Hostname: page-component-848d4c4894-2pzkn Total loading time: 0 Render date: 2024-06-02T04:13:37.572Z Has data issue: false hasContentIssue false
  • English
  • Français

The effect of social support on the emotional well-being of people with amyotrophic lateral sclerosis: Exploring the mediating role of spirituality

Published online by Cambridge University Press:  15 May 2024

Anne Fernandez Open the ORCID record for Anne Fernandez [Opens in a new window] ,
Léo Guenegou ,
Philippe Corcia  and
Nathalie Bailly
Anne Fernandez*
Affiliation:
Centre de Coordination des Centres de Référence Maladies Rares (CRMR) SLA, CHRU de Tours, France
Léo Guenegou
Affiliation:
Laboratoire EA 2114 PAVeA (Psychologie des Ages de la Vie et Adaptation), Département de Psychologie, Université de Tours, France
Philippe Corcia
Affiliation:
Centre de Coordination des Centres de Référence Maladies Rares (CRMR) SLA, CHRU de Tours, INSERM U1253, France
Nathalie Bailly
Affiliation:
Laboratoire EA 2114 PAVeA (Psychologie des Ages de la Vie et Adaptation), Département de Psychologie, Université de Tours, France
*
Corresponding author: Anne Fernandez; Email: a.fernandez@chu-tours.fr
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that, so far, is considered always fatal. Treatments mainly consist in increasing survival and aim to improve the quality of life of people with ALS (pwALS). Social support and spirituality have been shown to play a key role in pwALS’ quality of life. Our study explored it in depth by investigating the underlying mechanisms linking social support, spirituality, and emotional well-being.

Methods

Thirty-six pwALS underwent a battery of tests evaluating emotional well-being (emotional well-being scale of the 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire), social support (6-item Social Support Questionnaire), and spiritual well-being (12-item Functional Assessment of Chronic Illness Therapy – Spiritual well-being). Our recruitment was web-based through the FILSLAN and the ARSLA websites as well as through Facebook® advertisements (ALS groups). Data were analyzed by Pearson correlation analysis and Process macro was used in an SPSS program to analyze the mediator variable effect.

Results

Availability of social support, spiritual well-being, and 2 of its dimensions, i.e., meaning and peace, were positively correlated with emotional well-being. The mediational analyses showed that spiritual well-being, meaning, and peace act as mediators in the association between availability of social support and good emotional well-being.

Significance of results

Availability of social support and spirituality are essential for the emotional well-being of pwALS. Spirituality as a mediator between availability of social support and emotional well-being appears as real novel finding which could be explored further. Spiritual well-being, meaning, and peace appear as coping resources for pwALS. We provide practical guidance for professionals working with pwALS.

Keywords

Amyotrophic lateral sclerosis (ALS)mediating role of spiritualityavailability of social supportemotional well-beingpsychological research
Type
Original Article
Information
Palliative & Supportive Care , First View , pp. 1 - 8
Check for updates
Copyright
© The Author(s), 2024. Published by Cambridge University Press.

