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Sources of meaning in family caregivers of terminally ill patients supported by a palliative nursing care team: A naturalistic three-month cohort study

Published online by Cambridge University Press:  02 May 2017

Juan Valdés-Stauber ,
Rafael Lemaczyk  and
Reinhold Kilian
Juan Valdés-Stauber*
Affiliation:
Zentrum für Psychiatrie Südwürttemberg, Department of Psychiatry and Psychotherapy I, University of Ulm, Germany
Rafael Lemaczyk
Affiliation:
General Practitioner, Bad Waldsee and Bad Wurzach, Germany
Reinhold Kilian
Affiliation:
Bezirkskrankenhaus Günzburg, Department of Psychiatry and Psychotherapy II, University of Ulm, Germany
*
Address correspondence and reprint requests to: Juan Valdés-Stauber, Zentrum für Psychiatrie Südwürttemberg, Weingartshofer Straße 2, 88214 Ravensburg, Germany. E-Mail: [email protected].
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Abstract

Objective:

Our aim was to identify possible patterns of change or durability in sources of meaning for family caregivers of terminally ill patients after the onset of support at home by an outreach palliative nursing team during a three-month survey period.

Method:

The Sources of Meaning and Meaning in Life Questionnaire (SoMe) was administered to 100 caregivers of terminally ill patients at four measurement timepoints: immediately before the onset of the palliative care (t0), and at 1 week, 1 month, and 3 months after t0. Time-dependent changes were assessed for the completed subsample (n = 24) by means of bivariate linear as well as quadratic regression models. Multivariate regressions with dimensions of meaning in life as dependent variables were performed for the whole sample by means of random-effects models: dependent variables changed over time (four timepoints), whereas regressors remained constant.

Results:

No significant differences were found for psychosocial and clinical variables or for sources of meaning between the uncompleted and completed subsamples. Growth curve analyses revealed no statistically significant but tendentiously parabolic changes for any dimensions or for single sources of meaning. In multivariate models, a negative association was found between patient age, psychological burden of family caregivers, and changes in total SoMe score, as well as for the superordinate dimensions.

Significance of Results:

According to our hypothesis, sources of meaning and meaning in life seem to remain robust in relatives caring for terminally ill family members during the three-month survey period. A parabolic development pattern of single sources of meaning indicates an adjustment process. An important limitation of our study is the small number of participants compared with larger multivariate models because of high dropout rates, primarily due to the death of three-quarters of the participants during the survey period.

Keywords

Palliative careFamily caregiversPalliative nursing teamsSources of meaningPsychological burden
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 3 , June 2018 , pp. 246 - 259
Copyright
Copyright © Cambridge University Press 2017 

