A Research Paper By Milagros Echecopar, Evolution Coach, PERU
Coaching as Support for Informal Caregivers
Changes in our societies, such as the aging population and women’s growing participation in the workforce, have increased the need for caregiving services and raised awareness on a group whose role is usually taken for granted: informal caregivers.
Although there is no official definition, the consensus is that informal caregivers (caregivers from now on) are “people providing usually unpaid care to someone with a chronic disease, disability or any other long-lasting health or care need, outside of a professional or formal framework”(Eurocarers, 2018, p.1). Caregivers not only take care of the patient, but they often make decisions concerning them and take on responsibilities that were formerly part of the patient’s area of responsibility.
Most caregivers often do not identify themselves as caregivers because they consider it is intrinsic to their role as a relative. Thus, they perform the caregiving duties moved by love and affection, a sense of duty, or a need to reciprocate to the patients for what they have done for them in the past. And that is a factor that makes it more challenging to provide support for them.
Besides raising the caregivers’ awareness about their role and their needs as a result of the added responsibilities, there is still a lot to be done: recognize their contribution to our society, acknowledge their role and the inherent challenges it brings, provides the support needed to perform their duties, etc. In this paper, we will focus on the role coaching can play in raising the caregiver’s awareness of what performing that role entails and in providing support to fulfill their duties and minimize its impact on their quality of life.
Coaching Informal Caregivers Reality
Informal caregivers become one most often in an unexpected way, without any preparation to deal with their new circumstances, be it managing the patient’s needs, coping with all the additional responsibilities they take on, dealing with the emotional impact of the patient’s diagnosis, or adjusting to the changes they need to make in their life. According to a study by the AARP Public Policy Institute and the United Hospital Fund (2014) cited by Frank (2015), in the United States, spouses account for approximately 20% of family caregivers, 49% are aged 65 or older, and 70% of them indicated that they felt they had no choice but to take on the responsibility of performing complex medical/nursing tasks.
The role informal caregivers play is, in most cases, fundamental for the patients’ wellbeing. They are responsible for the logistics related to the patient’s treatment and activities, and they are usually their emotional and social support. Thus, the difficulties they face are numerous, but they still can acknowledge some positive effects of their new role, such as the opportunity to build a closer and stronger relationship with their loved ones and grow personally due to having to rise to the challenges.
Besides the work itself -perform a duty for which they are not prepared, monitor the patient’s health and schedule, take the patient to doctors’ appointments, look after the patient and their day-to-day activities, etc.-, there are other challenges associated with becoming a caregiver. In terms of family relations, when faced with a patient who needs caregiving services, families need to reconfigure their dynamic. With decisions and interactions having the patient at the center, this new dynamic is prone to raise conflicts in which the caregiver is deeply involved. Another challenge is dealing with the emotional impact and the effects of the disease on the patient. It is tough for caregivers to be a close witness to the diminishing condition of the loved one and face the growing dependence of the patient.
Additionally, caregivers find it challenging to ask for and getting help/support. Often, they are not conscious of their need and their right to be supported. Thus, they do not ask for help, and people in their network are unaware of the additional assistance caregivers require, nor do they know what kind of support to provide.
On top of the challenges outlined above, becoming a caregiver reduces free time, self-care, and independence; impacts caregivers’ mental and physical health; introduces stress related to finances, employment, and work; and affects self-identity. In addition, the demands of their role often make some caregivers lose sight of the need to take care of themselves not only to be in a good mental and physical condition to be there for the patient and perform the duties required from them, but also to be able to live a fulfilling life even under the difficult circumstances of the present. The level of responsibility they carry is more evident when we realize that caregivers can even feel guilty about taking a break.
In an article published by the Family Caregivers Alliance (June 2021, p. 1), they describe in detail the consequences of this situation:
…to provide the best possible care for a family member or friend, caregivers often sacrifice their own physical and emotional needs. The complex and varied aspects involved with providing care can strain even the most capable person. Feelings of overwhelm, agitation, anxiety, distress, pessimism, isolation, exhaustion—and sometimes guilt for having these feelings—can exact a heavy toll.
Numerous studies show that caregivers can develop mild to serious levels of depression because of this situation moreover if they are part of the “sandwich generation (SG)”, as Turgeman-Lupo, Toker, Ben-Avi & Shenhar-Tsarfaty (2020, p. 2) stress:
…over and above the need to face conflicting demands, SG caregivers are more likely than other caregivers to engage in “surface acting” and invest emotional resources in inhibiting their feelings. Specifically, caregivers tend to inhibit emotional expressions near ill family members (Shaw et al., 2003) as well as near their children (Lee et al., 2016; Yanchus et al., 2010) or spouses (Sanz-Vergel et al., 2012), finding it hard to recover mentally, even at home.
