Goal 5 of the Sustainable Development Goals aims to eradicate all forms of violence and discrimination towards the women. It also addresses other key challenges such as poverty and education for girls. Family Caregiving is an interesting case where women's equality is both a question and an answer when it comes to family caregiving crisis. We need to remember that family caregiving does not refer solely to patients suffering from cancer or terminal illness but also applies to those individuals with severe intellectual and developmental disabilities such as cerebral palsy. Similarly to Alzheimer in adult care recipients, children with cognitive disorders require 24/7 assistance due to the their physical impairment and unpredictability of their behavior.
We are are unfortunately lacking sufficient evidence of the increased role of women in taking care of the children born with the above mentioned disabilities. The Hospice Foundation in Gdansk, Poland however reports that the vast majority of children suffering from lifetime cognitive disorders is raised by single women from the day there are born. On the contrary a typical American caregiver is a 46-year old woman, married or living with a partner. Naturally single caregivers experience more challenges than those living with a partner. From being unable to share one’s own emotions, experience and everyday responsibilities to the increased burden of physical care tasks such as dressing or bathing which require lifting of a care recipient (ADLs).
The social awareness campaign that has been released in Poland for a second year in a row and entitled: Family Caregiver - doesn’t have to be alone illustrates the non-glamorous yet truly heroic everyday reality of those family caregivers that need to tackle it on their own. Please watch it below.
According to the data published by United Nations in their Sustainable Development Goals Plan Report the proportion of time spent on unpaid and paid work between men and women varies significantly. In 59 countries worldwide 19 compared to 10% of unpaid work is executed by women. The data however does not specify what percentage of the above is the informal caregiving and whether it is included in the statistics at all. Another study showed that although men also provide assistance, female caregivers spend up to 50% more time providing care than male caregivers [Institute on Aging. (2016). Read How IOA Views Aging in America.] There is also a difference in the scope of responsibilities undertaken by each gender. Studies indicate that 36% of female caregivers in United States shoulder the majority of the most difficult caregiving tasks (i.e., bathing, toileting, and dressing) compared with 24% for their male counterparts, who are more likely to help with finances, arrangement of care, and other less burdensome tasks. [National Alliance for Caregiving and AARP. (2009). Caregiving in the U.S.]. The physical dimension of an everyday care provided by women increase the risk of health complications such as back pain, poorer immune function and elevated blood pressure.
Stress and the sudden change in the family functioning almost always lead to an overwhelming mental, emotional and financial burden but even more so to a serious medical conditions faced by the caregivers themselves. Changes in a way of thinking, handling one’s own emotions etc. can progress slowly and simultaneously with the next phases of the care recipient’s illness but can also turn very dramatic. Depending on the family structure, these feelings are shared among two or more family members but studies showed us that the majority of the emotional burden is handled solely by women. This again has its roots in the cultural perspective on women, their responsibilities, values and what is perceived as natural predispositions that too often are taken for granted. Women have always been seen as more compassionate, caring and vulnerable making it easy for the society to allocate them to various social role such as to care for the ill, elderly or disabled family members. While there is some progress in the way society starts to re-define masculinity and femininity and becomes more open and flexible in terms of diverse qualities both of the genders present, women still account for the vast majority of family caregivers worldwide.
The changing socio-economic reality in Poland, like in many other European countries, has weakened the ability of a family to take care of their loved ones. The nuclear family model combined with the rising unemployment, especially among young adults, often force people to emigrate in the pursuit of the better standard of living, higher salaries and the quality of life in general. The other side of the equation is the migration of health personnel like doctors and nurses from developing to developed countries which brings yet another dimension to an already complex public health concern. The average life expectancy is increasing but at the same time the decreasing birth rate is not able to fill in the gap between the generations. Adding to this is the prevailing social expectations in many countries that put a family member at the center of caregiving which is considered not just a moral choice but an obligation and responsibility that lie primarily in the hands of the family. Paradoxically, support comes only with the need of social intervention when these duties are being heavily neglected by the family and the decision is made to relocate the care recipient into the institution. In other cases and from the perspective of the community politics, family is a cheap, or even free, workforce helping to alleviate the burden of the chronically and terminally ill to the already weak healthcare system.
