The hidden helpers
The situation of family carers has recently been the national news in Norway. Hidden helpers – caregiving relatives – must become visible in order to prevent becoming patients themselves, and health policy rhetoric needs to be translated into action.
Most people will experience having a mother, father, spouse, child or other loved one who needs health support in their lifetime.
A Norwegian next-of-kin survey under the auspices of the Directorate of Health (2021) found that 36 per cent of people in Norway are considered next-of-kin when the term is understood in a broad sense.
We want to shed light on the situation of these “invisible” helpers that the health sector relies on. Family members provide extensive caregiving, which is important to highlight in the public space at a time when scarce resources can lead to all too many care tasks being transferred to relatives.
National next-of-kin survey
The Directorate of Health’s investigation shows that relatives have both positive and negative feelings connected to providing care for their next-of-kin. Many are happy to support, help and care for someone close to them, but at the same time they experience worry and negative feelings, such as stress and a bad conscience.
It was found that extensive family involvement can impact both work and education for the caregivers involved. Caregiving relatives reported lack of concentration, restlessness, stress, exhaustion, worry and interruptions as negative effects. Family carers may also find it difficult to maintain their social network, leisure activities and family relationships alongside their family caregiving responsibilities.
How relatives experience the role of carer of course varies greatly. For example, women more often experience shame and guilt. These feelings are more widespread among relatives of children and people with substance abuse and mental disorders.
Relatives of the chronically and seriously ill
A study published in the Norwegian public health journal Michael (2020) found that relatives of chronically and seriously ill patients are sometimes underrecognized in their role as relatives. The study is based on research related to COPD, cancer, heart and kidney disease.
Relatives of patients with cancer noted in some instances that they received a lot of information about the diagnosis and treatment early on, but felt inadequately informed about how the disease would develop.
Nursing tasks sometimes encroach on the closeness in the relationship between patients and their next-of-kin.
Relatives of patients with kidney disease often experienced that they were given responsibility for the patient complying with treatment, but at the same time felt forgotten, powerless and excluded. Family carers missed regular communication with health personnel.
One study found that women who were responsible for spouses with COPD experienced a reduced quality of life. The women wanted to provide care for their spouse but lacked support, information and respite.
Relatives of patients with heart failure felt that they lacked information and dialogue that would prepare them for the palliative phase. In contrast, they experienced care and emotional support when the palliative treatment started.
Dementia is also a major and growing social challenge that presents special challenges for relatives. Research shows that the disease has major consequences for the whole family and that making an early diagnosis is of great importance.
Researcher and nurse Anne-Sofie Egset points out that we especially need more knowledge about children who have parents with dementia.
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We have extensive knowledge from relatives that they experience shortcomings in their encounters with the health service in terms of taking care of the role of a relative through knowledge sharing, participation and support from health personnel.
Recent years have seen a growing recognition of the importance of health competence. According to the World Health Organization, health competence involves people’s ability to understand, assess and apply health information in order to make well-informed choices related to their own health.
The Norwegian Directorate of Health’s strategy to increase health literacy in the population emphasizes its importance in giving people the prerequisites needed to make good lifestyle choices, master their own illness and be able to contact the health services when necessary.
Strengthening patients’ and relatives’ health competence is mentioned as an area of focus in the strategy.
The next-of-kin situation has recently been a topic in Norwegian newspapers. Knut Olav Åmås, for example, wrote about “The invisible caregivers” in the 7 January issue of Aftenposten, Norway’s largest printed newspaper. He conveyed concern that carer relatives could end up as patients if they have to fend for themselves without support.
In order to prevent such a development, these hidden helpers must become visible, and health policy rhetoric needs to be translated into action. Family carers must be valued, provided with resources and strengthen their own health competence in order to be able to experience what Åmås conveys, that “The person who gave you life, now needs you in order to stay alive. That insight makes being the next-of-kin infinitely more meaningful.”
This Viewpoint was also published in the Ålesund newspaper Sunnmørsposten.