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References

REFERENCES

American National Consensus Project for Quality Palliative Care (2009). Clinical Practice Guidelines for Quality Palliative Care, 2nd ed. Pittsburgh: American National Consensus Project for Quality Palliative Care. Available from http://www.nationalconsensusproject.org/Guideline.pdf.Google Scholar
Antonovsky, A. (1993). Complexity, conflict, chaos, coherence, coercion and civility. Social Science & Medicine, 37(8), 969–974.Google Scholar
Applebaum, A.J., Farran, C.J., Marziliano, A.M., et al. (2014). Preliminary study of themes of meaning and psychosocial service use among informal cancer caregivers. Palliative & Supportive Care, 12(2), 139–48. Epub ahead of print Aug 7, 2013. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5084449/.Google Scholar
Applebaum, A.J., Kulikowski, J.R. & Breitbart, W. (2015). Meaning-centered psychotherapy for cancer caregivers (MCP–C): Rationale and overview. Palliative & Supportive Care, 13(6), 1631–1641. Epub ahead of print May 22. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5084443/.Google Scholar
Battista, J. & Almond, R. (1973). The development of meaning in life. Psychiatry, 36(4), 409–427.Google Scholar
Beck, A.T. & Steer, R.A. (1988). Manual for the Beck Hopelessness Scale. San Antonio, TX: Psychological Corporation.Google Scholar
Brandstätter, M., Kögler, M., Baumann, U., et al. (2014). Experience of meaning in life in bereaved informal caregivers of palliative care patients. Supportive Care in Cancer, 22(5), 1391–1399. Epub ahead of print Jan 3.Google Scholar
Breitbart, W. (2002). Spirituality and meaning in supportive care: Spirituality- and meaning-centered group psychotherapy interventions in advanced cancer. Supportive Care in Cancer, 10(4), 272–280. Epub ahead of print Aug 28, 2001.Google Scholar
Breitbart, W., Rosenfeld, B., Gibson, C., et al. (2010). Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psycho-Oncology, 19(1), 21–28. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3648880/.CrossRefGoogle Scholar
Breitbart, W., Rosenfeld, B., Pessin, H., et al. (2015). Meaning-centered group psychotherapy: An effective intervention for improving psychological well-being in patients with advanced cancer. Journal of Clinical Oncology, 33(7), 749–754. Epub ahead of print Feb 2. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4334778/.Google Scholar
Chochinov, H.M. (2002). Dignity-conserving care: A new model for palliative care. The Journal of the American Medical Association, 287(17), 2253–2260. Available from http://www.med.uottawa.ca/courses/totalpain/pdf/doc-28.pdf.Google Scholar
Chochinov, H.M., Hassard, T., McClement, S., et al. (2008). The Patient Dignity Inventory: A novel way of measuring dignity-related distress in palliative care. Journal of Pain and Symptom and Management, 36(6), 559–570. Available from https://www.researchgate.net/publication/5275584_The_Patient_Dignity_Inventory_A_Novel_Way_of_Measuring_Dignity-Related_Distress_in_Palliative_Care.Google Scholar
Chochinov, H.M., Kristjanson, L.J., Breitbart, W., et al. (2011). Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: A randomized controlled trial. The Lancet. Oncology, 12(8), 753–762. Epub ahead of print Jul 6. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3185066/.Google Scholar
Choi, Y.S., Hwang, S.W., Hwang, I.C., et al. (2016). Factors associated with quality of life among family caregivers of terminally ill cancer patients. Psycho-Oncology, 25(2), 217–224. Epub ahead of print Jul 7, 2015.Google Scholar
Crumbaugh, J.D. (1977). The Seeking of Noetic Goals (SONG) test: A complementary scale to the Purpose in Life Test (PIL). Journal of Clinical Psychology, 33(3), 900–907.Google Scholar
Eastern Cooperative Oncology Group (2016). ECOG Performance Status. Boston: Eastern Cooperative Oncology Group. Available from http://ecog-acrin.org/resources/ecog-performance-status.Google Scholar
Ebersole, P. & Sacco, J. (1983). Depth of meaning in life: A preliminary study. Psychological Reports, 53, 890–890.Google Scholar
Faschingbauer, T.R. (1981). Texas Revised Inventory of Grief Manual. Houston: Honeycomb Publishing.Google Scholar
Fegg, M.J., Kramer, M., L'Hoste, S., et al. (2008). The Schedule for Meaning in Life Evaluation (SMiLE). Validation of a new instrument for meaning-in-life research. Journal of Pain and Symptom Management, 35(4), 356–364. Available from http://www.jpsmjournal.com/article/S0885-3924(07)00735-X/pdf.Google Scholar
Frankl, V. (1985). Man's Search for Meaning: An Introduction to Logotherapy, 74th ed. New York: Simon & Schuster.Google Scholar
Frankl, V. (1994). Ärztliche Seelsorge: Grundlagen der Logotherapie und Existenzanalyse [in German]. Frankfurt am Main: Fischer.Google Scholar