From the unpaid leave, to reduce tax council to finally a reliable financial support and insurance for those taking care of their loved ones, the government has a plethora of ways to respond to a global crisis of family caregiving and reduce the economic pressure faced by informal caregivers. Some countries like Belgium or France provide long leaves of one or more years for the care of terminally ill family members with others allowing only up to three month in English speaking countries and the Netherlands. This condition may be however a subject to discrimination in the workplace and may as well as be refused by employers on business grounds. Taking as an example Poland and Great Britain, the financial support, or perhaps lack of it, available to individuals involved in long term care of their loved ones is often regulated by simply illogical conditions. In order to receive nursing benefits a family caregiver must either resign from his current employment completely (Poland) or their salary cannot exceed roughly 100£ a week (Great Britain). In Poland received nursing benefit for those those who are eligible in the light of law is equal to a minimal national wage: 1300 PLN and roughly $355. Even without deeper understanding of the socio-economic situation in these countries and the ratio of living cost to wages, it is blatantly clear that both figures are far from being sufficient to sustain living of two individuals, one of whom requiring expensive medical assistance including medicines and equipment. More than being an outrageous fact, the above mentioned should be interpreted as an unacceptable violation of basic human rights. SDG 3 seeks to ensure universal access to affordable and effective medicines as well as increased health financing. What was discussed in the previous blog post diverges heavily from these objectives and poses a threat to human dignity and equal rights.
It is worth noticing that the two terms which are widely used in the discussion and research literature regarding the care of chronically ill and elderly, namely “family caregiver” and “informal caregiver” are not mutually exclusive but are also not the same. There is lack of agreement among the researchers, policy makers and social service providers regarding their meaning. “Family caregiver” indicates that the person taking care of the care recipient has some sort of formal attachment such as being a wife, husband, child or a parent of the recipient. “Informal caregiver” on the other hand carries more broad meaning and can refer to anyone showing some kind of personal relationship with the patients. Friends, neighbors, volunteers or community workers usually fall into this category. The common denominator however is the fact of the unpaid care given by the both groups.
Professional, often private, care and nursing is often regulated by the government and is therefore known as formal. This differentiation is not only vital in the source literature terminology but even more importantly in how it corresponds to a data available of the two respective groups: formal and informal. In the latter the data is scarce and we are usually presented only with the estimates of the family caregiving scale worldwide. This gap in the data is on one hand caused by the challenging nature of data collection in this particular area, like the measurement of the level of commitment or affiliation, and on the other bay the lack of adequate engagement and advocacy of the governments for the social issue that can potentially expose the inefficiencies of the national healthcare system and serious negligence of its citizens and consequently violation of human rights.
In recent years there have been couple of attempts to identify the level of burden on the family caregivers side. One of the more significant studies - EUROFAMCARE which was an international research project funded within the 5th Framework Programme of the European Community and conducted in Poland between 2003-2004 has enabled us to estimate the number of informal caregivers in Poland to around 2 million. In America this figure is as high as 44 million people providing 37 billion hours of an unpaid care each year. This makes up 75% of all caregiving support provided in the United States and at least $375 billion savings if this care was given as regular paid services.
Informal caregivers are typically family members of the individuals in need of chronic or life-long care. They support their loved ones in everyday activities, known as ADLs, such as bathing, dressing, toileting and in that start living a dual life - one of the care recipient and one of themselves, yet conditioned and altered by its alter existence. This dual living generates a great emotional, mental and often also physical burden for the caregivers. As teenagers or young adults we look for ways to quickly move out from parents home and start living on our own. As flatmates or roommates we find it hard to seek for compromises and share our space with others. Finally as boyfriends, girlfriends, partners we are terrified by the idea of losing our own independence and start co-living with a loved one permanently. We all need our space, our freedom and independence. It is universal need for every single human, yet immensely discredited and ignored when it is not our reality we are referring to. It is not surprising that when faced with the illness of our loved one we re-value our needs and priorities. What is shocking however is the lack of understanding from others, in particular politicians and policy makers of the extremely difficult conditions, the reality we begin to learn to live in and the new need of our own; the one to be noticed.