Interventions for supporting informal caregivers of patients in the terminal phase of a disease

 

Abstract

Background

Patients in the terminal phase of a disease may have complex needs. It is often family and friends who play a central role in providing support, despite health professional input and regardless of whether the patient is at home or elsewhere. Such informal caring may involve considerable physical, psychological, and economic stresses. A range of supportive programmes for caregivers is being developed including psychological support and practical assistance.

Objectives

To assess the effects of supportive interventions that aim to improve the psychological and physical health of informal caregivers of patients in the terminal phase of their illness.

Search strategy

We searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, Issue 2 2010); MEDLINE (1950 to May 2010); EMBASE (1980 to May 2010); PsycINFO (1872 to May 2010); CINAHL (1937 to May 2010); National Health Service Research Register (2000 to November 2008) and Dissertation Abstracts (1716 to May 2010). We searched the reference lists of relevant studies; contacted experts; and handsearched journals.

Selection criteria

Randomised controlled trials (RCTs) of interventions to support adults who were caring for a friend or relative with a disease in the terminal phase. Interventions could include practical and emotional support and/or the facilitation of coping skills. Interventions could support caregivers indirectly via patient care.

Data collection and analysis

Two authors independently screened citations against the selection criteria. Data were extracted by one author and checked by another. This included extraction of any adverse effects. Risk of bias assessment was undertaken by two authors. We contacted trial authors to obtain missing information. Trial data were combined, where appropriate, on the review's primary outcomes.

Main results

We included eleven RCTs involving 1836 caregiver participants. Nine interventions were delivered directly to the caregiver. Seven of these provided support in the caring role, another involved a family life review, and one grief therapy. None provided practical support. The other two interventions aimed to support caregivers indirectly via patient care. Overall the risk of bias is unclear, as all trials under-reported methods.

There is low quality evidence that interventions directly supporting the caregiver significantly reduce psychological distress in the short term (8 trials: standardised mean difference (SMD) -0.15; 95% confidence interval (CI) -0.28 to -0.02). There is also low quality evidence that these interventions in the short term may marginally improve coping skills and quality of life, but neither results were statistically significant (7 trials: SMD -0.05; 95% CI -0.24 to 0.14; 6 trials: SMD 0.08; 95% CI -0.11 to 0.26, respectively). One study assessed physical outcomes, specifically sleep improvement, and found no difference (median effect 0.00). No study measured health service use or adverse outcomes. In one study, however, a subgroup of intervention participants had higher levels of family conflict.

Evidence was less clear on the indirect interventions. While both trials in this category found that supporting the patient may reduce psychological distress, none of the four assessments were statistically significant. There were no evaluations of coping with the caring role, quality of life, service use or adverse outcomes. In one trial there was no difference between trial arms in the proportion of caregivers reporting good physical health.

Authors' conclusions

There is evidence that supportive interventions may help reduce caregivers' psychological distress. These findings suggest that practitioners should enquire about the concerns of caregivers and should consider that they may benefit from additional support. There is, however, a need for further research to explore the benefits identified, and to assess the interventions' effects on physical health, and potential harms. Trials need to report their methods fully.

 

Plain language summary

Interventions for supporting family and friends of patients at the end of life

Family and friends are often central to the care of patients at the end of life. While providing such informal care can generate strong positive emotions, caring can be extremely stressful both mentally and physically. Support strategies are being developed. These can involve, for example, advice on caring and practical support. However, it is unclear if these strategies are beneficial.

We conducted our review through searches for studies that were randomised controlled trials and that evaluated an intervention to support family and/or friends of patients at the end of life.

We found 11 trials involving 1836 caregiver participants in total. The trials commonly evaluated an intervention that provided emotional support and advice on coping. Two studies aimed to help support the family and friends indirectly by addressing the needs of the patient. Apart from one trial providing patient care, none provided practical support. Trials compared those who received the intervention with those who did not, to see if the intervention helped the family, family member or friend cope with their caring role. Trials commonly evaluated the intervention by measuring whether it improved the caregiver's general wellbeing.

The review found that interventions that directly support the family and/or friends help them to cope emotionally, and may help them to cope with their role in caring and improve their quality of life. There were few assessments of the impact of the interventions on physical health; one study found overall no difference in sleep improvement. No study looked at whether the interventions increased or decreased the carers' health service use or looked for potential harms, although higher levels of family conflict was identified in some participants in one trial. Interventions that aimed to help support the family and/or friends indirectly via patient care, may also help them cope emotionally. There were no assessments on whether the indirect interventions helped them cope with their role in caring, improved quality of life, increased or decreased their health service use, or had potential harms. In one of these trials there was no difference in caregiver physical health between those whose friend or relative had received the additional patient care, and those who had not. The findings of some studies included in this review may be at risk of bias, because they under-report key design features and may have been conducted poorly.