Freitas, T.H., Andreoulakis, E., Alves, G.S., et al. (2015). Associations of sense of coherence with psychological distress and quality of life in inflammatory bowel disease. World Journal of Gastroenterology, 21(21), 6713–6727. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4458782/.Google Scholar
Götze, H., Brähler, E., Gansera, L., et al. (2014). Psychological distress and quality of life of palliative cancer patients and their caring relatives during home care. Supportive Care in Cancer, 22(10), 2775–2782. Epub ahead of print May 9.Google Scholar
Govina, O., Kotronoulas, G., Mystakidou, K., et al. (2015). Effects of patient and personal demographic, clinical and psychosocial characteristics on the burden of family members caring for patients with advanced cancer in Greece. European Journal of Oncology Nursing, 19(1), 81–88. Epub ahead of print Oct 28, 2014.Google Scholar
Grande, G.E., Austin, L., Ewing, G., et al. (2015). Assessing the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: A stepped wedge cluster trial. BMJ Supportive & Palliative Care, pii: bmjspcare-2014-000829. Epub ahead of print Dec 30. Available from http://spcare.bmj.com/content/early/2015/12/30/bmjspcare-2014-000829.Google Scholar
Greenstein, M. & Breitbart, W. (2000). Cancer and the experience of meaning: A group psychotherapy program for people with cancer. American Journal of Psychotherapy, 54(4), 486–500.Google Scholar
Grumbaugh, J.C. & Maholic, L.T. (1964). The Purpose in Life Test. Huntsville, AL: Psychometric Affiliates.Google Scholar
Herschbach, P., Book, K., Brandl, T., et al. (2008). Psychological distress in cancer patients assessed with an expert rating scale. British Journal of Cancer, 99(1), 37–43. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2453012/.Google Scholar
Herth, K. (1992). Abbreviated instrument to measure hope: Development and psychometric evaluation. Journal of Advanced Nursing, 17(10), 1251–1259.Google Scholar
Hou, R.J., Wong, S.Y., Yip, B.H., et al. (2014). The effects of mindfulness-based stress reduction program on the mental health of family caregivers: A randomized controlled trial. Psychotherapy and Psychosomatics, 83(1), 45–53.Google Scholar
Kaasa, S. & Loge, J.H. (2003). Quality of life in palliative care: Principles and practice. Palliative Medicine, 17(1), 11–20.Google Scholar
Kent, E.K., Rowland, J.H., Northhouse, L., et al. (2016). Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer, 122(13), 1987–1995. Epub ahead of print Mar 17.CrossRefGoogle ScholarPubMed
Kögler, M., Brandstätter, M., Borasio, G.D., et al. (2015). Mindfulness in informal caregivers of palliative patients. Palliative & Supportive Care, 13(1), 11–18. Epub ahead of print Jun 17, 2013.Google Scholar
Längle, A., Orgler, C. & Kundi, M. (2000). Existenzskala ESK [in German]. Göttingen: BeltzTest/Hogrefe.Google Scholar
Lazarus, R.S. & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer Science.Google Scholar
Lohne, V., Miaskowski, C. & Rustøen, T. (2012). The relationship between hope and caregiver strain in family caregivers of patients with advanced cancer. Cancer Nursing, 35(2), 99–105.Google Scholar
Marten-Mittag, B., Book, K., Buchhold, B., et al. (2015). The Basic Documentation for Psycho-Oncology, short form (PO–Bado SF): An expert rating scale for distress screening: Development and psychometric properties. Psycho-Oncology, 24(6), 653–660.Google Scholar
Mazzotti, E., Sebastiani, C., Antonini Cappellini, G.C., et al. (2013). Predictors of mood disorders in cancer patients' caregivers. Supportive Care in Cancer, 21(2), 643–647. Epub ahead of print Dec 1, 2012.Google Scholar
McMillan, S.C., Small, B.J., Weitzner, M., et al. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer: A randomized clinical trial. Cancer, 106(1), 214–222. Available from http://onlinelibrary.wiley.com/doi/10.1002/cncr.21567/full.CrossRefGoogle ScholarPubMed
Merckaert, I., Libert, Y., Lieutnant, F., et al. (2013). Desire for formal psychological support among caregivers of patients with cancer: Prevalence and implications for screening their needs. Psycho-Oncology, 22(6), 1389–1395.Google Scholar
Nipp, R.D., El-Jawahri, A., Fishbein, J.N., et al. (2016). The relationship between coping strategies, quality of life, and mood in patients with incurable cancer. Cancer, 122(13), 2110–2116. Epub ahead of print Apr 18.CrossRefGoogle ScholarPubMed
O'Boyle, C.A., McGee, H.M., Hickey, A., et al. (1992). The Schedule for the Evaluation of Individual Quality of Life (SEIQoL): Administration Manual. Dublin: Royal College of Surgeons in Ireland. Available from http://epubs.rcsi.ie/cgi/viewcontent.cgi?article=1042&context=psycholrep.Google Scholar
Oechsle, K., Goerth, K., Bokemeyer, C., et al. (2013). Anxiety and depression in caregivers of terminally ill cancer patients: Impact on their perspective of the patient's symptom burden. Journal of Palliative Medicine, 16(9), 1095–1101. Epub ahead of print Aug 3.Google Scholar