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abu, HO, Ulbricht, C, Ding, E, et al. (2018) Association of religiosity and spirituality with quality of life in patients with cardiovascular disease: A systematic review. Quality of Life Research 27(11), 2777–2797. doi:10.1007/s11136-018-1906-4CrossRefGoogle ScholarPubMed
Agli, O, Bailly, N and Ferrand, C (2017) Validation of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp12) on French old people. Journal of Religion and Health 56(2), 64–76. doi:10.1007/s10943-016-0220-0CrossRefGoogle ScholarPubMed
Bai, M and Lazenby, M (2015) A systematic review of associations between spiritual well-being and quality of life at the scale and factor levels in studies among patients with cancer. Journal of Palliative Medicine 18(3), 286–298. doi:10.1089/jpm.2014.0189CrossRefGoogle ScholarPubMed
Balboni, TA, Vanderwerker, LC, Block, SD, et al. (2007) Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. Journal of Clinical Oncology 25(5), 555–560. doi:10.1200/JCO.2006.07.9046CrossRefGoogle ScholarPubMed
Bovero, A, Leombruni, P, Miniotti, M, et al. (2016) Spirituality, quality of life, psychological adjustment in terminal cancer patients in hospice. European Journal of Cancer Care (Engl) 25(6), 961–969. doi:10.1111/ecc.12360CrossRefGoogle ScholarPubMed
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. doi:10.1007/s005200100289CrossRefGoogle ScholarPubMed
Breitbart, W, Rosenfeld, B, Gibson, C, et al. (2010) Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psychooncology 19(1), 21–28. doi:10.1002/pon.1556CrossRefGoogle Scholar
Bruchon-Schweitzer, M, Rascle, N, Cousson-Gélie, F, et al. (2003) Le questionnaire de soutien social de Sarason (SSQ6): Une adaptation française. Psychologie Française 48, 41–53.Google Scholar
Bryson, BA and Bogart, KR (2020) Social support, stress, and life satisfaction among adults with rare diseases. Health Psychology 39(10), 912–920. doi:10.1037/hea0000905CrossRefGoogle ScholarPubMed
Büssing, A (2010) Spirituality as a resource to rely on in chronic illness: The SpREUK questionnaire. Religion 1, 9–17. doi:10.3390/rel1010009CrossRefGoogle Scholar
Canada, AL, Murphy, PE, Fitchett, G, et al. (2008) A 3-factor model for the FACIT-Sp. Psychooncology 17(9), 908–916. doi:10.1002/pon.1307CrossRefGoogle ScholarPubMed
Captari, LE, Cowden, RG, Sandage, SJ, et al. (2022) Religious/spiritual struggles and depression during COVID-19 pandemic lockdowns in the global south: Evidence of moderation by positive religious coping and hope. Psychology of Religion and Spirituality 14(3), 325–337. doi:10.1037/rel0000474CrossRefGoogle Scholar
Chiò, A, Hammond, ER, Mora, G, et al. (2015) Development and evaluation of a clinical staging system for amyotrophic lateral sclerosis. Journal of Neurology, Neurosurgery & Psychiatry 86(1), 38–44. doi:10.1136/jnnp-2013-306589CrossRefGoogle ScholarPubMed
Ciria-Suarez, L, Calderon, C, Fernández Montes, A, et al. (2021) Optimism and social support as contributing factors to spirituality in cancer patients. Supportive Care in Cancer 29(6), 3367–3373. doi:10.1007/s00520-020-05954-4CrossRefGoogle ScholarPubMed
Couratier, P, Corcia, P, Lautrette, G, et al. (2016) Epidemiology of amyotrophic lateral sclerosis: A review of literature. Revue Neurologique 172(1), 37–45. doi:10.1016/j.neurol.2015.11.002CrossRefGoogle ScholarPubMed
Cuniah, M, Bréchon, G and Bailly, N (2023) Spiritualité et accompagnement dans le cadre de la maladie incurable: Points de vue et attentes des patients. Psychooncologie 17(2), 71–78. doi:10.3166/pson-2022-0232Google Scholar
Delgado-Guay, MO (2014) Spirituality and religiosity in supportive and palliative care. Current Opinion in Supportive Palliative Care 8(3), 308–313. doi:10.1097/SPC.0000000000000079CrossRefGoogle ScholarPubMed
Fisher, PL, Dodd, R, Barrow, E, et al. (2019) Predictors of distress in amyotrophic lateral sclerosis: A systematic review. Cogent Psychology 6(1), 1–15. doi:10.1080/23311908.2019.1608031CrossRefGoogle Scholar
Folkman, S (1997) Positive psychological states and coping with severe stress. Social Science & Medicine 45(8), 1207–1221. doi:10.1016/s0277-9536(97)00040-3CrossRefGoogle ScholarPubMed
Goldstein, LH, Atkins, L, Landau, S, et al. (2006) Longitudinal predictors of psychological distress and self-esteem in people with ALS. Neurology 67(9), 1652–1658. doi:10.1212/01.wnl.0000242886.91786.47CrossRefGoogle ScholarPubMed
