Top

Published in:

01-12-2019 | Original Paper

Measuring Spiritual Well-Being in Brazilian Adolescents with Chronic Illness Using the FACIT-Sp-12: Age Adaptation of the Self-Report Version, Development of the Parental-Report Version, and Validation

Authors: Willyane Andrade de Alvarenga, Lucila Castanheira Nascimento, Claudia Benedita dos Santos, Ana Carolina Andrade Biaggi Leite, Holger Mühlan, Silke Schmidt, Monika Bullinger, Emília Campos de Carvalho, Jason Bredle, Benjamin Arnold, Robson de Castro Coelho, Margarida Vieira

Published in: Journal of Religion and Health | Issue 6/2019

Abstract

Spiritual well-being is a major issue in health care, but instruments for measuring this construct in adolescents are lacking. This study adapted the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp-12) for use with Brazilian adolescents with chronic diseases and developed a parental observer-rated version, using an expert panel, back-translation, and cognitive interviews with 72 participants. The psychometric properties of both versions were verified with two- and three-factor models by testing with 212 participants. The self- and parental-reported versions showed face validity, content validity, and acceptable levels of internal consistency for the overall scale and the two-factor model. The convergent validity was satisfactory for most items in both two- and three-factor models, but there was a lack of discrimination in the three-factor model using multitrait–multimethod analysis. This study presents the first instrument to assess the spiritual well-being of adolescents from their point of view and to allow their parents to serve as evaluators. However, we recommend further psychometric testing of the self- and parental-report scales to assess spiritual well-being in adolescents with chronic diseases in Brazil.

Amado, D. M., Beamon, D. A., & Sheehan, D. V. (2014). Linguistic validation of the pediatric versions of the Sheehan suicidality tracking scale (S-STS). Innovations in Clinical Neuroscience,11(9–10), 141–163.PubMedPubMedCentral

Ando, M., Marquez-Wong, F., Simon, G. B., Kira, H., & Becker, C. (2015). Bereavement life review improves spiritual well-being and ameliorates depression among American caregivers. Palliative and Supportive Care,13(2), 319–325. https://doi.org/10.1017/S1478951514000030.CrossRefPubMed

Bredle, J. M., Salsman, J. M., Debb, S. M., Arnold, B. J., & Cella, D. (2011). Spiritual well-being as a component of health-related quality of life: The functional assessment of chronic illness therapy—spiritual well-being scale (FACIT-Sp). Religions,2(4), 77–94. https://doi.org/10.3390/rel2010077.CrossRef

Cameirão, M. L., & Vicente, S. G. (2010). Age-of-acquisition norms for a set of 1,749 Portuguese words. Behavior Research Methods,42(2), 474–480. https://doi.org/10.3758/BRM.42.2.474.CrossRefPubMed

Canada, A. L., Murphy, P. E., Fitchett, G., Peterman, A. H., & Schover, L. R. (2008). A 3-factor model for the FACIT-Sp. Psycho-Oncology,17(9), 908–916. https://doi.org/10.1002/pon.1307.CrossRefPubMed

Cotton, S., Grossoehme, D., Rosenthal, S. L., McGrady, M. E., Roberts, Y. H., Hines, J., et al. (2009a). Religious/spiritual coping in adolescents with sickle cell disease: A pilot study. Journal of Pediatric Hematology/oncology,31(5), 313–318. https://doi.org/10.1097/MPH.0b013e31819e40e3.CrossRefPubMedPubMedCentral

Cotton, S., Humenay Roberts, Y., Tsevat, J., Britto, M. T., Succop, P., McGrady, M. E., et al. (2010a). Mind–body complementary alternative medicine use and quality of life in adolescents with inflammatory bowel disease. Inflammatory Bowel Diseases,16(3), 501–506. https://doi.org/10.1002/ibd.21045.CrossRefPubMedPubMedCentral

Cotton, S., Kudel, I., Roberts, Y. H., Pallerla, H., Tsevat, J., Succop, P., et al. (2009b). Spiritual well-being and mental health outcomes in adolescents with or without inflammatory bowel disease. Journal of Adolescent Health,44(5), 485–492. https://doi.org/10.1016/j.jadohealth.2008.09.013.CrossRefPubMed

Cotton, S., McGrady, M. E., & Rosenthal, S. L. (2010b). Measurement of Religiosity/Spirituality in Adolescent Health Outcomes Research: Trends and Recommendations. Journal of Religion and Health,49(4), 414–444. https://doi.org/10.1007/s10943-010-9324-0.CrossRefPubMedPubMedCentral

