Living with a chronic disease: the role of maternal mediation in the meaning-making process of their children’s Type 1 Diabetes.

Marta Barone, Livia Savarese, Maria Francesca Freda

Abstract


In this article we present a qualitatively-driven study aimed at exploring the meaning-making processes related to the maternal elaboration of their child’s diagnosis of chronic illness. In particular, we tried to examine a specific function of this process in mediating between the mothers’ own emotional experiences and the management of their children’s illness on a daily basis. We analyzed the narratives of 21 mothers of young patients with type one diabetes mellitus (T1D), aged between 6 and 17 years, collected through the “Sense of Grip Interview”. The whole narrative corpus was analyzed using the method developed by Auerbach and Silverstein, called Hypothesis-generating research. We identified four macro-processes in which the mediation function of the maternal meaning-making process is articulated: emotional regulation, collaboration in the therapeutic management, presentation of the disease and social sharing of the disease. The mediation function can act on two different levels: an intra-personal level, by fostering maternal elaboration of the disease; and an inter-personal level, by promoting the child’s meaning making process and the actions to manage their disease, in accordance with the developmental competencies acquired by their children.

Keywords


Chronic disease; Children; Narrative analysis; Type 1 Diabetes; Mothers.

Full Text:

PDF

References


Auerbach, C., & Silverstein, L. B. (2003). Qualitative data: An introduction to coding and analysis. New York: NYU press.

Bonora, E. & Sesti, G. (2016) Il diabete in Italia. Bologna: Bononia University Press.

Boursier, V., Manna, V., Gioia, F., Coppola, F., & Venosa, N. (2018). Cyber-moms facing motherhood: Holding functions and regressive movements in parenting websites. In Sekalala, S., & Niezgoda, B. C. (Eds.). Global Perspectives on Health Communication in the Age of Social Media (pp. 29-58). Hershey, PA: IGI Global.

Bruner, J., Wood, D. & Ross, G. (1976) “The role of tutoring in problem solving”. Journal of Child Psychology and Psychiatry,17, 89-100.

Bury, M. (1982). “Chronic illness as biographical disruption”. Sociology of health & illness, 4(2), 167-182.

Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage Publications.

Cohen, C., Marcelli, D. (2012). Psicopatologia del bambino. Milano: Elsevier.

Cordella, B., Greco, F., Carlini, K., Greco, A., &Tambelli, R. (2018). Infertilità e procreazione assistita: evoluzione legislativa e culturale in Italia. Rassegna di Psicologia, 35(3), 45-56.

De Luca Picione, R., Dicè, F., & Freda, M. F. (2015). “La comprensione della diagnosi di DSD da parte delle madri. Uno studio sui processi di sensemaking attraverso una prospettiva semiotico-psicologica”. Psicologia della Salute, 2, 47-75.

De Luca Picione, R., Martino, M. L., Freda, M. F. (2018). “Modal articulation: The psychological and semiotic functions of modalities in the sensemaking process”. Theory and Psychology, 28 (1), 84–103.

De Luca Picione, R., Martino, M. L., Freda, M. F. (2017). “Understanding cancer patients’ narratives: meaning-making process, temporality and modalities”. Journal of Constructivist Psychology, 30(4), 339-359.

De Luca Picione, R., Martino, M. L., Troisi, G. (2019). “The Semiotic Construction of the Sense of Agency. The Modal Articulation in Narrative Processes”. Integrative Psychological and Behavioral Science, 53(3), 431-449.

Di Cagno, L., Gandione, M., Massaglia P. (1992). Il contenimento delle angosce come momento terapeutico nel lavoro con genitori di bambini con patologia organica grave. In Vizziello, G. F. & Stern, D. N. (Eds), Dalle cure materne all’interpretazione (pp. 42-115). Milano: Raffaello Cortina.

Dicé, F., Dolce, P., & Freda, M. F. (2016). “Exploring emotions and the shared decision-making process in pediatric primary care”. Mediterranean Journal of Clinical Psychology, 4(3).

Dicé F., Dolce P., Maiello A. & Freda M.F. (2019). “Exploring emotions in dialog between health provider, parent and child. An observational study in pediatric primary care”. Pratiques Psychologiques.

Drotar, D. (2006). Psychological interventions in childhood chronic illness. American Psychological Association.