 

Resumen

Antecedentes

Intervenciones para el apoyo de los cuidadores no profesionales de pacientes en la fase terminal de su enfermedad

Los pacientes en la fase terminal de una enfermedad pueden tener necesidades complejas. A menudo son la familia y los amigos los que desempeñan una función fundamental al prestar apoyo, a pesar del aporte de los profesionales de la salud y de forma independiente de si el paciente se encuentra en el domicilio o en otro lugar. Dicho cuidado no profesional puede incluir un estrés físico, psicológico y económico considerable. Se está desarrollando una diversidad de programas de apoyo para los cuidadores incluido el apoyo psicológico y la asistencia práctica.

Objetivos

Evaluar los efectos de las intervenciones de apoyo centradas en la mejoría de la salud psicológica y física de los cuidadores no profesionales de los pacientes en la fase terminal de su enfermedad.

Estrategia de búsqueda

Se realizaron búsquedas en el Registro Cochrane Central de Ensayos Controlados (Cochrane Central Register of Controlled Trials), (CENTRAL, The Cochrane Library, número 2, 2010); MEDLINE (1950 hasta mayo 2010); EMBASE (1980 hasta mayo 2010); PsycINFO (1872 hasta mayo 2010); CINAHL (1937 hasta mayo 2010); National Health Service Research Register (2000 hasta noviembre 2008) y en Dissertation Abstracts (1716 hasta mayo 2010). Se hicieron búsquedas en las listas de referencias de los estudios pertinentes; se contactó con expertos; y se hicieron búsquedas manuales de revistas.

Criterios de selección

Ensayos controlados aleatorios (ECA) de intervenciones para apoyar a los adultos que estaban cuidando a un amigo o familiar con una enfermedad en la fase terminal. Las intervenciones podían incluir apoyo práctico y emocional o la facilitación de las habilidades de afrontamiento. Las intervenciones podían apoyar a los cuidadores indirectamente mediante la atención del paciente.

Obtención y análisis de los datos

Dos revisores analizaron las citas según los criterios de selección de forma independiente. Un autor extrajo los datos y otro los verificó. Este procedimiento incluyó la extracción de cualquier efecto adverso. El riesgo de evaluación de sesgo fue realizado por dos autores. Se estableció contacto con los autores de los ensayos para obtener la información que faltaba. Los datos de los ensayos se combinaron, de ser apropiado, en los resultados primarios de la revisión.

Resultados principales

Se incluyeron once ECA que incluyeron a 1836 participantes cuidadores. Nueve intervenciones se administraron directamente al cuidador. Siete de las mismas proporcionaron apoyo en la función de cuidador, otra incluyó una revisión de la vida familiar, y una la terapia de la aflicción. Ninguno proporcionó apoyo práctico. Las otras dos intervenciones procuraron apoyar a los cuidadores indirectamente mediante la atención del paciente. En general, el riesgo de sesgo es incierto, debido a que todos los ensayos informaron los métodos de forma incompleta.

Hay pruebas de baja calidad de que las intervenciones que apoyan directamente al cuidador reducen significativamente los trastornos psicológicos a corto plazo (ocho ensayos: diferencia de medias estandarizada [DME] −0,15; intervalo de confianza [IC] del 95%: −0,28 a −0,02). También hay pruebas de baja calidad de que estas intervenciones a corto plazo pueden mejorar levemente las habilidades de afrontamiento y la calidad de vida, aunque ningún resultado fue estadísticamente significativo (siete ensayos: DME −0,05; IC del 95%: −0,24 a 0,14; seis ensayos: DME 0,08; IC del 95%: −0,11 a 0,26; respectivamente). Un estudio evaluó los resultados físicos, específicamente la mejoría del reposo, y no encontró ninguna diferencia (efecto mediano 0,00). Ningún estudio midió el uso de los servicios sanitarios o los resultados adversos. En un estudio, sin embargo, un subgrupo de participantes de la intervención presentó niveles mayores de conflicto familiar.

Las pruebas fueron menos claras en las intervenciones indirectas. Aunque los dos ensayos en esta categoría encontraron que el apoyo del paciente puede reducir los trastornos psicológicos, ninguna de las cuatro evaluaciones fue estadísticamente significativa. No hubo ninguna evaluación del afrontamiento de la función de cuidador, la calidad de vida, el uso de servicios o los resultados adversos. En un ensayo, no hubo diferencias entre los brazos del ensayo en cuanto a la proporción de cuidadores que informó una buena salud física.

Conclusiones de los autores

Hay pruebas de que las intervenciones de apoyo pueden ayudar a reducir los trastornos psicológicos de los cuidadores. Estos hallazgos indican que los profesionales deben indagar acerca de las inquietudes de los cuidadores y deben considerar que pueden beneficiarse con el apoyo adicional. Sin embargo, se necesita más investigación para explorar los beneficios identificados, y para evaluar los efectos de las intervenciones sobre la salud física y los daños potenciales. Los ensayos deben informar sus métodos de forma completa.

Traducción

Traducción realizada por el Centro Cochrane Iberoamericano