Therefore, caregivers need support to look at their situation from different perspectives, identify the resources they can tap into, and design and follow-through strategies to take care of themselves while caring for their loved ones. However, despite the importance of their role for the patient’s wellbeing, the added burden they face, and its significant impact on them, caregivers’ needs are seldom considered.
Additionally, as the Family Caregivers Alliance (2021, p. 4) points out, “people assume that once caregiving is over, the stress from providing hands-on care will go away. Nevertheless, researchers found that even three years after the death of a spouse with dementia, some former caregivers continued to experience depression and loneliness.” Thus, caregivers’ support networks need to be mindful of the prolonged effects of their role and keep providing help to caregivers even after they are no longer performing those duties.
Coaching: Its Role in Informal Caregivers’ Support
…Today, Arvilla is nearing the end of her life coaching program—but not her caregiver journey…She’s grateful for the tactics she’s learned from Tanya; she says the program provided the support and motivation she needed to care for herself first. (The Good Samaritan Society, 2017)
This testimony by itself shows the impact coaching can have in changing the caregiver’s mindset.
As we have explained above, the number and complexity of caregivers’ responsibilities represent many challenges, and taking on this role has a significant personal impact. Most of the literature reviewed agree on the need for caregivers to have good support networks; develop and apply strategies to cope with the demands of their role; and figure out how to adjust to their new circumstances so they can live a fulfilling life.
When considering support for caregivers from a practical perspective, we need to look at: access to reliable sources of information about the patient’s condition and the pros and cons of the different alternatives; options for acquiring knowledge and skills to feel competent while performing their role; and financial advice and assistance.
However, another type of support is as important as practical support, if not more important. Caregivers need social, spiritual, and mental health support to develop and apply coping strategies as well as to adjust to their new circumstances.
When considering caregivers’ coping strategies, research from the Swiss National Science Foundation cited byRehacare Magazine (2015) indicates that those:
…include actively seeking respite or relief, e.g., in the form of professional support services or help from friends and relatives; keeping themselves informed and acquiring skills; sharing experiences with others; accentuating the positive, allowing themselves time off and attending to their own needs.
On a similar note, studies in the United States indicate that:
…Early attention to symptoms of depression through exercise, a healthy diet, positive support of family and friends, or consultation with a trained health or mental health professional may help to prevent the development of a more serious depression over time. (Family Caregivers Alliance, 2021 p. 4)
Although different networks can provide the support caregivers need, professional assistance, more specifically coaching, can increase the benefits of the support those networks provide and significantly change the way caregivers approach and handle the responsibilities of their role.
Coaching is a process by which the client is supported and challenged by the coach so (s)he can achieve her/his goals. As Morgado (2010) indicates:
(Coaching)seeks to facilitate the creation of bridges that connect the person from the place where (s)he is now, with the place (s)he wants to reach, to achieve it… It is a process of challenge, of re-discovery, of learning and not of submissive acceptance of a hard and painful situation.
The Center for Psychology from Bilbao (2021) notes that coaching as a therapy tool can offer several benefits for caregivers, such as:
- Taking care of their physical, social, and emotional aspects.
- Maintaining their own goals, not just those of others.
- Becoming aware of the need to put limits on their role as caregivers, reserving a space for themselves.
- Becoming aware of their values and establish an order of them.
- Managing their time and make time for themselves.
- Managing the feelings derived from the responsibility to care for others.
Coaching can also provide enhanced support for caregivers by:
- Empowering caregivers to identify strategies and resources they can use to feel that they have some level of control over what is happening.
- Exploring what is holding them back and how to better deal with that.
- Analyzing and dealing with their worries about what will happen with the patient and about their journey.
- Realizing how changing perspectives about what their future might look like can help.
Morgado (2010) proposes that when working on those aspects with the help of a coach, caregivers can improve decision-making inpatient care; increase their self-confidence, gaining momentum and energy for difficult times; improve their empathy and communication skills; adapt to the enormous change that caring for the patient implies, and have more tools for conflict resolution and stress management. Added benefits can be acknowledging their need for help and reaching out to get it; better organize their time and resources, and prepare her/themselves to deal with a crisis or the possible death of the patient. Fee (2015, p. 1) found in his research that:
“A coaching approach helped many of the spouses engage in the process of adaptation and development of a sense of mastery with improved self-esteem, thereby meeting their goals without having to be treated as if they had a mental disorder.”