Gonçalves, F, Teixeira, MI and Magalhães, B (2022) The role of spirituality in people with amyotrophic lateral sclerosis and their caregivers: Scoping review. Palliative and Supportive Care 5, 1–11. doi:10.1017/S1478951522001511Google Scholar
Hardiman, O, Al-Chalabi, A, Chio, A, et al. (2017) Amyotrophic lateral sclerosis. Nature Reviews Disease Primers 5(3), . doi:10.1038/nrdp.2017.71Google Scholar
Harper, FWK, Peterson, AM, Albrecht, TL, et al. (2016) Satisfaction with support versus size of network: Differential effects of social support on psychological distress in parents of pediatric cancer patients. Psychooncology 25, 551–558. doi:10.1002/pon.3863CrossRefGoogle ScholarPubMed
Hartzfeld, DEH, Siddique, N, Victorson, D, et al. (2015) Reproductive decision-making among individuals at risk for familial amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 16(1-2), 114–119. doi:10.3109/21678421.2014.951945CrossRefGoogle ScholarPubMed
Hayes, AF (2018) Introduction to Mediation, Moderation, and Conditional Process Analysis: A Regression-based Approach, 2nd edn. New York (NY): The Guilford Press.Google Scholar
Hogg, KE, Goldstein, LH and Leigh, PN (1994) The psychological impact of motor neurone disease. Psychological Medicine 24(3), 625–632. doi:10.1017/s003329170002777xCrossRefGoogle ScholarPubMed
Jenkinson, C, Fitzpatrick, R, Brennan, C, et al. (1999) Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neurone disease: The ALSAQ-40. Journal of Neurology 246(Suppl 3:III), 16–21. doi:10.1007/BF03161085CrossRefGoogle Scholar
Jenks Kettmann, JD and Altmaier, EM (2008) Social support and depression among bone marrow transplant patients. Journal of Health Psychology 13(1), 39–46. doi:10.1177/1359105307084310CrossRefGoogle ScholarPubMed
Kamijo, Y and Miyamura, T (2020) Spirituality and associated factors among cancer patients undergoing chemotherapy. Japan Journal of Nursing Sciences 17(1), . doi:10.1111/jjns.12276Google ScholarPubMed
Kazak, AE, Barakat, LP, Meeske, K, et al. (1997) Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers. Journal of Consulting and Clinical Psychology 65(1), 120–129. doi:10.1037//0022-006x.65.1.120CrossRefGoogle ScholarPubMed
Langford, CP, Bowsher, J, Maloney, JP, et al. (1997) Social support: A conceptual analysis. Journal of Advanced Nursing 25(1), 95–100. doi:10.1046/j.1365-2648.1997.1997025095.xCrossRefGoogle ScholarPubMed
Lazenby, M, Khatib, J, Al-Khair, F, et al. (2013) Psychometric properties of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp) in an Arabic-speaking, predominantly Muslim population. Psychooncology 22(1), 220–227. doi:10.1002/pon.2062CrossRefGoogle Scholar
Lepore, SJ and Kernan, WD (2009) Positive life change and the social context of illness: An expanded social-cognitive processing model. In Park, CL, Lechner, SC, Antoni, MH and Stanton, AL (eds), Medical Illness and Positive Life Change: Can Crisis Lead to Personal Transformation? Washington, DC: American Psychological Association, 139–152.CrossRefGoogle Scholar
McEwen, BS (1998) Protective and damaging effects of stress mediators. The New England Journal of Medicine 338(3), 171–179. doi:10.1056/NEJM199801153380307CrossRefGoogle ScholarPubMed
McLeod, JE and Clarke, DM (2007) A review of psychosocial aspects of motor neurone disease. Journal of the Neurological Sciences 258(1–2), 4–10. doi:10.1016/j.jns.2007.03.001CrossRefGoogle ScholarPubMed
Novalany, J (2017) The role of hope and optimism in breast cancer patients: A systematic review. Master of Social Work Clinical Research Papers, Sophia The St. Catherine University. https://sophia.stkate.edu/msw_papers/779 (accessed 13 February 2024).Google Scholar
O’Brien, MR and Clark, D (2015) Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease? Palliative and Supportive Care 13(6), 1603–1614. doi:10.1017/S1478951515000097CrossRefGoogle ScholarPubMed
Pagnini, F, Lunetta, C, Rossi, G, et al. (2011) Existential well-being and spirituality of individuals with amyotrophic lateral sclerosis is related to psychological well-being of their caregivers. Amyotrophic Lateral Sclerosis 12(2), 105–108. doi:10.3109/17482968.2010.502941CrossRefGoogle ScholarPubMed
Park, CL and Folkman, S (1997) Meaning in the context of stress and coping. Review of General Psychology 1(2), 115–144. doi:10.1037/1089-2680.1.2.115CrossRefGoogle Scholar