O'Hara, R., Hull, J.G., Lyons, K.D., et al. (2010). Impact of caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliative & Supportive Care, 8(4), 395–404. Epub ahead of print Sep 28. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063059/.Google Scholar
Padmaja, G., Vanlalhruaii, C., Rana, S., et al. (2016). Care givers' depression, anxiety, distress, and somatisation as predictors of identical symptoms in cancer patients. Journal of Cancer Research and Therapeutics, 12(1), 53–57. Available from http://www.cancerjournal.net/article.asp?issn=0973-1482;year=2016;volume=12;issue=1;spage=53;epage=57;aulast=Padmaja.Google Scholar
Pérez-Ordóñez, F., Frias-Osuna, A., Romero-Rodríguez, Y., et al. (2016). Coping strategies and anxiety in caregivers of palliative cancer patients. European Journal of Cancer Care, 25(4), 600–607. Epub ahead of print Apr 21.Google Scholar
Peterman, A.H., Fitchett, G., Brady, M.J., et al. (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.Google Scholar
Popek, V. & Hönig, K. (2015). Cancer and family: Tasks and stress of relatives [in German]. Der Nervenarzt, 86(3), 268–270.Google ScholarPubMed
Reed, P.G. (1986). Developmental resources and depression in the elderly. Nursing Research, 35(6), 368–374Google Scholar
Reker, G.T. (1992). The Life Attitude Profile–Revised (LAP–R). Peterborough, ON: Student Psychologists Press.Google Scholar
Reker, G.T. (1996). Manual: Sources of Meaning Profile–Revised. Peterborough, England: Student Psychologist Press.Google Scholar
Reker, G.T. (2000). Theoretical perspective, dimensions, and measurement of existential meaning. In Exploring Existential Meaning: Optimizing Human Development Across the Life Span. Reker, G.T. & Chamberlain, K. (eds.), pp. 39–55. Thousand Oaks, CA: Sage Publications.Google Scholar
Salmon, P., Manzi, F. & Valori, R.M. (1996). Measuring the meaning of life for patients with incurable cancer: The Life Evaluation Questionnaire (LEQ). European Journal of Cancer, 32 A(5), 755–760.CrossRefGoogle Scholar
Scheffold, K., Mehnert, A., Müller, V., et al. (2014). Sources of meaning in cancer patients: Influences of global meaning, anxiety and depression in a longitudinal study. European Journal of Cancer Care, 23(4), 472–480. Epub ahead of print Nov 25, 2013.Google Scholar
Schnell, T. (2009). The Sources of Meaning in Life Questionnaire (SoMe): Relations to demographics and well-being. The Journal of Positive Psychology, 4(10), 483–499.Google Scholar
Schnell, T. & Becker, P. (2007). Der Fragebogen zu Lebensbedeutungen und Lebenssinn (LeBe) [The Sources of Meaning and Meaning in Life Questionnaire (SoMe)] [in German]. Göttingen: Hogrefe Publishing.Google Scholar
Skleranova, H., Krümpelmann, A., Haun, M.W., et al. (2015). When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer, 121(9), 1513–1519. Epub ahead of print Feb 11.Google Scholar
Tang, S.T., Cheng, C.C., Lee, K.C., et al. (2013). Mediating effects of sense of coherence on family caregivers' depressive distress while caring for terminally ill cancer patients. Cancer Nursing, 36(6), E25–E33.Google Scholar
Thurn, T., Brandstätter, M., Fensterer, V., et al. (2015). Existential behavioral therapy for informal caregivers of palliative patients: Barriers and promoters of support utilization. Palliative & Supportive Care, 13(3), 757–766. Epub ahead of print Jun 6, 2014.Google Scholar
Ugalde, A., Krishnasamy, M. & Schofield, P. (2014). The relationship between self-efficacy and anxiety and general distress in caregivers of people with advanced cancer. Journal of Palliative Medicine, 17(8), 939–941. Epub ahead of print Jun 2.CrossRefGoogle ScholarPubMed
Valdés-Stauber, J. (2016). Man at the frontier of his being: Scope of the concept of “limit situation” in psychiatry and psychotherapy following Jaspers' existential ontology [in German]. Fortschritte der Neurologie-Psychiatrie, 84(1), 19–27. Epub ahead of print Feb 15.Google Scholar
Victoria Hospice Society (2006). Palliative Performance Scale (PPSv2): Medical Care of the Dying, 4th ed. Victoria, BC: Victoria Hospice Society. Available from http://palliative.info/resource_material/PPSv2.pdf.Google Scholar
Warner, S.C. & Williams, J.I. (1987). The Meaning in Life Scale: Determining the reliability and validity of a measure. Journal of Chronic Disease, 40(6), 503–512.Google Scholar
Wong, P.T.P. (1998). Meaning-centered counseling. In The Human Quest for Meaning: A Handbook of Psychological Research and Clinical Applications. Wong, P.T.P. & Fry, P.S. (eds.), pp. 395–435. Mahwah, NJ: Lawrence Erlbaum Associates.Google Scholar
Wong, P.T.P., Reker, G.T. & Gesser, G. (1994). Death Attitude Profile–Revised: A multidimensional measure of attitudes toward death. In Death Anxiety Handbook: Research, Instrumentation, and Application. Neimeyer, R.A. (ed.), pp. 121–148. Washington, DC: Taylor & Francis.Google Scholar