To manage a complex dependency: The experience of caregiving after a fall

Aim: To understand the experience of family members of an older relative who has had a fall which required medical attention. Background: There is abundant bibliography in caregiving, but little is known about the problems faced by caregivers and how family members cope when their older relative has a fall. Design: Qualitative study that used a symbolic interactionism perspective. Methods: Twenty‐two people with older relatives, who had had a fall and contacted health services in Spain, participated in the study. Data were obtained via written accounts, focus groups, and semi‐structured interviews between February 2014 ‐ December 2015. Analysis was guided by grounded theory procedures. Results: With the fall, dependency becomes a complex issue for the family. To manage a complex dependency is the core issue that emerges from the data analysis. It depicts family efforts to assist their relative in gaining autonomy after a fall, in the best conditions they can provide. They do this with little guidance and support from healthcare professionals. Conclusions: Guides and protocols for the care of a fragile older person, particularly after a fall, should not only include care but also support to caregivers. Health professionals and especially nurses need to be aware and respond to the family caregivers needs after a fall. To the fall prevention initiatives already in place, it must be added that those who support family members to cope with the care of an older person who has had a fall.Authors receive funds to conduct this research from the Nursing Scientific Association of Spain (SCELE), Charo Palencia Grant

"Feeling tranquil": the experience of rest among the caregivers’ of relatives with advanced dementia

Objetivo: Comprender la experiencia de descanso de las cuidadoras. Método: Estudio cualitativo guiado por los procedimientos de la teoría fundamentada que forma parte de otro más amplio sobre el alivio del peso del cuidado en situaciones de vulnerabilidad. En el estudio participaron 17 cuidadoras de familiares con demencia avanzada que fueron seleccionas con propósito. Los datos se recolectaron por medio de 17 entrevistas semi estructuradas. El análisis de datos se hizo basado en los procedimientos de la teoría fundamentada. Resultados: Las cuidadoras no descansan como antes lo hacían, el descanso de ahora es incompleto y depende del bienestar del familiar enfermo. La tranquilidad emerge en el estudio como el elemento central de esta nueva experiencia de descanso. Descansar ahora es una experiencia interpretada y que conlleva un trabajo de organización y emocional. Las cuidadoras crean, y pactan condiciones que les proporcione tranquilidad para poder descansar. Conclusiones: El presente estudio profundiza en la experiencia de aliviar del peso del cuidado y destaca la connotación moral presente en el cuidado familiar. Conocer como descansan las cuidadoras y que es lo que subjetivamente les proporciona descanso, no sólo contribuirá a que los profesionales de la salud lo promuevan y apoyen, sino también evitará culpabilizarlas por no querer o poder descansar. Los servicios de apoyo han de considerara el cambio que ha tenido para las cuidadoras la experiencia del descanso en sus vidas.Objective. To understand caregiver’s experience of rest. Method. Qualitative study guided by grounded theory procedures and part of a wider study about burden relief in vulnerable situations. 17 women family caregivers of patients with advanced dementia were purposely sampled. Data was collected with 17 semi structured interviews and analyzed following grounded theory procedures. Findings. Caregivers do not rest as before, now rest is incomplete and depend on the well being of their sick relative. Tranquillity emerged in the study as the central element of this new experience of rest. To rest now is an interpreted experience that implies an organizational and emotional work. Caregivers create and negotiate conditions that will provide the tranquillity to be able to rest. Conclusion. The present study deepens in the experience of relief of the burden of care and highlights the moral connotation present in family care. To know how caregivers rest and what subjectively gives them rest, will not only contribute to health care professionals to support and promoted it, but also will avoid to blame them for not being able or wanting to rest. The meaning of what is rest has changed as the lives of caregivers, Support services ought to consider the change that the experience of relief has taken place in caregivers lives.Financiación total del Fondo de Investigación en Salud, Programa de Promoción de la Investigación Biomédica y en Ciencias de la Salud, Ministerio de Sanidad y Consumo, PI060005

The legitimacy of rest: conditions for the relief of burden in advanced dementia care-giving

Aim. This paper is a report of a study conducted to identify the conditions that favour the relief of the burden of female caregivers of relatives with advanced dementia. Background. Respite services are a response to caregivers’ needs for rest. Although they are wanted and needed services, caregivers do not always have access to or use them. The need for a caregiver-centred approach to relieving the burden of care is a conclusion which respite researchers are increasingly reaching. Method. Grounded theory was chosen as the research strategy. Twenty-two female primary caregivers of relatives with advanced dementia participated in semi-structured interviews between November 2006 and May 2008 in Spain. Data collection was guided by the emergent analysis and ceased when no more relevant variations in the categories were found. Findings. While having a rest is legislated as a right in civil and religious laws in family care in Spain, it should meet certain conditions that in the caregiver’s eyes legitimate it. In the present study these were: (i) when there is no abandonment, (ii) when others are not harmed, (iii) when having a rest is obligatory and (iv) when having a rest is acknowledged. Conclusion. Many caregivers experience ambivalence over accepting respite. Nurses should assess caregivers’ situations and promote context-specific interventions and a relief of burden free from guilt. Exploration of the conditions that favour the relief of burden within other cultural and caregiver groups is recommended.The study was funded by the Health Research Found, Programme of Biomedical and Health Sciences Research Promotion. Ministry of Health and Consumer affairs. PI 060005