Family needs after brain injury: A cross cultural study

Norup, Anne; Perrin, Paul B.; Cuberos-Urbano, Gustavo; Anke, Audny; Anđelić, Nada; Doyle, Sarah T.; Quijano, María Cristina; Caracuel, Alfonso; Mar, Dulce; Jove, Irma Guadalupe Espinosa; Arango‐Lasprilla, Juan Carlos

doi:10.3233/nre-151208

Cited by 39 publications

(35 citation statements)

References 47 publications

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“…In addition, there is the issue of social desirable bias when completing questionnaires addressing experiences and satisfaction. Instruments on family needs after TBI focus on health information together with support and involvement with care [ 38 , 39 ]. These areas are all included in the subscale information in the FECQ-TBI [ 20 ].…”

Section: Discussionmentioning

confidence: 99%

Family members’ experience with in-hospital health care after severe traumatic brain injury: a national multicentre study

Manskow

Arntzen

Damsgård

et al. 2018

BMC Health Serv Res

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BackgroundFamily member’s experience and satisfaction of health care in the acute care and in-patient rehabilitation are important indicators of the quality of health care services provided to patients with severe traumatic brain injury (TBI). The objective was to assess family members’ experience of the health care provided in-hospital to patients with severe TBI, to relate experiences to family member and patient demographics, patients’ function and rehabilitation pathways.MethodsProspective national multicentre study of 122 family members of patients with severe TBI. The family experience of care questionnaire in severe traumatic brain injury (FECQ-TBI) was applied. Independent sample t-tests or analysis of variance (ANOVA) were used to compare the means between 2 or more groups. Paired samples t-tests were used to investigate differences between experience in the acute and rehabilitation phases.ResultsBest family members` experience were found regarding information during the acute phase, poorest scores were related to discharge. A significantly better care experience was reported in the acute phase compared with the rehabilitation phase (p < 0.05). Worst family members` experience was related to information about consequences of the injury. Patient’s dependency level (p < 0.05) and transferral to non-specialized rehabilitation were related to a worse family members` experience (p < 0.01).ConclusionsThis study underscores the need of better information to family members of patients with severe TBI in the rehabilitation as well as the discharge phase. The results may be important to improve the services provided to family members and individuals with severe TBI.

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Section: Discussionmentioning

confidence: 99%

Family members’ experience with in-hospital health care after severe traumatic brain injury: a national multicentre study

Manskow

Arntzen

Damsgård

et al. 2018

BMC Health Serv Res

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“…Of the domains of general importance for health care services, of great significance is information , an area often found in family satisfaction studies to require improvement [25, 34]. Additionally, instruments on family needs after TBI focus on health information together with support and involvement with care [33, 35]: these areas are included in the factor/subscale information in the FECQ-TBI. The second rehabilitation-related factor is organization, which is a significantly important domain for seriously ill patients in the intensive care unit (ICU) and for patients with a long length of stay [36].…”

Section: Discussionmentioning

confidence: 99%

“…The intention of developing a questionnaire that covers most central care experiences was most probable achieved. Content adequacy and validity could be checked in further studies to assure the usefulness of the questionnaire in countries with different health care pathways and care delivery than Norway [35]. Another possible limitation is that not all suggested scales are based on factor analysis of all of the available items.…”

Section: Discussionmentioning

confidence: 99%

The family experiences of in-hospital care questionnaire in severe traumatic brain injury (FECQ-TBI): a validation study