Coaching & Caregivers’ Support Networks
Support provided by a coach can indeed make a significant difference for caregivers, but it does not work in isolation. Usually, caregivers rely on different support networks that can and should work in conjunction with the coach to enhance the benefits of the help they provide. The primary support networks caregivers rely on our family & friends, the health system, and their employers.
Coaching Informal Caregivers Family & Friends
Caregivers see themselves as a good son/daughter/husband/wife who is doing what is naturally expected of them, but, as we have explained, in fulfilling that role, they face numerous challenges. When we look at what happens when a person has a condition that makes her/him dependent on others for their day-to-day activities and health, we see that it usually happens within a family context, not in the isolation of one human being (the patient) or two (the patient and the caregiver). Furthermore, if we broaden our view a little bit, we will also see that friends and employers are involved.
Caregivers who are being able to fulfill their role with a lesser amount of stress indicate that the support from their families has been critical. Besides sharing the responsibilities with other members of the family, having a sense of teamwork where each of them plays a role, and they do not rely only on the “designated caregiver” provides that person an assurance that the patient’s wellbeing is not only his/her responsibility which reduces the weight of their role. Having someone in the family or a very close friend with whom they can talk about how they feel and discuss how to deal with the different challenges and decisions is also crucial for the caregiver’s wellbeing. Interestingly, some caregivers identify their spouses’ roles as different from the role of their closest sibling. Spouses are seen as the ones on which they can confide in how they feel and get emotional support. The closest sibling is the one with whom they can share frustrations that arise from issues related to their family and discuss alternatives and strategies to approach the other siblings when difficult decisions or situations need to be discussed. When there are no siblings or no close relationship with one of the siblings, the spouse or a close friend plays that role. Another way family can support the designated caregiver is by having clarity on the roles each one plays and being open in the conversations.
As indicated before, caregivers and their families tend to isolate themselves if they do not have a close and robust support network. Thus, friends do have a role to play too. They not only can be an impartial and compassionate ear; they can also provide space for the caregivers to enjoy themselves, relax and think and talk about something different than the challenges they face. Just a call asking how they are doing makes a difference for caregivers.
Although all the above is true, as Idrobo & Maestre (2016) note, caregivers and families tend to agglutinate themselves around the patient’s needs. Therefore, it is important to open those closed relations and build and nurture broader support networks incorporating family members and friends. As explained at the beginning of this section, coaching provides help in many aspects that can make a significant contribution.
Coaching Informal Caregivers Health System
Informal and professional care can and should complement each other. We need to consider that:
The caregiver is not only important because of the functions he assumes of care and accompaniment to the patient, but for how he is positioned within the family system influencing the patient’s decision-making, in the fact that he has a hierarchy and a power greater or similar to the patient, which is a tool the health and medical care team can leverage in processes such as those of adherence to treatment, to work with patients, taking into account that these, according to the results will be guided very much in their decisions by their caregivers…(Idrobo&Maestre, 2016, p. 63)
Despite that, little to no attention is given to the caregiver by the health system besides giving instructions and, in the best cases, tools and support to take care of the patient. However, as we have seen throughout this document, although they are not the patients, caregivers also need support, not only related to the duties they perform in caring for the patient, but also for their wellbeing, which will result in better care for the patient.
Some initiatives are underway which work towards a more inclusive approach to caregivers. For example, the health system has introduced palliative care to enhance the support they provide to the patients and build a partnership with the caregivers. As Stanford University (2021) indicates:
Palliative care is meant to improve the quality of life of patients with serious illnesses as well as the quality of life for family and caregivers. Palliative care is a holistic approach, not just caring for the disease but thinking about the full impact of the disease on a patient’s physical, psychosocial, and spiritual wellbeing.
Though palliative care is a crucial step, attention is still focused on the caregiver’s role as a patient rather than on the caregiver’s needs as an individual. Thus, it is essential to note that caregivers need to be recognized by the health system as individuals, independent of the patients, with personal needs that should be considered and covered. Here again, coaching can come into play by being the means for the health system to acknowledge the caregivers’ role and provides the support they need to perform their duties and take care of their own lives.