Cotton, S., Weekes, J. C., McGrady, M. E., Rosenthal, S. L., Yi, M. S., Pargament, K., et al. (2012). Spirituality and religiosity in urban adolescents with Asthma. Journal of Religion and Health,51(1), 118–131. https://doi.org/10.1007/s10943-010-9408-x.CrossRefPubMedPubMedCentral

Damsma Bakker, A., van Leeuwen, R. R., & Roodbol, P. F. (2018). The spirituality of children with chronic conditions: A qualitative meta-synthesis. Journal of Pediatric Nursing,43, e106–e113. https://doi.org/10.1016/j.pedn.2018.08.003.CrossRefPubMed

Daniel, W. W. (1990). Applied nonparametric statistics (2nd ed.). Boston: PWS- Kent Publishing.

de Meezenbroek, E. J., Garssen, B., van den Berg, M., van Dierendonck, D., Visser, A., & Schaufeli, W. B. (2012). Measuring spirituality as a universal human experience: A review of spirituality questionnaires. Journal of Religion and Health,51(2), 336–354. https://doi.org/10.1007/s10943-010-9376-1.CrossRef

DISABKIDS. (2004). Translation & validation procedure: Guidelines and documentation form. The DISABKIDS Group. Hamburgo: The Disabkids Group Europe.

DISABKIDS. (2018). Project collaborators. Retrieved July 10, 2017, from https://www.disabkids.org/disabkids-project/project-collaborators/.

Draper, P. (2012). An integrative review of spiritual assessment: Implications for nursing management. Journal of Nursing Management,20(8), 970–980. https://doi.org/10.1111/jonm.12005.CrossRefPubMed

Edmondson, D., Park, C. L., Blank, T. O., Fenster, J. R., & Mills, M. A. (2008). Deconstructing spiritual well-being: Existential well-being and HRQOL in cancer survivors. Psycho-Oncology,17(2), 161–169. https://doi.org/10.1002/pon.1197.CrossRefPubMed

Fayers, P. M., & Machin, D. (2007). Quality of Life: The assessment, analysis and interpretation of patient-reported outcomes (2nd ed.). Chichester, UK: John Wiley & Sons, Ltd. https://doi.org/10.1002/9780470024522.

Ferrer, M., Alonso, J., Prieto, L., Plaza, V., Monsó, E., Marrades, R., et al. (1996). Validity and reliability of the St George’s Respiratory Questionnaire after adaptation to a different language and culture: The Spanish example. European Respiratory Journal,9(6), 1160–1166. https://doi.org/10.1183/09031936.96.09061160.CrossRefPubMed

Flaskerud, J. H. (2012). Cultural bias and likert-type scales revisited. Issues in Mental Health Nursing,33(2), 130–132. https://doi.org/10.3109/01612840.2011.600510.CrossRefPubMed

Fowler, J. W. (1981). Stages of faith: The psychology of human development and the quest for meaning. San Francisco: HarperOne.

Furr, R. M., & Bacharach, V. R. (2014). Psychometrics: An introduction (2nd ed.). Los Angeles: SAGE Publications.

Greenfield, B., Filip, C., Schiffrin, A., Bond, M., Amsel, R., & Zhang, X. (2013). The scales of psychological capacities: Adaptation to an adolescent population. Psychotherapy Research,23(2), 232–246. https://doi.org/10.1080/10503307.2012.735776.CrossRefPubMed

Guillemin, F., Bombardier, C., & Beaton, D. (1993). Cross-cultural adaptation of health-related quality of life measures: Literature review and proposed guidelines. Journal of Clinical Epidemiology,46(12), 1417–1432.CrossRef

Hays, R. D., & Hayashi, T. (1990). Beyond internal consistency reliability: Rationale and user’s guide for Multitrait Analysis Program on the microcomputer. Behavior Research Methods, Instruments, & Computers,22(2), 167–175. https://doi.org/10.3758/BF03203140.CrossRef

Hexem, K. R., Mollen, C. J., Carroll, K., Lanctot, D. A., & Feudtner, C. (2011). How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. Journal of Palliative Medicine,14(1), 39–44. https://doi.org/10.1089/jpm.2010.0256.CrossRefPubMedPubMedCentral

Juniper, E. F., Svensson, K., Mörk, A.-C., & Ståhl, E. (2005). Modification of the asthma quality of life questionnaire (standardised) for patients 12 years and older. Health and Quality of Life Outcomes,3, 58. https://doi.org/10.1186/1477-7525-3-58.CrossRefPubMedPubMedCentral

Kristjansson, E. A., Desrochers, A., & Zumbo, B. (2003). Designer’ s corner translating and adapting research: A guide for practitioners. Measurement,35(2), 127–142.

