The Sense of Grip on Chronic disease: a mixed-method research with adults affected by He-reditary Angioedema

Journal title PSICOLOGIA DELLA SALUTE
Author/s Assunta Maiello, Livia Savarese, Raffaele De Luca Picione, Ersilia Auriemma, Daniela Pacella, Maria Bova, Mauro Cancian, Andrea Zanichelli, Giuseppe Spadaro, Maria Francesca Freda
Publishing Year 2022 Issue 2022/2 Language Italian
Pages 25 P. 55-79 File size 311 KB
DOI 10.3280/PDS2022-002005
DOI is like a bar code for intellectual property: to have more infomation click here

Below, you can see the article first page

If you want to buy this article in PDF format, you can do it, following the instructions to buy download credits

Article preview

FrancoAngeli is member of Publishers International Linking Association, Inc (PILA), a not-for-profit association which run the CrossRef service enabling links to and from online scholarly content.

The condition of chronicity implies the need of a reorganization of one’s existence, both in the immediate and in the long term, due to the changes in personal resources and social roles and because of the constraints imposed by the disease. The Sense of Grip on Chronic Disease (SdiP-M) model intends to focus on the role of sensemaking processes in the psychological adjustment to illness, emphasizing the patient’s role and his skills in managing his health condition. In this study, the authors propose a mixed method research which implies the adaptation of the narrative interview on the Sense of Grip on chronic Disease. The interview was administered to 28 adults suffering from Hereditary Angioedema and has been analysed with a theory driven approach, aims at exploring the modalities of five narrative functions: temporal articulation, integration of the experience in everyday life, emotion regulation, social support and coping. Through a Multiple Corrispondence Analysis and a cluster analysis, the authors have identified three different Sense of Grip on Disease Profiles, representative of different degrees of flexibility, integration and adjustment to disease. Results suggest that Quality of Life is related to promotion of processes involved in Sense of Grip on Chronic Disease: these processes are relevant for supporting patient and healthcare system engagement.

Keywords: chronic disease, narrative interview, sensemaking process, engagement.