Pereira, MG, Faria, S and Lopes, H (2019) Quality of life one year after bariatric surgery: The moderator role of spirituality. Obesity Surgery 29(4), 1207–1215. doi:10.1007/s11695-018-03669-4CrossRefGoogle ScholarPubMed
Prati, G and Pietrantoni, L (2009) Optimism, social support, and coping strategies as factors contributing to posttraumatic growth: A meta-analysis. Journal of Loss and Trauma 14, 364–388. doi:10.1080/15325020902724271CrossRefGoogle Scholar
Puchalski, C, Ferrell, B, Virani, R, et al. (2009) Improving the quality of spiritual care as a dimension of palliative care: The report of the Consensus Conference. Journal of Palliative Medicine 12(10), 885–904. doi:10.1089/jpm.2009.0142CrossRefGoogle Scholar
Reutter, KK and Bigatti, SM (2014) Religiosity and spirituality as resiliency resources: Moderation, mediation, or moderated mediation? Journal for the Scientific Study of Religion 53(1), 56–72. doi:10.1111/jssr.12081CrossRefGoogle Scholar
Rosa Silva, JP, Santiago Júnior, JB, Dos Santos, EL, et al. (2020) Quality of life and functional independence in amyotrophic lateral sclerosis: A systematic review. Neuroscience and Biobehavioral Reviews 111, 1–11. doi:10.1016/j.neubiorev.2019.12.032CrossRefGoogle ScholarPubMed
Sarason, IG, Levine, HM, Basham, RB, et al. (1983) Assessing social support: The Social Support Questionnaire. Journal of Personality and Social Psychology 44(1), 127–139. doi:10.1037/0022-3514.44.1.127CrossRefGoogle Scholar
Sarason, BR, Shearin, EN, Pierce, GR, et al. (1987) Interrelations of social support measures: Theoretical and practical implications. Journal of Personality and Social Psychology 52, 813–832. doi:10.1037/0022-3514.52.4.813CrossRefGoogle Scholar
Schaefer, JA and Moos, RH (1998) The context for posttraumatic growth: Life crises, individual and social resources, and coping. In Tedeschi, RG, Park, CL and Calhoun, LG (eds), Posttraumatic Growth: Positive Changes in the Aftermath of Crisis. Mahwah, NJ: Lawrence Erlbaum Associates Publishers, 99–125.Google Scholar
Shaheen, N, Andleeb, S and Naz, F (2015) Perceived satisfaction with social support and cancer specific psychological stress in newly diagnoses breast cancer women. Pakistan Journal of Social and Clinical Psychology 13(2), 72–79.Google Scholar
Stoltzfus, MJ and Green, R (2013) Spirituality, chronic illness, and healing: Unique challenges and opportunities. In Stoltzfus, MJ, Green, R and Schumm, D (eds), Chronic Illness, Spirituality, and Healing. New York: Palgrave Macmillan, 15–45.CrossRefGoogle Scholar
Taylor, SE (2011) Social support: A review. In Friedman, HS (ed), The Handbook of Health Psychology. New York, NY: Oxford University Press, 189–214.Google Scholar
Uchino, BN (2009) What a lifespan approach might tell us about why distinct measures of social support have differential links to physical health. Journal of Social & Personal Relationships 26(1), 53–62. doi:10.1177/0265407509105521CrossRefGoogle ScholarPubMed
Van den Berg, JP, Kalmijn, S, Lindeman, E, et al. (2005) Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 65(8), 1264–1267. doi:10.1212/01.wnl.0000180717.29273.12CrossRefGoogle ScholarPubMed
Vrabec, NJ (1997) Literature review of social support and caregiver burden, 1980 to 1995. Image: The Journal of Nursing Scholarship 29(4), 383–388. doi:10.1111/j.1547-5069.1997.tb01062.xGoogle ScholarPubMed
Whitford, HS and Olver, IN (2012) The multidimensionality of spiritual wellbeing: Peace, meaning, and faith and their association with quality of life and coping in oncology. Psychooncology 21(6), 602–610. doi:10.1002/pon.1937CrossRefGoogle ScholarPubMed
Yilmaz, M and Cengiz, HÖ (2019) The relationship between spiritual well-being and quality of life in cancer survivors. Palliative and Supportive Care 18(1), 55–62. doi:10.1017/S1478951519000464CrossRefGoogle Scholar
Zhang, H, Zhao, Q, Cao, P, et al. (2017) Resilience and quality of life: Exploring the mediator role of social support in patients with breast cancer. Medical Science Monitor 23, 5969–5979. doi:10.12659/msm.907730CrossRefGoogle ScholarPubMed
Zhong, QY, Gelaye, B, VanderWeele, TJ, et al. (2018) Causal model of the association of social support with antepartum depression: A marginal structural modeling approach. American Journal of Epidemiology 187(9), 1871–1879. doi:10.1093/aje/kwy067CrossRefGoogle ScholarPubMed