Elliot T.R., Shewchuk R.M., Richards J.S. (1999). “Caregiver social problem-solving abilities and family member adjustment to recent-onset physical disability”. Rehabilitation psychology, 44(1).

Esposito, G., Freda, M. F., & De Luca Picione, R. (2016). Reflexivity or “reflexivities” in higher education: Conceptualizing unique reflexive process. In M. F. Freda, J. Gonzàlez-Monteagudo, & G. Esposito (Eds.), Working with underachieving students in higher education: Fostering inclusion through narration and reflexivity (pp. 32-42). Abingdon: Routledge.

Ferguson, P. M. (2002). “A place in the family: An historical interpretation of research on parental reactions to having a child with a disability”. The journal of special education, 36(3), 124-131.

Freda, M. F. (2008). Narrazione e intervento in psicologia clinica: Costruire, pensare e trasformare narrazioni tra Logos e Pathos. Napoli: Liguori Editore.

Freda, M.F., Savarese, L., Dolce, P., De Luca Picione, R. (2019) “Caregivers’ sensemaking of children’s Hereditary Angioedema: a semiotic narrative analysis of the Sense of Grip on the Disease”. Frontiers in Psychology – Psychology for Clinical Settings, 10:2304.

Freda, M. F., Savarese, L., Bova, M., Galante, A., De Falco, R., De Luca Picione, R.,Triggiani, M. (2016b). “Stress and Psychological Factors in the Variable Clinical Phenotype of Hereditary Angioedema in Children: A Pilot Study”. Pediatric Allergy, Immunology, and Pulmonology, 29(1), 6–12.

Glaser, B. G., Strauss, A. L., & Strutzel, E. (1968). “The discovery of grounded theory; strategies for qualitative research”. Nursing research, 17(4), 364.

Goethals, E. R., Oris, L., Soenens, B., Berg, C. A., Prikken, S., VanBroeck, N., & Luyckx, K. (2017). “Parenting and treatment adherence in type 1 diabetes throughout adolescence and emerging adulthood”. Journal of pediatric psychology, 42(9), 922-932.

Guerriero V., De Campora G., Gnazzo A., Vegni E., Zavattini G.C. (2016). Parents facing their child disease: insights from attachment theory. In Alexandra M. Columbus (Eds.), Advances in Psychology Research (Vol. 126). Nova Science Publishers.

Kearney, P. M., & Griffin, T. (2001). “Between joy and sorrow: being a parent of a child with developmental disability”. Journal of advanced nursing, 34(5), 582-592.

Knox, E. C., Quirk, H., Glazebrook, C., Randell, T., & Blake, H. (2019).m “Impact of technology-based interventions for children and young people with type 1 diabetes on key diabetes self-management behaviours and prerequisites: a systematic review”. BMC endocrine disorders, 19(1), 7.

Lazarus, R. S., & Folkman, S. (1984). Coping and adaptation. In W. D. Gentry (Ed.), The handbook of behavioral medicine (pp. 282-325). New York: The Guilford Press.

Lecciso, F., & Petrocchi, S. (2012). Il figlio nella mente della madre. Strumenti di analisi della relazione e della reazione alla diagnosi in caso di malattia cronica infantile. Roma: Aracne.

Leventhal, H., Nerenz, D., & Straus, A. (1982). “Self-regulation and the mechanisms for symptom appraisal”. Symptoms, illness behaviour, and help-seeking, 3, 55-86.

Lubkin, I. M., & Larsen, P. D. (2006). Chronic illness: Impact and interventions., Massachusetts, USA: Jones & Bartlett Learning.

Lyons, A. C., & Chamberlain, K. (2006). Health psychology: A critical introduction. Cambridge University Press.

Main, M., & Goldwyn, R. (1984). “Predicting rejection of her infant from mother's representation of her own experience: Implications for the abused-abusing intergenerational cycle”. Child Abuse & Neglect, 8(2), 203-217.

Manna V. & Boursier V. (2018). “Mirroring effects: Using psychodynamic videofeedback to work on dyadic-risk. A pilot experience”. Psychodynamic Practice, 24,12, 2 (122-144).

Marchini, F., Caputo, A., Napoli, A., Balonan, J. T., Martino, G., Nannini, V., & Langher, V. (2018). “Chronic illness as loss of good self: underlying mechanisms affecting diabetes adaptation”. Mediterranean Journal of Clinical Psychology, 6(3).

