Carers' Experiences, Needs, and Preferences During Inpatient Stroke Rehabilitation: A Systematic Review of Qualitative Studies

Abstract

This systematic review provides new insights into the experiences, needs, and preferences of carers of stroke survivors undergoing inpatient rehabilitation. Carers experienced distress as they navigated a foreign culture and environment without adequate communication and processes in place for their inclusion. We recommend deliberate efforts to provide a more inclusive environment that better supports and prepares carers for their new role.

Rehabilitation environments: Service users’ perspective

“…Other studies also support the importance of providing opportunities for independent activities as a way of increasing patient control and promoting feelings of positivity and well‐being . Similar to this current study, another qualitative systematic review reported carers’ distress as they “navigated a foreign culture and environment” and the importance of providing a more inclusive milieu as they prepared to assume a caregiver or supportive role …”

Health professionals’ perspectives on the discharge process and continuity of care for stroke survivors discharged home in regional Australia: A qualitative, descriptive study

“…They also highlight the significance and complexity of the carer role during transitions between services and in maintaining continuity of care (Ghazzawi et al, 2016;Hvalvik & Reierson, 2015), and associated difficulty for carers when stroke survivors are discharged home. Carers need support (King et al, 2010), particularly with medications (Pindus et al, 2018), as they coordinate services and provide the stroke survivor with instrumental and emotional support (Aziz et al, 2016;Luker et al, 2017). .…”

“…They adopt responsibility for managing and coordinating care after the stroke patient is discharged, and frequently feel inadequately prepared to undertake this role (Aziz, Pindus, Mullis, Walter, & Mant, 2016). They need to be included in planning and training for discharge (Pindus et al, 2018), and require resources to initiate services, manage finances, adapt to changes in their relationship with the stroke survivor, and develop coping strategies to adapt to this sudden change in their lives (Luker et al, 2017). In addition, carers need information about stroke associations, support groups, home services, and available community facilities (Pindus et al, 2018).…”

“…The impact of discontinuity on service delivery can result in delayed recovery and readmission to hospital (Naylor & Keating, 2008); carers might feel unsupported and that it is necessary for them to take responsibility to compensate for inadequacies in the health system (Hvalvik & Reierson, 2015). Previous studies about discontinuity in transitional care have been focused on older people (Cheen et al, 2017;Grealish et al, 2017;Hvalvik & Reierson, 2015) and people with dementia (Kable et al, 2015) or diminished cognition (Groene et al, 2012), carers of stroke survivors (King et al, 2010;Luker et al, 2017;Pindus et al, 2018), and general hospital admissions (Ziaeian, Araujo, Van Ness, & Horwitz, 2012). These studies have been conducted in Australia, Singapore, Norway, the USA, and Spain (participating in the HANDOVER project) (Groene et al, 2012), and results might be relevant to other similar health-care systems.…”

Control temprano de los factores de mal pronóstico en el abordaje de los pacientes con eventos cerebrovasculares isquémicos

“…La rehabilitación implica un proceso multidisciplinario que gira en torno al paciente, pero que debe contar con la presencia de médicos, enfermeras, fisioterapeutas, trabajadores sociales, terapistas del lenguaje y terapistas ocupacionales, además de los cuidadores en casa que se convierten en el eje fundamental del proceso, pues los familiares son quienes pasan más tiempo con el paciente (51); por esto, es esencial coordinar encuentros desde el primer momento entre el grupo de especialistas y la familia, donde se les instruya y se les entrene en todo lo relacionado con las estrategias a implementar, ya que es claro que, cuando una persona sufre un ECV, esto no solo cambia su vida, sino también la de todos aquellos que la rodean (52,54).…”