The government provides some resources in the United States through the National Institute on Aging, the National Institute of Health’s MedlinePlus, the National Cancer Institute, the Consumer Financial Protection Bureau, the VA Caregiver Support Line, the Office on Women’s Health Caregiver Page. Some private initiatives in the same country are the Family Caregiver Alliance, Caregiver Action Network, National Alliance for Caregiving, AARP (American Association of Retired Persons). In the case of Europe, we found many organizations with a focus on caregivers, amongst which are: Eurocarers and the European network representing informal caregivers and their organizations. Unfortunately, little seems to have been done so far in SouthAmerica, with initiatives more focused on services for the patients and how caregivers can take better care of them.
From our research, we have the impression that private organizations seem to be the ones that have an approach with more focus on caregivers’ needs and thus, incorporate mental health assistance, such as coaching, in their initiatives.
Why include employers as part of caregivers’ support network? First, consider all the challenges caregivers face; now consider they work while at the same time taking care of someone who depends on them for his/her wellbeing. As people can imagine, the burden for a working caregiver is higher and impacts the caregiver’s personal and work life. Thus, employers need to be aware of these employees’ circumstances and provide support accordingly.
Gareis & Cullen (2013, p. 3) identify three possible options for working caregivers: “continuing to work full time and attempting to juggle caring responsibilities with this; downshifting to less than full-time employment in some form (hours reduction), and taking time out from work to provide care (leave).” Considering that women usually take on the role of caregivers, this can be another disadvantage for their professional development and financial independence/security. Additionally, as we mentioned in a previous section, sandwich-generation (SG) caregivers, usually women, are responsible not only for their elders but also for their children, and on top of that, they must work.
It is important to also note that “while the needs of carers with intensive caring responsibilities warrant particular attention, measures to support working carers also need to address the perhaps less dramatic but important impacts that may arise for carers with less intensive caring responsibilities” (Gareis, Karsten & Cullen, Kevin, 2013, p. 3). Additionally, Turgeman-Lupo, Toker, Ben-Avi & Shenhar-Tsarfaty (2020) point out that employees who care for elders (be they SG caregivers or caregivers of elders only) seem to be overlooked when it comes to supportive organizational practices.
Nevertheless, Kropp (2020, as cited Colletta (2020), predicts that 2021 will be the year when employers’ support for mental health will become table stakes of the benefits often given to employees. He notes that the pandemic has shown that if employers help their workers to manage their personal lives more effectively, not only do they have better lives, but they perform at a higher level as well. Kropp (2020) further proposes that having realized the importance of mental health, employers will work to de-stigmatize it and support initiatives to improve the mental health of their employees. Furthermore, through this type of employees support program, coaching can make a significant contribution to the wellbeing of caregivers.
Coaching programs within organizations aim to support employees to attain self-congruent goals or conscious self-changed and self-development; and improve their professional performance, personal wellbeing, and, consequently, the organization’s effectiveness (Rudolph 2014, p. 11). Regarding caregivers, coaching programs provided by employers can be the first step towards a better personal and professional life for caregivers by contributing to raising their self-awareness so that they recognize their situation and look for support. In this regard, Keren Turgeman-Lupo, Sharon Toker, Nili Ben-Avi & Shani Shenhar-Tsarfaty (2020, p. 15) indicate that their “findings suggest that individuals and organizations should increase awareness and take concrete measures to mitigate the potential negative outcomes of multigenerational caregiving.”They propose that these measures can include assisting employees in enhancing their time management skills and/or initiating formal organizational interventions and training programs to enhance work-life balance among SG caregivers.
Gareis, Karsten & Cullen, Kevin, (2013, p. 13) indicate that the benefits of such programs:
… were not confined to caregivers but were also reported for the employers in many cases. In their research, many employers reported a belief that measures for working caregivers, amongst a wider set of work-family balance measures, had contributed to concrete business benefits in terms of reduced absenteeism and low staff turnover (retention), as well as increased motivation and organizational commitment, improved job satisfaction, and other such outcomes.
By incorporating coaching support in these programs, companies can provide caregivers with the help they need to identify and manage their resources in a way that contributes to their wellbeing and to providing good quality care for the patient without jeopardizing their performance levels at work.
In this paper, based on the work made by different researchers, we have shown that caregivers need help to deal successfully with their challenging roles and that this support should be provided from the start continuously and reliably. We have also provided arguments and evidence indicating that coaching can make a significant difference for caregivers when integrated with help provided by their main support networks: family and friends, private organizations and the health care system, and employers. In this regard, Fee (2015, pp. 3-5) provides a case study where he shows that with his support as a coach, a caregiver spouse was able to create a “new life” which incorporated his wife’s condition, and he also partnered with him along the way to be better equipped to deal with the different phases of the patient’s journey.
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