Martino, M. L., Picione, R. D. L., Lemmo, D., Boursier, V., & Freda, M. F. (2019). “Meaning-Making Trajectories of Resilience in Narratives of Adolescents with MS”. Mediterranean Journal of Clinical Psychology, 7(2).

Martino, G., Catalano, A., Bellone, F., Russo, G. T., Vicario, C. M., Lasco, A., & Morabito, N. (2019). “As time goes by: anxiety negatively affects the perceived quality of life in patients with type 2 diabetes of long duration”. Frontiers in psychology, 10, 1779.

Martino, M.L., Lemmo, D., Gargiulo, A., Barberio, D., Abate, V., Avino, F., and Tortoriello, R. (2019). “Underfifty Women and Breast Cancer: Narrative Markers of Meaning-Making in Traumatic Experience”. Frontiers in Psychology, 10: 618, 1-12.

Marvin, R. S., & Pianta, R. C. (1996). “Mothers' reactions to their child's diagnosis: Relations with security of attachment”. Journal of Clinical Child Psychology, 25(4), 436-445.

Moström, P., Ahlén, E., Imberg, H., Hansson, P. O., & Lind, M. (2017). “Adherence of self-monitoring of blood glucose in persons with type 1 diabetes in Sweden”. BMJ Open Diabetes Research and Care, 5(1), e000342.

Parrello S., Giacco N. (2014), “Aggiungere vita ai giorni: la Distrofia Muscolare di Duchenne nella narrazione delle madri”. Psicologia della Salute, 1, 113-124.

Pelicand, J., Charlier, D., Maes, M., Henrard, S., & Aujoulat, I. (2018). “Metabolic control in adolescents with type 1 diabetes: looking at the role of perceived consistent parenting support of self-care”. Education Thérapeutique du Patient-Therapeutic Patient Education, 10(1), 10204.

Quiñones, A. R., Richardson, J., Freeman, M., Fu, R., O’Neil, M. E., Motu’apuaka, M., & Kansagara, D. (2014). “Educational group visits for the management of chronic health conditions: a systematic review”. Patient education and counseling, 95(1), 3-29.

Savarese, L. (2015). “Meaning making processes and management of illness unpredictability: the hereditary angioedema experience”. Mediterranean Journal of Clinical Psychology, 1 (3/2), 51-52.

Savarese L., Bova M., De Falco R, Guarino M. D., Siani G., Valerio P., Freda M.F. (2017) “The role of the meaning-making process in the management of hereditary angioedema” In M.F. Freda, R. De Luca Picione (Eds.), Health-Care and Culture: Subjectivity in Medical Context (pp. 59-77). Charlotte, USA: Information Age Publisher.

Savarese, L., Bova, M., De Falco, R., Guarino, M. D., De Luca Picione, R., Petraroli, A., Freda, M. F. (2018). “Emotional processes and stress in children affected by hereditary angioedema with C1-inhibitor deficiency: a multicenter, prospective study”. Orphanet Journal of Rare Diseases, 13(1).

Savarese, L. (2018). La narrazione come dispositivo normativo e regolativo dell’esperienza di malattia. Una ricerca narrativa sul Senso di Padronanza Genitoriale della Malattia Cronica (SdiP-M(G)) e la validazione di un’Intervista ad hoc. Tesi di dottorato, Università degli Studi di Napoli “Federico II”. http://www.fedoa.unina.it/id/eprint/12298.

Settineri, S., Frisone, F., Merlo, E. M., Geraci, D., & Martino, G. (2019). “Compliance, adherence, concordance, empowerment, and self-management: five words to manifest a relational maladjustment in diabetes”. Journal of multidisciplinary healthcare, 12, 299.

Sroufe, L. A. (1997). Emotional development: The organization of emotional life in the early years. Cambridge University Press.

Tronick E. (2011). “La costruzione multilivello del significato e l'espansione diadica del modello della coscienza. Il flusso di significato emozionale, polimorfico e polisemico”. In Fosha, D., Siegel, D. J., & Solomon, M. F. Attraversare le emozioni. Neuroscienze e psicologia dello sviluppo (pp. 131-164). Milano, IT: Mimesis.

Zani, B., & Cicognani, E. (2000). Psicologia della salute. Bologna: Il mulino.




DOI: https://doi.org/10.6092/2282-1619/2019.7.2187

Refbacks

  • There are currently no refbacks.