Top

The Patient - Patient-Centered Outcomes Research

Published in:

01-01-2011 | Original Research Article

Family Burden after Severe Brain Injury

The Italian Experience with Families and Volunteer Associations

Authors: Dr Paola Mosconi, Mariangela Taricco, Mirna Bergamini, Luisella Bosisio Fazzi, Cinzia Colombo, Valentina Patrucco, Marinella Corti, Dario Giobbe, Massimo Guerreschi, Maria Rita Magnarella, Giovanni Sallemi

Published in: The Patient - Patient-Centered Outcomes Research | Issue 1/2011

Abstract

Background: As part of the development of the Italian National Consensus Conference investigating the period from the hospital rehabilitation of patients with severe brain injury to their return to the community, a working group was appointed to identify the needs of brain injury patients and their families in Italy.

Methods: Two postal self-administered survey questionnaires were carried out: one targeted families of patients with severe brain injury to evaluate their objective and subjective burdens and needs; the other focused on the viewpoints of volunteer associations helping people with severe brain injury. Issues explored were quality of discharge from hospital (information received, family participation, etc.), needs of the family (work, financial resources, spare time, relationships with friends and other relatives), and the viewpoint of volunteer associations.

Results: A total of 234 families (54% of sample) of patients (69% male, mean age 41 years) with severe brain injury returned the questionnaire. Most said they had been involved and informed in the hospital discharge process; about 17% had not been involved at all and only about one-third of families received satisfactory support during the discharge phase. Few families received any help from community social services (10%). Almost two-thirds of families had experienced financial difficulties and, in many cases, one family member had to change his/her work situation. Families’ social relationships, travelling, hobbies, and spare time were significantly reduced.

The 57 volunteer associations who returned the survey (84% response rate) confirmed that their members had experienced the same difficulties.

Conclusions: Considering the difficulties and problems documented by these two surveys, more research is needed on effective interventions to support patients with severe brain injury and their families, particularly during the discharge phase from hospital to home and community life.

Brooks DN. The head-injury family. J Clin Exp Neuropsychol 1991; 13: 155–88CrossRef

Kreutzer JS, Marwitz JH, Kepler K. Traumatic brain injury: family response and outcome. Arch Phys Med Rehabil 1992; 73: 71–8

Degeneffe CE. Family caregiving and traumatic brain injury. Health Soc Work 2001; 4: 257–68CrossRef

Lezak MD. Brain damage is a family affair. J Clin Exp Neuropsychol 1988; 10: 111–23PubMedCrossRef

Curtiss G, Klemz S, Vanderploeg RD. Acute impact of severe traumatic brain injury on family structure and coping responses. J Head Trauma Rehabil 2000; 5: 1113–22CrossRef

Verhaeghe S, Defloor T, Van Zuuren F, et al. The needs and experiences of family members of adult patients in an intensive care unit: a review of the literature. J Clin Nurs 2005; 14: 501–9PubMedCrossRef

Kosciulek JF. Relationship of family schema to family adaptation to brain injury. Brain Inj 1997; 11: 821–30PubMedCrossRef

Gillen R, Tennen H, Affleck G, et al. Distress, depressive symptoms, and depressive disorder among caregivers of patients with brain injury. J Head Trauma Rehabil 1998; 13: 31–43PubMedCrossRef

Verhaeghe S, Defloor T, Grypdonck M. Stress and coping among families of patients with traumatic brain injury: a review of the literature. J Clin Nurs 2005; 14: 1004–12PubMedCrossRef

10.

Perlesz A, Kinsella G, Crowe S. Psychological distress and family satisfaction following traumatic brain injury: injured individuals and their primary, secondary, and tertiary carers. J Head Trauma Rehabil 2000; 15: 909–29PubMedCrossRef

11.

Serio CD, Kreutzer JS, Witol AD. Family needs after traumatic brain injury: a factor analytic study of the Family Needs Questionnaire. Brain Inj 1997; 11:1–9PubMedCrossRef

12.

Wood RLl, Yurdakul LK. Change in relationship status following traumatic brain injury. Brain Inj 1997; 11: 491–502PubMed

13.

Brooks N, Campsie L, Symington C, et al. The five year outcome of severe blunt head injury: a relative’s view. J Neurol Neurosurg Psychiatr 1986; 49: 764–70PubMedCrossRef

14.

Kolakowsky-Hayner SA, Miner KD et al. Long-term life quality and family needs after traumatic brain injury. J Head Trauma Rehabil 2001; 16: 374–85PubMedCrossRef

15.

Marsh NV, Kersel DA, Havill JA, et al. Caregiver burden during the year following severe traumatic brain injury. J Clin Exp Neuropsychol 2002; 24: 434–47PubMedCrossRef

16.

McMordie WR, Barker SL. The financial trauma of head injury. Brain Inj 1988; 2: 357–64PubMedCrossRef

17.

Hall KM, Karzmark P, Stevens M, et al. Family stressors in traumatic brain injury: a two-year follow-up. Arch Phys Med Rehabil 1994; 75: 876–84PubMedCrossRef

18.

Smith JE, Smith DL. No map, no guide: family caregivers’ perspectives on their journeys through the system. Care Manag J 2000; 2: 27–33PubMed

19.

Morris KC. Psychological distress in carers of head injured individuals: the provision of written information. Brain Inj 2001; 15: 239–54PubMedCrossRef

20.

Ergh TC, Hanks RA, Rapport LJ, et al. Social support moderates caregiver life satisfaction following traumatic brain injury. J Clin Exp Neuropsychol 2003; 25: 1090–101PubMedCrossRef

21.

Tyerman A, Booth J. Family interventions after traumatic brain injury: a service example. NeuroRehabilitation 2001; 16: 59–66PubMed

22.