Anke

Manskow

Friborg

et al. 2016

BMC Health Serv Res

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BackgroundFamily members are important for support and care of their close relative after severe traumas, and their experiences are vital health care quality indicators. The objective was to describe the development of the Family Experiences of in-hospital Care Questionnaire for family members of patients with severe Traumatic Brain Injury (FECQ-TBI), and to evaluate its psychometric properties and validity.MethodsThe design of the study is a Norwegian multicentre study inviting 171 family members. The questionnaire developmental process included a literature review, use of an existing instrument (the parent experience of paediatric care questionnaire), focus group with close family members, as well as expert group judgments. Items asking for family care experiences related to acute wards and rehabilitation were included. Several items of the paediatric care questionnaire were removed or the wording of the items was changed to comply with the present purpose. Questions covering experiences with the inpatient rehabilitation period, the discharge phase, the family experiences with hospital facilities, the transfer between departments and the economic needs of the family were added. The developed questionnaire was mailed to the participants. Exploratory factor analyses were used to examine scale structure, in addition to screening for data quality, and analyses of internal consistency and validity.ResultsThe questionnaire was returned by 122 (71%) of family members. Principal component analysis extracted six dimensions (eigenvalues > 1.0): acute organization and information (10 items), rehabilitation organization (13 items), rehabilitation information (6 items), discharge (4 items), hospital facilities-patients (4 items) and hospital facilities-family (2 items). Items related to the acute phase were comparable to items in the two dimensions of rehabilitation: organization and information. All six subscales had high Cronbach’s alpha coefficients >0.80. The construct validity was confirmed.ConclusionThe FECQ-TBI assesses important aspects of in-hospital care in the acute and rehabilitation phases, as seen from a family perspective. The psychometric properties and the construct validity of the questionnaire were good, hence supporting the use of the FECQ-TBI to assess quality of care in rehabilitation departments.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1884-6) contains supplementary material, which is available to authorized users.

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“…Familialism, or familismo, refers to Latinos' identity as part of a family, and Latinos' families and communities often provide significant support [22]. Norup and colleagues found that TBI caregivers in Mexico reported higher unmet needs for emotional support and instrumental support than caregivers in several other global regions, suggesting a high importance of and desire for family connection and support [23]. Similarly, Coy and associates found that the effect of TBI social impairments on caregiver burden in Mexico was lessened if caregivers reported strong family functioning [24].…”

Section: Introductionmentioning

confidence: 99%

A Multi-Site Study of Traumatic Brain Injury in Mexico and Colombia: Longitudinal Mediational and Cross-Lagged Models of Family Dynamics, Coping, and Health-Related Quality of Life

Cariello

Perrin

Rodríguez-Agudelo

et al. 2020

IJERPH

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Latin America has high rates of traumatic brain injury (TBI), yet reduced mental and physical health outcomes due to limited rehabilitation services. To understand the psychosocial adjustment process in TBI patients in Latin America, the incorporation of cultural values including family-based variables is imperative. The current study examined relations among healthy family dynamics, coping, and mental and physical health related quality of life (HRQL) among a sample of TBI patients across three sites and two countries over the first 4 months post-injury. A sample of 109 acute TBI patients from Mexico and Colombia were recruited, and a series of longitudinal mediation and cross-lag panel analyses were run. Mental and physical HRQL were positively associated with each other, as well as healthy family dynamics and coping. Coping partially mediated the effects of healthy family dynamics on both mental and physical HRQL. Family dynamics showed the strongest cross-lag relationships with coping going from 2 months to 4 months. Similarly, coping showed the strongest cross-lag relationships with both mental and physical HRQL going from baseline to 2 months. Results provide empirical support for the importance of a rehabilitation workforce that has been trained in and can effectively implement family-based interventions for individuals with TBI in Latin America.

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Family needs after brain injury: A cross cultural study

Cited by 39 publications

References 47 publications

Family members’ experience with in-hospital health care after severe traumatic brain injury: a national multicentre study

Family members’ experience with in-hospital health care after severe traumatic brain injury: a national multicentre study

The family experiences of in-hospital care questionnaire in severe traumatic brain injury (FECQ-TBI): a validation study

A Multi-Site Study of Traumatic Brain Injury in Mexico and Colombia: Longitudinal Mediational and Cross-Lagged Models of Family Dynamics, Coping, and Health-Related Quality of Life

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