Authors: Hana Convoy, mySupport study Strategic Guiding Council and Karolína Vlčková, Center for Palliative Care, Czech Republic
Date of publication: August 2021
Keywords: Dementia, Nursing home, Communication, Trust
The main goal of mySupport study is to help family carers of people with advanced dementia who live in nursing homes and provide them with information about palliative care. A key element of this study is to build capacity among staff on how to communicate effectively with family carers which is necessary for the creation of trust between family carers and staff (Lynn-sMcHale, & Deatrick, 2000).
An important part of this study is the international public patient involvement panel known as Strategic Guiding Council, which consists of family carers who have experience with dementia and nursing homes. One of the panel members – Hana Convoy is describing in this blog her experience of communication with nursing home staff:
Choosing nursing home care
The decision to solve the impact of my mother’s disease on her life and our family life through placing her in a nursing home was quite difficult and painful and there was a long way to it. I had been hesitating about making this decision for at least three years. I had tried to enable my mother to live at home as long as possible and I had taken care of her with the help of my daughter and home care services.
Being aware of the gradual progression of my mother’s illness (Alzheimer’s disease), I had been also looking for a nursing home in which there would be as much of a home environment as possible, and whose staff would have the warmest and most humane approach to clients. It was a really difficult but finally successful task.
The need for freedom to ask questions
During the initial visit to this nursing home, I suffered from great uncertainty and doubt about this way of dealing with the situation, I wondered if I had failed, and I experienced anxiety and guilt. To be sure and calm down, I asked the social worker, who was in charge of the initial visit, several questions, and I tried to find out as many details as possible about the care provided. It seemed that the social worker was not used to experiencing such a whirlwind of questions. She was experiencing them as a hurt and was interpreting them as my distrust of the competence of the facility staff. From my perspective it seemed she became irritated and impatient, and it felt that she responded mockingly to some of my questions. I felt it was an unpleasant moment of mutual misunderstanding.
However, I liked the nursing home and the services provided by them, so I did not let myself be discouraged. I applied for admission and my mother got on the waiting list. Her health continued to deteriorate, but I still thought I should be stronger, more capable, more efficient, and braver and secure her life at home. In the end, the circumstances forced me to make a decision as my mothers’ health deteriorated over the next five months.
From the above, it is clear that I had suffered from several negative feelings regarding the relocation of my family member to the nursing home long before this happened. Whether it was feelings of guilt, inadequacy, failure, insecurity or fear, I needed reassurance that my experience was normal and that it was natural to ask and want to know. I had never had to deal with such a situation before, I had never visited such a facility.
The importance of first impressions
From the initial visit, I gained the experience that it was better to not ask too many questions because it was seen as distrustful and suspicious and negatively influenced the contact with the staff of the nursing home. I missed a sense of belonging, a feeling that we were ´on the same ship´ and that both sides wanted the same thing, that was, ensuring optimal care for a seriously ill old person.
Now my mother has been a resident of a nursing home for 11 months and she is still in the phase of a difficult adaptation to this new environment. My daughter and I try to visit her as often as possible, even several times a week.
Communication challenges throughout the pandemic
I found communication with the nursing home staff very difficult throughout the Covid-19 pandemic, particularly during which time family visits were prohibited. When I contacted the facility, I received quite a bit of information about my mother’s condition and her well-being. However, again I felt inappropriate, as if by asking I questioned the care provided and that I did not trust the competence of the staff. I felt like I was being told something like ´Don’t worry, we understand it better, we know what we’re doing, leave it to us´. The nursing home once actively and spontaneously contacted me by phone to inform me that my mother’s health deteriorated. During this call, I was negatively surprised because the staff asked me if they should call an ambulance for my mother. At that time, I had not talked to my mother for several days and I had not visited her for several months so I was not able to responsibly assess what was the best option for her at that moment. Besides this communication, I received only a few emails, which were sent to all family members and concerned with the announcement of a ban on visits or of the need to test visitors on Covid-19 and of the vaccination of residents. Therefore, it is obvious that communication between family members and staff of the nursing home (and vice versa) has significant gaps.
Hana´s experience which is described above confirmed the importance of trust and open communication between family carers and staff from the nursing home which is based on, mutual respect, understanding and setting expectations (Boogard et al., 2017; Lynn-sMcHale, & Deatrick, 2000). As long as family members feel inhibitions, doubts, shame, and fear to ask, and as long as the staff of nursing homes internally reject family members´ questions and interpret them as inappropriate curiosity, interference in internal affairs and distrust of their competence, the gap will inevitably persist and divide these groups into two hostile sides. But at the same time, both sides are together ´on the same ship´ and they care about those who can no longer do it without help. Building trust is a process which needs some time, opportunities for interactions and respect for different views on care (Lynn-sMcHale, & Deatrick, 2000). Hopefully, mySupport study and the intervention will help with this process in nursing homes. So, let’s go together and overcome these barriers, let’s sail together!
Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia. Geriatrics & gerontology international, 17(12), 2466-2471.
Boogaard, J. A., Werner, P., Zisberg, A., & van der Steen, J. T. (2017).
Lynn-sMcHale, D. J., & Deatrick, J. A. (2000). Trust between family and health care provider. Journal of family Nursing, 6(3), 210-230.
Meet the authors
Karolína Vlčková, Research fellow, Centre for Palliative, Czech Republic, mySupport study Research Team
Karolína Vlčková MSc., is a research fellow in the Centre for Palliative Care in Prague. She is doing PhD at First Faculty of Medicine at Charles University on the topic Prognostic Awareness in Patients with Advanced Cancer. She is also Assistant Professor of Medical Psychology at Third Faculty of Medicine at Charles University in Prague. She worked on several studies on neuropsychological assessment of dementia in the National Institute for Mental Health and participated in the project on reminiscence therapy which involved people with dementia and their caregivers
Hana Convoy, Strategic Guiding Council member, family carer, Czech Republic
Hana Convoy MSc., is a Clinical Psychologist and Psychotherapist, she works under the contracts with Health Insurance Companies in a private practice in Roudnice nad Labem, Czech Republic. She is a daughter of a mother who suffers from Alzheimer’s disease and lives in a long-term care home. Hana’s motivation for participating in long-term care research is her experience as a family carer. She hopes her contributions will help to improve end of life care within long-term care homes for residents and their families. Hana wishes to share her knowledge and experience caring for a family member suffering from dementia.