Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home – study protocol for a web-based intervention

Abstract

Background: Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. Methods: The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a webbased intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points.

Predictive model for the preparedness level of the family caregiver

“…It is common for caregivers to request information from nurses. Nursing interventions are known to be effective, and information provided by nurses can have significant positive effects on family caregivers' feelings of readiness (Alvariza et al, 2020;Henriksson, Årestedt, et al, 2012;Holm et al, 2016).…”

“…It is common for caregivers to request information from nurses. Nursing interventions are known to be effective, and information provided by nurses can have significant positive effects on family caregivers' feelings of readiness (Alvariza et al, 2020; Henriksson, Årestedt, et al, 2012; Holm et al, 2016). Therefore, an updated model focusing on caregiver preparedness is required to predict the preparedness of family caregivers, anticipate their need for training activities and avoid negative caregiving effects.…”

Challenges of caregivers providing care to children with disabilities at non-governmental organisations in Tshwane townships, South Africa

“…The results of the current study are also consistent with a study by Burgdorf et al ( 2019 :835), published in the JAMA Internal Medicine Journal , which revealed that more than three-quarters of caregivers are actively performing their caregiving roles without having undergone any training. A positive first impression is one of the factors that determine caregiver preparedness (Alvariza, Häger-Tibell & Holmet 2020 ). Caregiver preparedness is described as the perceived readiness of caregivers to undertake the caregiving role that includes the provision of physical and emotional support to those in need (Schumacher et al 2008 ).…”

Building Bridges for “Palliative Care-in-Place”: Development of a mHealth Intervention for Informal Home Care

“…The informative texts will deepen and broaden the topics raised in the videos. As a part of the intervention, the website will also host an online peer-support discussion forum, which can be used by ICs to communicate with others in a similar situation (Alvariza et al, 2020).…”