  1. Jowsey T. (2016). Time and chronic illness: a narrative review. Quality of Life Research, 25(5): 1093-1102.
  2. Karakus M.C. and Patton L.C. (2011). Depression and the onset of chronic illness in older adults: A 12-year prospective study. The Journal of Behavioral Health Services & Research, 38(3): 373-382.
  3. Asbring P. (2001). Chronic illness–a disruption in life: identity‐transformation among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 34(3): 312-319.
  4. Aujoulat I., d’Hoore W. and Deccache A. (2007). Patient empowerment in theory and practice: polysemy or cacophony? Patient Education and Counseling, 66 (1): 13-20.
  5. Aujoulat I., Marcolongo R., Bonadiman L. and Deccache A. (2008). Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control. Social Science & Medicine, 66(5): 1228-1239.
  6. Bazzoli F., Foresti M., Scarano E., Campaner R., Magini P., Seri M., Cavazza M., Mazzanti L., Zagari R.M., Cenacchi G., Perri A. e Zullo S., Le malattie rare. -- Retrived from: https://cris.unibo.it/retrieve/handle/11585/820355/793032/1088Press_Le-malattie-rare_WEB.pdf
  7. Bertini M. (2012). Psicologia della Salute. Raffaello Cortina Editore.
  8. Bertini M., Freda F. M., Fulcheri M., Carrozzino D., Molinari E., Solano E. (2014). Commenti all’articolo Pratiche di salute, pratiche di psicologia: per una professionalizzazione della Psicologia della Salute in Italia. Psicologia della Salute (2): 26-55. DOI: 10.3280/PDS2014-00200
  9. Brockmeier J. (2000). Autobiographical Time, Narrative Inquiry,  10 (1): 51-73.
  10. Bruner J. (2004). The Narrative Creation of Self. In: Angus L.E. and McLeod J. (eds.), The handbook of narrative and psychotherapy: Practice, theory, and research, Sage Publications, pp. 3-14. DOI: 10.4135/9781412973496.d3
  11. Bruner J.S. (1990). Acts of Meaning. London, UK: Harvard University Press.
  12. Canguilhem G. (1978). From the Social to the Vital. In: On the Normal and the Pathological. Studies in the History of Modern Science, vol 3. Springer, Dordrecht. DOI: 10.1007/978-94-009-9853-7_1
  13. Caputo A. (2013). La rappresentazione narrativa della malattia rara: uno studio qualitativo sulle esperienze dei pazienti. Psycofenia: Ricerca ed Analisi Psicologica, 28: 73-98.
  14. Charon R. (2008). Narrative medicine: Honoring the stories of illness. Oxford: University Press.
  15. Clarke D.M. and Currie K.C. (2009). Depression, anxiety and their relationship with chronic diseases: a review of the epidemiology, risk and treatment evidence. Medical Journal of Australia, 190: S54-S60.
  16. Coleman M.T. and Newton K.S. (2005). Supporting self-management in patients with chronic illness. American Family Physician, 72 (8): 1503-1510.
  17. Crossley M.L. (2000). Narrative psychology, trauma and the study of self/identity. Theory & Psychology, 10(4): 527-546. DOI: 10.1177/095935430010400
  18. De Luca Picione R. and Valsiner J. (2017). Psychological functions of semiotic borders in sense- making: Liminality of narrative processes. Europe’s Journal of Psychology, 13 (3): 532-547
  19. De Luca Picione R. e Freda M.F. (2012). Senso e significato. (Sense and meaning). Rivista di Psicologia Clinica, 2 (17).
  20. De Luca Picione R., Martino M.L. e Freda M.F. (2018). Modal articulation: The psychological and 11 semiotic functions of modalities in the sensemaking process. Theory and Psychology, 28 (1): 84-103. DOI: 10.1177/0959354317743580
  21. De Luca Picione R., Martino M.L. e Troisi G. (2019). The Semiotic Construction of the Sense of 7 Agency. The Modal Articulation in Narrative Processes. Integrative Psychological and Behavioral Science, 53 (3): 431-449.
  22. Dicé F., Dolce P., Maiello A. and Freda M.F. (2020). Exploring emotions in dialog between health provider, parent and child. An observational study in pediatric primary care. Pratiques Psychologiques. 26(1): 69-84.
  23. Dicé F., Dolce P., Maiello A. and Freda M.F. (2021 – in press). Sharing medical decisions with the child. An exploratory survey in paediatric primary care. Child Care in Practice. 1-12. DOI: 10.1080/13575279.2021.191048
  24. Janoff-Bulman R. (2004). Posttraumatic Growth: Three Explanatory Models. Psychological Inquiry, 15(1): 30-34.
