Make Family Caregivers Visible, Valued, and Supported: An Interview with Patients’ Caregivers’ Advocate

Mrs. Rachel Ledany, founder and CEO of “Caregivers Israel,” is a passionate social entrepreneur. Rachel transformed her own private life-changing experience as a caregiver for her husband into a nonprofit organization, placing Israeli caregivers at the top of the agenda.

“Caregivers Israel” (CGI), established in 2014, is committed to raising public awareness of the caregiving phenomenon and its personal, social, and national impacts. Rachel’s work with CGI has developed impactful cross-sectorial relationships that yielded the establishment of policies for caregivers in the workplace, promoted research and academic involvement, and established an online support and counseling center supporting thousands of family caregivers.

Moreover, an engaged and influential caregivers’ community was established and developed in Israel. During the COVID-19 crisis, the dedication of CGI and the community has led to unprecedented support being provided for thousands of caregivers in Israel through digital tools. Rachel has qualifications in psychology and organizational counseling. “Caregivers Israel” is a full member of IACO (International Alliance of Carer Organizations) and a partner organization of Entwine-Informal Care.

Dr. Pia Raanani, MD, is a full professor in hematology at the Sackler School of Medicine, Tel-Aviv University, Israel. She has been the head of the Division of Hematology and Hemato-Oncology at the Rabin Medical Center, Petah-Tikva, Israel since 2013. Her primary field of interest is hemato-oncology, particularly leukemias and lymphomas. She is the medical advisor of the Israeli CML advocate group. Dr. Raanani trained in hematology at the Sheba Medical Center and completed a fellowship in CML at the Hammersmith Hospital, Royal Postgraduate Medical School in London. In 2007, she established the Hemato-Oncology Hospitalization Unit at the Davidoff Cancer Center, Rabin Medical Center and headed it until 2018. Dr. Raanani is active in the academic life of Tel-Aviv University (TAU): she is a member of several committees, a member of the Senate Committee of the TAU, was the head of the Department of Hematology of the Faculty of Medicine between 2010 and 2014, and has been the head of the Research Funds Committee of the Sackler School of Medicine since 2014. Dr. Raanani is on the editorial boards of several international hematology journals and a member of the Editorial Board of the Cochrane Collaboration. She is a member of the Israeli Society of Hematology as well as the European Hematology Association and the American Society of Hematology. Since 2015, she has served as an ambassador for Israel of the MD Anderson Society of Hematologic Oncology (SOHO). Dr. Raanani has been in the Steering Committee and has chaired several international scientific meetings in recent years in the field of hemato-oncology. She is the coauthor of more than 250 articles as well as chapters in books. Since July 2017, she has been an editor-in-Chief of Acta Haematologica.

Many people will need support and help with their daily functioning during their adult life. This need might or might not follow a physical or mental illness. Patient dependency can be short-term (for example, following a bone fracture) or of long-term nature (caused by a chronic illness such as a neurological or a hematological disease).

The solution to this need for support might be either by using a formal or an informal care and support system. Formal care is usually provided by trained and certified professionals who are paid for their work, while informal care is delivered by nonprofessionals (usually family members) who are not paid for their duty.

Data show that most help and assistance is actually provided by informal support systems such as family members or other relatives, defined as the caregivers. Their role as caregivers is manifested by providing personal care, supervision, and help with minor medical procedures (such as home injections) and by escorting the patient to medical visits and treatments. Caregivers of the elderly and sick sometimes take upon themselves missions that were previously in the professional domain only [1].

Moreover, with the ongoing trend for prolonged survival, caregivers also deal with end-of-life issues at home. Thus, in many aspects, the care provided by family members and relatives has become more complex and requires understanding, knowledge, and skills in a wide variety of fields, much more than in the past. In this interview, we try to shed light on the place and role of the caregiver, sometimes an invisible major player in the patient’s journey.

Mrs. Rachel Ledany: Worldwide, family caregiver/carer is defined as an unpaid individual, such as a family member, neighbor, friend, or other significant individual, who takes on a caring role to support someone with a physical disability, a debilitating cognitive condition, or a chronic life-limiting illness [2]. According to studies conducted in the USA in 2020, more than 1 in 5 Americans (21.3%) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53 million adults [3]. The average duration of caregiving is 4.5 years and, on average, caregivers spend 23.7 h per week providing care. Three in 5 caregivers are women (61%) and 2 in 5 are men (39%). On average, caregivers of adults are 49.4 years old.

More than half of caregivers felt that they had no choice in taking on this role; those were found to face more complex care situations and increased stress and strain. Most caregivers of adults care for a relative (89%), typically a parent or parent-in-law (50%), spouse or partner (12%), grandparent or grandparent-in-law (8%), or adult child (6%). Six in 10 caregivers report working while caregiving, most of them report going late to work, leaving early, or taking time off to accommodate care (53%). Nearly, one in four caregivers states that it is difficult for them to take care of their own health.

Mrs. Rachel Ledany: The roles of family members can be divided into five categories:

• Help at home – help with daily functions such as bathing, food preparation, feeding, household management (cleaning, payments), and medical procedures (giving injections, changing a bag of excrement).

• Escorting outside home – making an appointment with the family doctor, purchasing medication, transportation, and escorting to medical services.

• Care management – dealing with the bureaucracy, namely, mediating between the patient and medical staff, taking care of reimbursements, searching for information, exercising rights, filling out forms, documenting a medical file, etc.

• Emotional support – providing emotional and social support to sick beloved ones that are different from the usual exchanges among family members. Studies show that this is the most challenging part of the role.

• Decision-making – in the case of guardianship/power of attorney, the responsibility falls on a caring family member when it comes to decisions related to medical procedures [4].