Kreutzer JS, Kolakowsky-Hayner SA, Demm SR, et al. A structured approach to family intervention after brain injury. J Head Trauma Rehabil 2002; 17: 349–67PubMedCrossRef

23.

Hibbard MR, Cantor J, Charatz H, et al. Peer support in the community: initial findings of a mentoring program for individuals with traumatic brain injury and their families. J Head Trauma Rehabil 2002; 17: 112–31PubMedCrossRef

24.

Shames J, Treger I, Ring H, et al. Return to work following traumatic brain injury: trends and challenges. Disabil Rehabil 2007; 29: 1387–95PubMedCrossRef

25.

Taricco M, De Tanti A, Boldrini P, et al. National Consensus Conference. The rehabilitation management of traumatic brain injury patients during the acute phase: criteria for referral and transfer from intensive care units to rehabilitative facilities (Modena June 20–21, 2000). Eura Medicophys 2006; 42: 73–84PubMed

26.

Allasia F, Cannoni I, Cattelani R, et al. Report of the families’ working group. G Ital Med Riabil 2001; 1: 73–8

27.

Apolone G, Boldrini P, Avesani R, et al. 2° Conferenza Nazionale di Consenso: Bisogni riabilitativi ed assistenziali delle persone con disabilità da grave cerebrolesione acquisita (GCA) e delle loro famiglie, nella fase post-ospedaliera. Ital J Rehabil Med 2007; 21: 29–51

28.

Zampolini M. The rehabilitation of severe brain injury in Italy: the GISCAR study. The 2nd World Congress of International Society of Physical and Rehabilitation Medicine (ISPRM); 2003 May 18–22; Prague

29.

Teasdale G, Jennett B. Assessment of coma and impaired consciousness: a practical scale. Lancet 1974; 2: 81–4PubMedCrossRef

30.

Teasdale GM, Pettigrew LE, Wilson JT, et al. Analyzing outcome of treatment of severe head injury: a review and update on advancing the use of the GOS. J Neurotrauma 1998; 15: 587–97PubMedCrossRef

31.

Magnarella MR, Basaglia N, Boldrini P, et al. Adattamento del nucleo familiare alla disabilità. Valutazione in un gruppo di pazienti con grave danno cerebrale. G Ital Med Riabil 2002; 16: 19–29

32.

Mosconi P, Kodraliu G. Italian forum of Europa Donna: a survey of breast cancer associations. Health Expect 1999; 2(1): 44–50PubMedCrossRef

33.

Mosconi P, Colombo C, Satolli R, et al. PartecipaSalute, an Italian project to involve lay people, patients’ associations and scientific-medical representatives in the health debate. Health Expect 2007; 10: 194–204PubMedCrossRef

34.

Sinnakaruppan I, Williams DM. Family carers and the adult head-injured: a critical review of carers’ needs. Brain Inj 2001; 15: 653–72PubMedCrossRef

35.

Hawley CA, Ward AB, Magnay AR, et al. Parental stress and burden following traumatic brain injury amongst children and adolescents. Brain Inj 2003; 17: 1–23PubMedCrossRef

36.

McMordie WR, Rogers KF, Barker SL. Consumer satisfaction with services provided to head-injured patients and their families. Brain Inj 1991; 5: 43–51PubMedCrossRef

37.

Sinnakaruppan I, Williams DM. Head injury and family carers: a critical appraisal of case management programmes in the community. Int J Rehabil Res 2001; 24: 35–42PubMedCrossRef

38.

Boschen K, Gargaro J, Gan C, et al. Family interventions after acquired brain injury and other chronic conditions: a critical appraisal of the quality of the evidence. Neuro-Rehabilitation 2007; 22: 19–41PubMed

39.

McCabe P, Lippert C, Weiser M, et al. Community reintegration following acquired brain injury. Brain Inj 2007; 21:231–57PubMedCrossRef

40.

Rivera PA, Elliott TR, Berry JW, et al. Problem-solving training for family caregivers of persons with traumatic brain injuries: a randomized controlled trial. Arch Phys Med Rehabil 2008; 89: 931–41PubMedCrossRef

Title: Family Burden after Severe Brain Injury
The Italian Experience with Families and Volunteer Associations
Authors: Dr Paola Mosconi
Mariangela Taricco
Mirna Bergamini
Luisella Bosisio Fazzi
Cinzia Colombo
Valentina Patrucco
Marinella Corti
Dario Giobbe
Massimo Guerreschi
Maria Rita Magnarella
Giovanni Sallemi
Publication date: 01-01-2011
Publisher: Springer International Publishing
Published in: The Patient - Patient-Centered Outcomes Research / Issue 1/2011
Print ISSN: 1178-1653
Electronic ISSN: 1178-1661
DOI: https://doi.org/10.2165/11535550-000000000-00000

Live Webinar | 27-06-2024 | 18:00 (CEST)

Keynote webinar | Spotlight on medication adherence

Reserve your place

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

WHO estimates that half of all patients worldwide are non-adherent to their prescribed medication. The consequences of poor adherence can be catastrophic, on both the individual and population level.

Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.

Prof. Kevin Dolgin

Prof. Florian Limbourg

Prof. Anoop Chauhan

Developed by: Springer Medicine

Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 1/2011

Public and Patient Involvement at the UK National Institute for Health and Clinical Excellence

Understanding and Assessing the Impact of End-Stage Renal Disease on Quality of Life

Patient Preferences for Treatment of Achilles Tendon Pain

A Qualitative Study on Feasibility of a Web-Based Women’s Health Portal and Information System

Patient-Reported Outcomes, Patient-Reported Information

Development of an Electronic Daily Uterine Fibroid Symptom Diary

Keynote webinar | Spotlight on medication adherence

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

At a glance: The STEP trials