Lethborg, C., Aranda, S., Bloch, S., & Kissane, D. (2006). The role of meaning in advanced cancer: Integrating the constructs of assumptive world, sense of coherence and meaning-based coping. Journal of Psychosocial Oncology,24(1), 27–42. https://doi.org/10.1300/J077v24n01_03.CrossRefPubMed

Lobchuk, M. M., & Vorauer, J. D. (2003). Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences. Social Science and Medicine,57(12), 2379–2384. https://doi.org/10.1016/S0277-9536(03)00132-1.CrossRefPubMed

Lucchetti, G., Lucchetti, A. L. G., de Bernardin Gonçalves, J. P., & Vallada, H. P. (2013a). Validation of the Portuguese version of the functional assessment of chronic illness therapy-spiritual well-being scale (FACIT-Sp 12) among Brazilian psychiatric inpatients. Journal of Religion and Health,54(1), 112–121. https://doi.org/10.1007/s10943-013-9785-z.CrossRef

Lucchetti, G., Lucchetti, A. L. G., & Vallada, H. (2013b). Measuring spirituality and religiosity in clinical research: A systematic review of instruments available in the Portuguese language. Sao Paulo medical journal,131(2), 112–122. https://doi.org/10.1590/S1516-31802013000100022.CrossRefPubMed

Lynn, M. R. (1986). Determination and quantification of content validity. Nursing Research,35(6), 382–386.CrossRef

Martoni, A. A., Varani, S., Peghetti, B., Roganti, D., Volpicella, E., Pannuti, R., et al. (2017). Spiritual well-being of Italian advanced cancer patients in the home palliative care setting. European Journal of Cancer Care. https://doi.org/10.1111/ecc.12677.CrossRefPubMed

Mcdowell, I. (2006). Measuring health: A guide to rating scales and questionnaires (3rd ed.). Oxford: Oxford University Press. https://doi.org/10.1093/aje/155.10.899.CrossRef

Murphy, P. E., Canada, A. L., Fitchett, G., Stein, K., Portier, K., Crammer, C., et al. (2010). An examination of the 3-factor model and structural invariance across racial/ethnic groups for the FACIT-Sp: A report from the American Cancer Society’s Study of Cancer Survivors-II (SCS-II). Psycho-Oncology,19(3), 264–272. https://doi.org/10.1002/pon.1559.CrossRefPubMed

Noguchi, W., Ohno, T., Morita, S., Aihara, O., Tsujii, H., Shimozuma, K., et al. (2004). Reliability and validity of the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp) for Japanese patients with cancer. Supportive Care in Cancer,12(4), 240–245. https://doi.org/10.1007/s00520-003-0582-1.CrossRefPubMed

Pereira, F., & Santos, C. (2011). Adaptação cultural da functional assessment for chronic illness therapy-spiritual well being. Cadernos de Saúde,4(2), 37–45.

Peterman, A. H., Fitchett, G., Brady, M. J., Hernandez, L., & Cella, D. (2002). Measuring spiritual well-being in people with cancer: The functional assessment of chronic illness therapy? Spiritual well-being scale (FACIT-Sp). Annals of Behavioral Medicine,24(1), 49–58. https://doi.org/10.1207/S15324796ABM2401_06.CrossRefPubMed

Peterman, A. H., Reeve, C. L., Winford, E. C., Cotton, S., Salsman, J. M., McQuellon, R., et al. (2014). Measuring meaning and peace with the FACIT–spiritual well-being scale: Distinction without a difference? Psychological Assessment,26(1), 127–137. https://doi.org/10.1037/a0034805.CrossRefPubMed

Qualter, P., Pool, L. D., Gardner, K. J., Ashley-Kot, S., Wise, A., & Wols, A. (2015). The emotional self-efficacy scale: Adaptation and validation for young adolescents. Journal of Psychoeducational Assessment,33(1), 33–45. https://doi.org/10.1177/0734282914550383.CrossRef

