Formal and informal care after stroke: A longitudinal analysis of survivors’ post rehabilitation hospital discharge

Abstract

Aims To describe the type and the amount of formal and informal care received during the first year after home discharge and to identify the baseline predictors of the formal and informal care needs of stroke survivors. Design Longitudinal study. Data were collected between June 2013–May 2016. Methods Survivors (N = 415) were enrolled during discharge from rehabilitation hospitals and interviewed at 3 (T1), 6 (T2), 9 (T3), and 12 (T4) months. The linear mixed effects model with random intercept and random slopes was used to trend for the amount of formal and informal care received by survivors during the four observation times. Results Regarding formal care, only physiotherapy and speech therapy decreased significantly over time. Stroke survivors received a mean of 17 hr of paid informal care per week at T1 and these hours did not significantly decrease after one year from discharge, while unpaid informal care decreased significantly over time. Higher numbers of paid informal caregiving were predicted by older age, higher education levels, lower physical functioning, and living without unpaid informal caregivers while higher numbers of unpaid informal care were predicted by lower physical functioning and living with unpaid informal caregivers. Conclusions Stroke has a great effect on survivors’ lives. During the first few months after rehabilitation hospital discharge, survivors need further care because they are often discharged before achieving independent functioning. Impact The results of this study could be important to guide future interventions aimed at imporving stroke survivors' conditions after post rehabilitation hospital discharge.

Stroke disease‐specific quality of life trajectories after rehabilitation discharge and their sociodemographic and clinical associations: A longitudinal, multicentre study

“…With regard to the variables significantly associated with SIS physical dimensions, we observed that stroke survivors who were younger, with hypercholesterolaemia, and who had higher physical functioning (Barthel Index) at baseline had higher strength, more ability during ADL, and higher hand function. Literature (Pucciarelli, Ausili, et al, 2019) has shown that, in order to maintain physical functioning and physical abilities, stroke survivors need to do as much physical activity as the general population. Younger stroke survivors are usually more likely to comply with this advice than the older (Alawieh et al., 2018).…”

“…Approximately 90% of stroke survivors have compromised functions (Carvalho-Pinto & Faria, 2016), which make it difficult to perform their daily life activities. By causing physical, psychological, and social disabilities, which often demand several hours per day of formal and informal assistance (Pucciarelli, Ausili, et al, 2019), adding to the financial burden on survivors and their families (Pucciarelli et al, 2020), stroke decreases individuals' quality of life (QoL; Donkor, 2018). Multiple risk factors, including age, gender (Bushnell et al, 2014), dependency in activities of daily living (ADL; Kim et al, 2014), social support (Elloker & Rhoda, 2018), and depression (Pucciarelli et al, 2017), have been associated with poorer QoL in stroke survivors.…”

Socio-environmental predictive factors for discharge destination after inpatient rehabilitation in patients with stroke: a systematic review and meta-analysis

“…Marital status was also a significant factor for living at home up to two years after discharge [62,63], while social support was associated with community reintegration at three months postdischarge [64]. This indicates that the need for support exists beyond inpatient rehabilitation [65]. Additionally, the influence of ethnicity was assessed in the USA.…”

Acidente Vascular Cerebral: Qual o Impacto nos Cuidadores Informais?

“…2 A literatura é unanime em demonstrar que os sobreviventes apresentam inúmeras sequelas crónicas levando a uma diminuição na autonomia destes doentes e obrigando à presença de um cuidador para auxílio nas atividades de vida diária e na gestão das rotinas da vida após um AVC. 3 A solução mais frequente no apoio a estes doentes passa pela presença de um cuidador informal (CI) no domicílio que não tem formação no que diz respeito às sequelas de AVC ou dos cuidados necessários/adequados para estes doentes. 4 O CI é a pessoa da rede social do doente, não remunerada, com relação significativa (familiar, parceiro (a), amigo(a) e/ou vizinho(a)), que se assume como o principal responsável pela organização, assistência e/ou prestação de cuidados.…”