Health Psychology Open

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“…In the qualitative studies, however, treatment burden accounted for 15.4% (40/260) of all quotations assigned to the psychological domain and was covered in every fourth study (12/45) [ 31 – 42 ]. Children for example told the interviewer that ‘[…] when the nurse told me that I would have to undergo LP, I thought that it is a surgery, so I was really scared ’ [ 38 ] that they were ‘ afraid of unsuccessful treatment ’ [ 42 ] or ‘ fed up […] with medication and chemo[-therapy] I have to undergo ’ [ 34 ].…”

Section: Resultsmentioning

confidence: 99%

“…Aspects of treatment involvement were covered in 12 questionnaires (12/96, 12.5%; R-PIE, USK, CUIS, QOLCC, LSS-C, CICS, PAC-QOL, PedsQL Child—cancer/transplant module, TQPM, DISABKIDS DCGM, MANE) and accounted for 13.8% (64/463) of items on social health. The focus on this subscale was even more pronounced in qualitative studies: every fourth quotation addressing social health related to treatment involvement (44/170, 25.9%) and the topic was raised in 17 of the 45 (37.8%) qualitative studies [ 32 , 34 , 36 , 38 – 41 , 48 – 57 ]. One child, for example, explained the need for information by stating ‘The doctor explains each procedure that I have to undergo, everything that I have to go through.…”

Section: Resultsmentioning

confidence: 99%

Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies

Rothmund

Sodergren²,

Rohde³

et al. 2022

Qual Life Res

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Background Health-related quality of life (HRQOL) is a key concept in pediatric oncology. This systematic review aims to update the conceptual HRQOL model by Anthony et al. (Qual Life Res 23(3):771–789, 2014), covering physical, emotional, social and general HRQOL aspects, and to present a comprehensive overview of age- and disease-specific HRQOL issues in children with cancer. Methods Medline, PsychINFO, the Cochrane Database for Systematic Reviews (CDSR), and the COSMIN database were searched (up to 31.12.2020) for publications using patient-reported outcome measures (PROMs) and qualitative studies in children with cancer (8–14-year) or their parents. Items and quotations were extracted and mapped onto the conceptual model for HRQOL in children with cancer mentioned above. Results Of 2038 identified studies, 221 were included for data extraction. We identified 96 PROMS with 2641 items and extracted 798 quotations from 45 qualitative studies. Most items and quotations (94.8%) could be mapped onto the conceptual model. However, some adaptations were made and the model was complemented by (sub)domains for ‘treatment burden’, ‘treatment involvement’, and ‘financial issues’. Physical and psychological aspects were more frequently covered than social issues. Discussion This review provides a comprehensive overview of HRQOL issues for children with cancer. Our findings mostly support the HRQOL model by Anthony et al. (Qual Life Res 23(3):771–789, 2014), but some adaptations are suggested. This review may be considered a starting point for a refinement of our understanding of HRQOL in children with cancer. Further qualitative research will help to evaluate the comprehensiveness of the HRQOL model and the relevance of the issues it encompasses.

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Measuring public attitudes towards people living with chronic diseases in Arabic-speaking populations: adaptation and development of the Social Stigma Scale of Chronic Diseases (SSS-CD)

et al. 2023

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Background A large proportion of the population in Arab countries suffer from chronic diseases. According to the statistics by the Global Health Estimates, chronic illnesses contribute by 71% to total deaths in the Arab region. While chronic illnesses have been demonstrated to carry high levels of social stigma, it is only recently that little research attention has been given to this topic in the Arab world. It is well-established that the social stigma construct is culturally-dependent. Therefore, the lack of an Arabic measure highlighted the urgent need for developing a culturally adapted and valid instrument to assess social stigma toward people living with chronic diseases. In this study, we aimed to examine the psychometric properties of the Arabic translation, adaptation and development of “the Social Stigma Scale of Chronic Diseases” (SSS-CD). Method Fifteen items derived from the literature and assessing social stigma towards chronic diseases have been administered to 570 Arabic-speaking adults from the Lebanese general population (aged 24.59 ± 6.75years; 68.6% women). Items were translated into Arabic using a forward-backward translation method. Exploratory factor analysis (EFA) using a principal-axis EFA on the first split-half subsample, followed by a confirmatory factor analysis (CFA) tested on the model extracted from the EFA on the second split-half subsample, were conducted to examine the construct validity of the SSS-CD. Fit indices were deemed adequate if the normed model chi-square (χ²/df) ≤ 3, the Steiger-Lind root mean square error of approximation (RMSEA) ≤ 0.08, the Tucker-Lewis Index (TLI) and the comparative fit index (CFI) ≥ 0.90. Results Findings revealed that the 10-item SSS-CD has a unidimensional factor structure, with the following fit indices: χ2/df = 92.95/34 = 2.73, RMSEA = 0.077 (90% CI 0.059, 0.096), SRMR = 0.062, CFI = 0.939, TLI = 0.919. A good internal consistency was demonstrated by a McDonald’s omega value of 0.73 for the total score. Findings also supported invariance across gender, with men exhibiting higher levels of social stigma attached to chronic diseases than women. All three dimensions of stigmatization (social, psychological and evolutionary stigmatization) were positively correlated with SSS-CD scores (Social self-interest [r = .40; p < .001], Evolutionary self-interest [r = .37; p < .001], Psychological self-interest [r = .42; p < .001]), demonstrating relatively strong convergent validity. Conclusion Our findings suggest that the SSS-CD has robust psychometric qualities. We thus preliminarily suggest that the scale is valid, reliable and suitable for use among Arabic-speaking people from the general population to measure public attitudes towards people living with chronic diseases. Providing this psychometrically sound measure will hopefully enable to foster research in this area in order to draw a clear overview of the prevalence and characteristics of social stigma attached to chronic diseases in Arabic-speaking communities. However, given that this was the first study to examine the psychometric properties of the SSS-CD, the present findings and conclusions should be considered tentative pending future cross-national validation studies.

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“Every part of me has changed”—shared lived experiences of adolescents living with cancer in Zambia

Cited by 6 publications

References 52 publications

Self-reported health-related experiences, psychological capital, and psychological wellbeing in Lithuanian adults sample

Self-reported health-related experiences, psychological capital, and psychological wellbeing in Lithuanian adults sample

Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies

Measuring public attitudes towards people living with chronic diseases in Arabic-speaking populations: adaptation and development of the Social Stigma Scale of Chronic Diseases (SSS-CD)

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