User-centered practices in the eyes of informal caregivers of in-patients with severe acquired brain injury: needs, caring experience, and satisfaction

Girardi, Giovanna; Farnese, Maria Luisa; Scarponi, F.; Tanti, Antonio De; Bartolo, Michelangelo; Intiso, Domenico; Formisano, Rita; Antonucci, Gabriella

doi:10.1080/02699052.2021.1972338

Cited by 2 publications

(3 citation statements)

References 77 publications

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“…Indeed, this acknowledgment could be the preparatory step toward an Italian Consensus Conference on the clinical and management pathways of DC/CP patients admitted to neurorehabilitation, which should involve not only neurosurgeons and rehabilitation physicians but also the scientific societies of all the stakeholders engaged in the DC/CP care pathways. Furthermore, as the caregiver involvement in the surgical decision-making processes is an essential element of quality of care in rehabilitation 49 (as recently recommended by an Italian Consensus Conference promoted by families of individuals affected by sABI 50 ), the associations of patients’ families should be considered stakeholders of paramount importance.…”

Section: Discussionmentioning

confidence: 99%

When the practice does not meet the theory: results from an Italian survey on the clinical and pathway management of inpatients with decompressive craniectomy or cranioplasty admitted to rehabilitation

Porta

Formisano

Iaccarino

et al. 2023

Eur J Phys Rehabil Med

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BACKGROUND Cranioplasty (CP) is supposed to improve the functional outcome of severe acquired brain injury (sABI) patients with decompressive craniectomy (DC). However, ongoing controversies exist regarding its indications, optimum materials, timing, complications, and relationships with hydrocephalus (HC). For these reasons, an International Consensus Conference (ICC) on CP in traumatic brain injury (TBI) was held in June 2018 to issue some recommendations. AIM The aims of this study were: to investigate cross-sectionally before the ICC the prevalence of DC/CP in sABI inpatients admitted to neurorehabilitation units in Italy; to assess the perception of Italian clinicians working in the sABI neurorehabilitation settings on the management of inpatients with DC/CP during their rehabilitation stay. DESIGN Cross-sectional. SETTING AND POPULATION Physiatrists or neurologists working in 38 Italian rehabilitation centers involved in the care of sABI, giving a pooled sample of 599 inpatients. METHODS Survey questionnaire consisting of 21 closed-ended questions with multiple-choice answers. Sixteen questions regarded the respondents’ opinions and experiences regarding the clinical and management aspects of patients. Survey data were collected via e-mail between April and May 2018. RESULTS About 1/3 of the 599 inpatients had either a DC (18.9%) or a CP (13.5%). TBI and cerebral hemorrhage were strongly associated with DC/CP, although the association was much stronger for TBI. Significant discrepancies were uncovered between some of the recommendations of the ICC and the corresponding perceptions of the respondents, especially regarding the clinical management of patients ( i.e. , CP timing). Clear guidelines were perceived as the most crucial factor in improving clinical pathways. CONCLUSIONS Early collaboration between the neurosurgical and the neurorehabilitation teams is crucial to optimize all clinical and organizational factors, which could expedite CP and minimize the risk of complications, such as infections and HC, to ensure the best possible outcome for DC patients, regardless of the etiology of the sABI. CLINICAL REHABILITATION IMPACT There may be different attitudes and perceptions, if not controversies, between neurorehabilitation physicians and neurosurgeons regarding the optimal clinical and care pathway management of patients with DC/CP in Italy. Therefore, an Italian Consensus Conference involving all stakeholders on the clinical and management pathways of DC/CP patients admitted to neurorehabilitation is advocated.

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Section: Discussionmentioning

confidence: 99%

When the practice does not meet the theory: results from an Italian survey on the clinical and pathway management of inpatients with decompressive craniectomy or cranioplasty admitted to rehabilitation

Porta

Formisano

Iaccarino

et al. 2023

Eur J Phys Rehabil Med

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“…Hargreaves et al, 2023) and other acquired but non-transmittable conditions (e.g. Everhart et al, 2020;Girardi et al, 2021).…”

Section: Theoretical Contributionsmentioning

confidence: 99%

“…However, not much is known regarding the information needs of informal carers of HIV/AIDS patient and even less with regards to these needs within the Global South. Currently, research on the information needs of informal carers tends to be Western-based and centred around e.g., age-related frailties (e.g., Robben et al, 2012), cancer (e.g., Beaver & Witham, 2007), dementia (e.g., Hargreaves et al, 2022) and other acquired but non-transmittable conditions (e.g., Everhart et al, 2020;Girardi et al, 2021).…”

Section: Theoretical Contributionsmentioning

confidence: 99%

Addressing the information needs of informal carers in Malawi: a healthcare intervention based on co-creation

Zamani

Sbaffi

Kalua

2023

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PurposeThe aim of this study was to address the unmet information needs of Malawian informal carers. We report on a three-year project which we co-created with informal carers, medical doctors and NGOs with the view to disseminate health advisory messages.Design/methodology/approachThis study was developed on the principles of co-production. The impact of our health advisory messaging approach was assessed through observations and questionnaire-based surveys for quality, clarity and usefulness.FindingsThe messages were disseminated beyond the local support groups and reached a much wider community via word of mouth. The messages also led to short and medium term benefits for informal carers and their loved ones.Originality/valueOur findings highlight the importance of understanding the contextual conditions of informal caring and that of co-producing interventions with the people these aim to benefit.

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User-centered practices in the eyes of informal caregivers of in-patients with severe acquired brain injury: needs, caring experience, and satisfaction

Cited by 2 publications

References 77 publications

When the practice does not meet the theory: results from an Italian survey on the clinical and pathway management of inpatients with decompressive craniectomy or cranioplasty admitted to rehabilitation

When the practice does not meet the theory: results from an Italian survey on the clinical and pathway management of inpatients with decompressive craniectomy or cranioplasty admitted to rehabilitation

Addressing the information needs of informal carers in Malawi: a healthcare intervention based on co-creation

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