Rajmil, L., López, A. R., López-Aguilà, S., & Alonso, J. (2013). Parent–child agreement on health-related quality of life (HRQOL): A longitudinal study. Health and Quality of Life Outcomes,11, 101. https://doi.org/10.1186/1477-7525-11-101.CrossRefPubMedPubMedCentral

Reynolds, N., Mrug, S., Hensler, M., Guion, K., & Madan-Swain, A. (2014). Spiritual coping and adjustment in adolescents with chronic illness: A 2-year prospective study. Journal of Pediatric Psychology,39(5), 542–551. https://doi.org/10.1093/jpepsy/jsu011.CrossRefPubMed

Sidani, S., Guruge, S., Miranda, J., Ford-Gilboe, M., & Varcoe, C. (2010). Cultural adaptation and translation of measures: An integrated method. Research in Nursing & Health,33(2), 133–143. https://doi.org/10.1002/nur.20364.CrossRef

Terwee, C. B., Bot, S. D. M., De Boer, M. R., Van Der Windt, A. W. M., Knol, D. L., & Dekker, J. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology,60, 34–42. https://doi.org/10.1016/j.jclinepi.2006.03.012.CrossRefPubMed

VanderWeele, T. J., Balboni, T. A., & Koh, H. K. (2017). Health and spirituality. JAMA - Journal of the American Medical Association,318(6), 519–520. https://doi.org/10.1001/jama.2017.8136.CrossRefPubMed

Wartberg, L., Kriston, L., Kegel, K., & Thomasius, R. (2016). Adaptation and psychometric evaluation of the young diagnostic questionnaire (YDQ) for parental assessment of adolescent problematic internet use. Journal of Behavioral Addictions,5(2), 311–317. https://doi.org/10.1556/2006.5.2016.049.CrossRefPubMedPubMedCentral

Whitford, H. S., & Olver, I. N. (2012). The multidimensionality of spiritual wellbeing: Peace, meaning, and faith and their association with quality of life and coping in oncology. Psycho-Oncology,21(6), 602–610. https://doi.org/10.1002/pon.1937.CrossRefPubMed

Wiklander, M., Rydstrom, L.-L., Ygge, B.-M., Naver, L., Wettergren, L., & Eriksson, L. E. (2013). Psychometric properties of a short version of the HIV stigma scale, adapted for children with HIV infection. Health and Quality of Life Outcomes,11(1), 195. https://doi.org/10.1186/1477-7525-11-195.CrossRefPubMedPubMedCentral

Zeighamy, H., & Sadeghi, N. (2016). Spiritual/religious needs of adolescents with cancer. Religions,7(7), 91. https://doi.org/10.3390/rel7070091.CrossRef

Title: Measuring Spiritual Well-Being in Brazilian Adolescents with Chronic Illness Using the FACIT-Sp-12: Age Adaptation of the Self-Report Version, Development of the Parental-Report Version, and Validation
Authors: Willyane Andrade de Alvarenga
Lucila Castanheira Nascimento
Claudia Benedita dos Santos
Ana Carolina Andrade Biaggi Leite
Holger Mühlan
Silke Schmidt
Monika Bullinger
Emília Campos de Carvalho
Jason Bredle
Benjamin Arnold
Robson de Castro Coelho
Margarida Vieira
Publication date: 01-12-2019
Publisher: Springer US
Published in: Journal of Religion and Health / Issue 6/2019
Print ISSN: 0022-4197
Electronic ISSN: 1573-6571
DOI: https://doi.org/10.1007/s10943-019-00901-y

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Measuring Spiritual Well-Being in Brazilian Adolescents with Chronic Illness Using the FACIT-Sp-12: Age Adaptation of the Self-Report Version, Development of the Parental-Report Version, and Validation

Abstract

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 6/2019

Feasibility and Acceptability of a Telephone-Based Chaplaincy Intervention to Decrease Parental Spiritual Struggle

Separating the “Limbs” of Yoga: Limited Effects on Stress and Mood

Correction to: The Altered States of Consciousness in Transpersonal Approach Psychotherapy: Systematic Review and Guidelines for Research and Clinical Practice

The Spirituality in End-of-Life Cancer Patients, in Relation to Anxiety, Depression, Coping Strategies and the Daily Spiritual Experiences: A Cross-Sectional Study

Staff Perceptions of Chaplains in a Neurosciences Critical Care Unit

Smoking and Religion: Untangling Associations Using English Survey Data