Mrs. Rachel Ledany: Being a caregiver for a beloved one can be meaningful and rewarding but might also be a source of stress, frustration, and anxiety. Thus, family caregivers are populations at higher risk of illness, mortality, and self-neglect of health, due to the direct impact of the burden of care on their health. The following might be the consequences of functioning as a caregiver:

• Direct impact of the treatment on the health of the caring family member.

Over the years, various models have been developed that try to map the relationships between different factors and characteristics and the care burden [5‒8]. Emphasis was given on the characteristics of the informal caregiver (age, gender, relationship to the patient, marital status, employment, and level of education), the characteristics of the care performed, and the characteristics of the environment. The results of that load can manifest in psychological restlessness, a behavioral response (such as neglect of health), or a physiological response (for example, a high blood pressure). The impact on health is more significant among family caregivers whose caregiving demands are greater and who experience chronic stress. A population at specific risk is that of the spouses of patients.

• Self-Neglect of Health

In addition to the direct harm to the health of the caring family member due to the physical and emotional burden, one of the consequences of caring for a family member is self-neglect of one’s own health. This includes, among other things, avoiding medical visits; no show for invited medical tests, as well as avoidance of bed rest during illness. Such behavior might have a direct impact on the health status of the caregiver.

• Family members’ perception of their capability as providers of medical and nursing care.

Many family caregivers report not feeling skilled enough to perform even minor medical interventions because of lack of formal medical training. A central concept that relates this sense of skill with health outcomes is self-efficacy in treatment, defined as the therapist’s belief in his/her ability to deal with the stress factors and challenges involved in providing treatment [9]. Family caregivers with a higher sense of self-efficacy tend to see caregiving tasks as duties that can be dealt with and tend to better overcome difficulties and find ways to cope with problems, while those with low self-efficacy tend to be left with deprivations and feelings of failure [10].

• Occupational/Financial Consequences

Family caregivers pay also a financial price for providing care to their beloved ones. Attempts to estimate the economical price are complex. In the USA, for example, the estimate is that caring family members provide approximately 37 billion hours of care per year to their elderly relatives who suffer from disabilities in their day-to-day activities. As of 2013, the economic value of this care is estimated at approximately 470 billion US dollars.

Mrs. Rachel Ledany: Family caregivers usually know the condition of their sick relative best. Their knowledge may be very effective in designing the treatment plan and identifying difficulties in implementing it. Studies show that when the treatment is planned without involvement of the caregiver, the frequency of rehospitalization increases and compliance with medications as well as treatment integration decreases.

One of the problems is that family caregivers do not perceive and define themselves as such and are not aware of their own need for help. Furthermore, they might be ashamed to ask for it. Professionals can make a significant contribution both by helping the family members to identify and self-recognize themselves as caregivers and by referring them to facilities and authorities that can support them. Furthermore, professionals can help by providing information and by training caregivers, thus empowering their confidence to perform minor medical procedures.

Mrs. Rachel Ledany: Along with the feeling of responsibility and obligation, the involvement of family members as caregivers has positive consequences for the caregiver as well as for the patient. These include a feeling of satisfaction and empowerment as well as enforcement of the bond between the caregiver and the patient. It was shown that following the treatment, 80% of family members who provide care report on improvement in the cohesion and closeness. From a personal point of view, I feel that it is a great privilege to be there for our beloved ones and escort them closely in the challenging journey.

Mrs. Rachel Ledany: Assistance provided as early as possible and as personalized as possible will enable better fulfillment of the caregiver’s duties alongside the maintenance of a reasonable quality of life. Family caregivers should be recognized, identified, reached out, and supported. In other words, recognition, self-awareness, identification of the needs of the patient and the caregiver, and the buildup of a support network as early as possible can make the intricate process easier for the caregiver as well as for the patient. At present, the types of interventions available for family caregivers include support peer groups, individual support/personal training, respite (or short breaks), care management and coordination plans, provision of information and training, online training programs, support of family caregivers at workplaces, as well as legal planning and decision-making.

Dr. Pia Raanani: I see the role of the caregiver as pivotal to the well-being of the patient and the success of treatment. I believe that establishing a good, transparent, and stable relationship between the medical staff and the caregiver is of utmost importance in the patient’s journey. I can think of several ways to implement it.

First of all, identifying and defining who the caregiver is and documenting it in the patient’s medical records is of utmost importance. Second, recognizing the value and legitimizing the role of the caregiver as an integral part of the treatment plan is crucial. Third, relating to the caregivers' needs and frustrations by proactively approaching them and by showing a true interest in them is also very important.

Another aspect is the active integration of the caregiver and other members of the family into the treatment plan. This can be done by providing information regarding the disease course and treatments. Furthermore, we, as health care providers, can help by establishing structured communication pathways to share medical decisions with the caregivers as well as by training them to do medical operations by themselves. And last but not least, awareness of the direct impact of the patient’s disease on the health of the caregivers will, at the end of the day, support the caregivers in helping us as health care providers to help the patients through their demanding journey.

We, Rachel Ledany and Pia Raanani, gratefully thank Mr. Giora Sharf, founder of the Israeli CML Patients’ Organization and of the Israeli Blood Cancer Patients’ Organization – “Flute of Light” and cofounder of the global CML Advocates Network, for introducing us. Rachel Ledany would like to thank Prof. Eli Carmeli from the University of Haifa, who serves as the Chairman of Caregivers Israel, for a long and persistent contribution to clinical research and academic publications in the field of family caregiving.

The authors have no conflict of interests to declare.

This interview did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Pia Raanani conceived the presented idea for the interview. Rachel Ledany and Pia Raanani designed, conducted, and wrote the interview. Rachel Ledany drafted the manuscript. Both the authors approved the submitted and final version of the manuscript.