  25. Dicker D., Nguyen G., Abate D., Abate K.H., Abay S.M., Abbafati C. and Abdelalim A. (2018). Global, regional, and national age-sex-specific mortality and life expectancy, 1950–2017: a systematic analysis for the Global Burden of Disease Study 2017. The Lancet, 392 (10159): 1684-1735.
  26. Freda M.F. (2008). Narrazione e intervento in psicologia clinica: Costruire, pensare e trasformare narrazioni tra Logos e Pathos. Napoli: Liguori Editore.
  27. Freda M.F. (2011). Understanding continuity to recognize discontinuity. Integrative Psychological and Behavioral Science, 45(3): 335-346.
  28. Freda M.F., De Luca Picione R., Nedergaard J. and Salvatore S. (2018). Idiographic Approach to Health. Yearbook of Idiographic Science. IAP, 2018.
  29. Freda M.F., Dicè F. and De Luca Picione R. (2015). A methodological proposal of integration: The Psychological Scaffolding for the healthcare relationship. Rivista di Psicologia Clinica, (2): 11-25.
  30. Freda M.F., Savarese L., Bova M., Galante A., De Falco R., De Luca Picione R., Marone G., Petraroli A., Siani G., Valerio P. e Trigiani, M. (2016). Stress and psychological factors in the variable clinical phenotype of Herediatry Angioedema in children: A pilot study. Pediatric Allergy, Immunology, and Pulmonology, 29(1): 6-12.
  31. Freda M.F., Savarese L., De Falco R. Traverso C., Zito E. and Zabotto M. (2016). Resolution of the diagnosis, parents-children dialogues and management strategies of the disease. Mediterranean Journal of Clinical Psychology, Suppl. 4/2: 30.
  32. Freda M.F., Savarese L., Dolce P. and 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, 10: 2609.
  33. Garro L.C. (1994). Narrative representations of chronic illness experience: cultural models of illness, mind, and body in stories concerning the temporomandibular joint (TMJ). Social Science & Medicine, 38(6): 775-788. DOI: 10.1016/0277-9536(94)90150-
  34. Goffman E. (1959). The presentation of self in everyday life. New York: Doubleday.
  35. Graffigna G. e Barello S. (2018). Engagement: un nuovo modello di partecipazione in sanità. Roma: Il Pensiero Scientifico Editore.
  36. Graffigna G., Barello S., Riva G., Castelnuovo G., Corbo M., Coppola L., Daverio G., Fauci A., Iannone P., Ricciardi W., Bosio A.C. and CCIPE Working Group (2017). Recommandation for patient engagement promotion in care and cure for chronic conditions. Recenti Prog. Med., 108: 455-475. DOI: 10.1701/2812.28441.
  37. Hartog I., Scherer-Rath M., Kruizinga R., Netjes J., Henriques J., Nieuwkerk P., Sprangers M. and van Laarhoven H. (2020). Narrative meaning making and integration: Toward a better understanding of the way falling ill influences quality of life. Journal of Health Psychology, 25(6): 738-754. DOI: 10.1177/135910531773182
  38. Horowitz M.J. (1976). Diagnosis and treatment of stress response syndromes: General principles. In: Parad H.J., Resnik H.L.P. and Parad L.G. (eds.), Emergency and disaster management: A mental health sourcebook. Maryland: The Charles Press Publishers, pp. 259-69.
  39. Hurst J.R., Dickhaus J., Maulik P.K., Miranda J.J., Pastakia S.D., Soriano J.B. and van der Kleij R.M. (2018). Global Alliance for Chronic Disease researchers’ statement on multimorbidity. The Lancet Global Health, 6 (12): e1270-e1271. DOI: 10.1016/S2214-109X(18)30391-7
  40. Hydén L.C. (1997). Illness and narrative. Sociology of Health & Illness, 19(1): 48-69.
  41. Jacobi S. and MacLeod R. (2011). Making sense of chronic illness – a therapeutic approach. Journal of Primary Health Care, 3: 136-141. DOI: 10.1071/HC1113
  42. Kemp J.G. and Craig, T.J. (2009). Variability of prodromal signs and symptoms associated with hereditary angioedema attacks: A literature review. Allergy and Asthma Proceedings, 30 (5): 493-9.
  43. Kleinman A. (1992). Local worlds of suffering: An interpersonal focus for ethnographies of illness experience. Qualitative Health Research, 2(2), 127-134. DOI: 10.1177/10497323920020020
  44. Kodraliu G., Mosconi P., Groth N., Carmosino G., Perilli A., Gianicolo E.A., Rossi C. and Apolone G. (2001). Subjective health status assessment: evaluation of the Italian version of the SF-12 Health Survey. Results from the MiOS Project. J Epidemiol Biostat, 6 (3): 305-316. DOI: 10.1080/13595220131708071
  45. Krzemińska S.A. and Kostka A.M. (2021). Acceptance of illness and quality of life in patients with type 2 diabetes. Journal of Education, Health and Sport, 11(5), 86-100.  DOI: 10.12775/JEHS.2021.11.05.00
  46. Leventhal H., Weinman J., Leventhal E.A. and Phillips L.A. (2008). Health Psychology: The Search for Pathways between Behavior and Health. Annual Review of Psychology, 59 (1): 477-505.
  47. Livneh H. (2001). Psychosocial Adaptation to Chronic Illness and Disability: A Conceptual Framework. Rehabilitation Counseling Bulletin, 44(3): 151-160. DOI: 10.1177/00343552010440030
  48. Lorig K.R., Sobel D.S., Ritter P.L., Laurent D. and Hobbs M. (2001). Effect of a self-management program on patients with chronic disease. Effective Clinical Practice: ECP, 4(6): 256-262. DOI: 10.1177/147451511880412
  49. Martino M.L., Lemmo D., Gargiulo A., Barberio D., Abate V., Avino F. and Freda M.F. (2021). Changes of narrative meaning-making markers during the different phases of breast cancer treatment for women below 50 years old. Health Psychology Report, 9(1).
  50. 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.
  51. Park C.L. (2010). Making sense of the meaning literature: an integrative review of meaning making and its effects on adjustment to stressful life events. Psychological Bulletin, 136(2): 257.
  52. Penn P. (2001). Chronic illness: Trauma, language, and writing: Breaking the silence. Family Process, 40(1): 33-52.
  53. Salvatore S. and Freda, M.F. (2011). Affect, unconscious and sensemaking. A psychodynamic, semiotic and dialogic model. New Ideas in Psychology, 29 (2): 119-135.
  54. 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. Doctoral thesis -- http://fedoa.unina.it/id/eprint/12298.
  55. Savarese L., Bova M., De Falco R., Guarino M.D., Siani G., Valerio P. and Freda M.F. (2017). The role 4 of the meaning-making process in the management of hereditary angioedema. In: Freda M.F. and De Luca Picione R. (eds.), Health-Care and Culture: Subjectivity in Medical Context. USA, Charlotte: Information Age Publisher, pp. 59-77.
  56. Savarese L., Bova M., Maiello A., Mormile I., Petraroli A., Spadaro G., Senter R., Cancian M., Zanichelli A. and Freda M.F. (2020). Psychological stress, emotion regulation and health engagement in adults with Hereditary Angioedema with C1 inhibitor deficiency E-Poster Presentation Eaaci Digital Congress, London, 6-8 June 2020 (E-POSTER NUMBER 0872).
  57. Savarese L., Bova M., Maiello A., Petraroli A., Mormile I., Cancian M., Senter R., Zanichelli A., Spadaro G. and Freda M.F. (2021). Psychological processes in the experience of hereditary angioedema in adult patients: an observational study. Orphanet Journal of Rare Diseases, 16 (1): 1-7.
  58. Schiff B. (2012). The Function of Narrative: Toward a Narrative Psychology of Meaning. Narrative Matters, 2(1): 33-47.
  59. Schiff B. (2017). A new narrative for psychology. Oxford University Press.
  60. Sharpe L. and Curran L. (2006). Understanding the process of adjustment to illness. Social Science & Medicine, 62(5): 1153-1166.
  61. Sools A.M., Murray M. and Westerhof G.J. (2015). Narrative health psychology: Once more unto the breach. Journal of Health Psychology, 20(3): 239-245. DOI: 10.1177/135910531456661
  62. Thornton T. (2010). Narrative rather than Idiographic approaches as counterpart to the nomothetic approach to assessment. Psychopathology, 43: 252-261. DOI: 10.1159/00031512
  63. Tronick E. and Beeghly M. (2011). Infants’ meaning-making and the development of mental health problems. American Psychologist, 66 (2): 107.
  64. Williams S. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health & Illness, 22(1): 40-67.
  65. Zotter Z., Csuka D., Szabó E., Czaller I., Nébenführer Z., Temesszentandrási G., Fust G., Varga L and Farkas H. (2014). The influence of trigger factors on hereditary angioedema due to C1-inhibitor deficiency. Orphanet Journal of Rare Diseases, 9(1): 1-6. DOI: 10.1186/1750-1172-9-44.

Assunta Maiello, Livia Savarese, Raffaele De Luca Picione, Ersilia Auriemma, Daniela Pacella, Maria Bova, Mauro Cancian, Andrea Zanichelli, Giuseppe Spadaro, Maria Francesca Freda, Il Senso di Padronanza della Malattia Cronica: una ricerca mixed Method con adulti affetti da Angioedema Ereditario in "PSICOLOGIA DELLA SALUTE" 2/2022, pp 55-79, DOI: 10.3280/PDS2022-002005