Integrating Distance Caregivers into family-centered, Quality Cancer Care

In an era characterized by globalization and mobility, the traditional concept of caregiving has
expanded beyond geographical boundaries. Distance caregiving has emerged as a significant
aspect of contemporary family dynamics, challenging individuals to provide support and care
for their loved ones from afar. This paradigm shift is fueled by factors such as career
opportunities, educational pursuits, and the general dispersal of families across the globe.
Distance caregiving, also known as long-distance caregiving, refers to the scenario in which
individuals provide support and care for their family members or friends who live in a location
that is not accessible. This type of caregiving is not limited to a particular age group or health
condition; it spans various situations, including aging parents, supporting a friend with a chronic
illness, or ensuring the well-being of a sibling or child living in a different city.

The concept of distance caregiving is on the rise. Limited research indicates that caregivers in
such situations are grappling with notable anxiety and distress, prompting the need for nursing
intervention. Historically, healthcare providers have not effectively addressed the specific
needs of these distant caregivers or integrated them into family-centered, quality cancer care.
The omission of their involvement in the patient’s care plan and the absence of supportive
interventions inadvertently complicate medical decision-making in clinical settings, especially
during challenging phases of the patient’s illness trajectory. This includes the difficulties of
results of scans for cancer status, chemotherapy treatments, treatments for other health
conditions, and the devastating report of the advancement or return of cancer the family
thought was improving.

This article discusses some of the distant caregiver’s challenges, the possible complex emotions
experienced by the distant caregiver, steps that may be taken to alleviate these feelings, and
strategies that may support a smoother process for all participants involved in the care
recipient’s journey.

Distant Caregivers’ Challenges:
Part-time distant caregivers often coordinate with health professionals or other family
caregivers living near the recipient. These distance caregivers face numerous challenges
including, but not limited to:
• Limited Physical Presence: Their inability to be physically present for day-to-day care,
emergencies, or routine activities. This absence may lead to guilt, helplessness, and
frustration for the distant caregiver.
• Communication Barriers: Communication becomes crucial. Time zone differences, busy
schedules, and technological challenges may hinder regular updates and check-ins. The
caregiver may have meetings at work and cannot be on Zoom or telephone calls to stay in
the loop on the care of the loved one. Misunderstandings may arise due to the lack of
in-person conversations and non-verbal communication.
• Navigating Healthcare Systems: It is hard enough for a local caregiver, much less a
distant caregiver, to coordinate medical care, and it can be complex at a distance,
especially when dealing with different healthcare systems, insurance policies, and
providers. Obtaining accurate information about the care recipient, tracking care,
scheduling appointments, or coordinating cancer treatments can be a daunting task.
• Sustaining Their Other Responsibilities in Life: These distant caregivers have multiple
responsibilities in life that may include a stressful job, other children in their home to
take care of, a special needs child, nurturing their partner, maintaining their social
activities and friend relationships, and last, but not least, maintaining their own well-

Caregivers’ Complex Emotions:
Distance caregivers often undergo a range of complex emotions as they navigate the challenges
of providing support and care from afar. The emotional landscape can be multifaceted,
influenced by numerous factors such as the nature and seriousness of the cancer patient’s
condition, the caregiver’s personal circumstances in their immediate family and their work
situation, and the effectiveness of the caregiving arrangements and collaboration with the
other caregiver’s and/or health professionals’ team.
Nursing interventions have the potential to alleviate the unnecessary suffering and distress
experienced by distance caregivers who often feel disconnected from the oncology team. A
crucial step involves inviting the distant caregiver to be part of the care plan, laying the
groundwork for a trusting relationship, and offering essential emotional support. Providing
educational resources and guiding them to relevant websites can offer both practical and
emotional support from a distance. Innovative technology is an additional connection when
distant caregivers cannot physically visit the patient, including the mother, father, sibling, adult
child, or close friend who would like to participate in a physician’s office or treatment visits.
By equipping these distant family members with knowledge about their role and facilitating
much-needed support and collaboration, they can become valuable support for the cancer
patient and local caregivers, ensuring success in their part-time caregiving responsibilities.

Some common emotions caregivers may feel include:
• Guilt for being unable to be present with direct care, attend medical appointments or
treatments or manage daily responsibilities. They feel the guilt of not doing enough and
stress that the primary local caregivers may be overburdened with their loved one’s
care responsibilities. Other friends and family members need to consider that the local
caregiver deals with the situation daily. They should have a clearer understanding of the needs and situation involving the care recipient. Distant caregivers should be
compassionate and cooperative to keep a sustainable and effective working
relationship and collaboration with care partners.
• Helplessness for the inability to immediately respond to emergencies or be there for
their loved ones in times of need can create a sense of helplessness and frustration.
• Worrying about the well-being of the care recipient, especially when dealing with
health issues or aging, can lead to persistent worry and anxiety.
• Worrying that local caregivers may feel that the distant caregivers are not carrying their
responsibility. For example, the aging parent is ill, and siblings living near the care
recipient must carry the day-to-day responsibilities of the parent’s care.
• When scheduling conflicts or misunderstandings occur, they feel frustrated when trying
to coordinate care and communicate effectively with other caregivers and health
• Distant caregivers may experience a sense of isolation, as they may not have the same
level of in-person support and shared experience as the local caregiver.
• Juggling the demands of distance caregiving with personal, professional, and other
family responsibilities can create a constant sense of imbalance and stress.
• The emotional toll of caregiving, even from a distance, as a part-time caregiver can lead
to exhaustion as caregivers navigate complex emotions over an extended period.
• Some distant caregivers may feel relief and satisfaction despite the challenges.
Caregivers may also experience moments of relief and satisfaction when they
successfully coordinate care, address issues remotely, coordinate effectively with other
local caregivers, or witness positive outcomes for their loved ones.
• The distant caregiver may feel more connection and fulfillment, maintaining emotional
connection through regular communication with the local caregivers, the care recipient,
and the health professionals, even when distance is a barrier.
• It is important that distant caregivers remain adaptable. They often need to be highly
adaptable, adjusting their plans and strategies as their loved one’s circumstances
change, which can evoke a mix of emotions such as frustration or sadness.
• Trying to balance personal and professional commitments with caregiving
responsibilities may lead to stress, anxiety, depression, sadness, and possibly caregiver

It is important to recognize that emotions can vary widely among distance caregivers
depending on the situation, including, but not limited to, the health status of the loved one,
relationship dynamics within the family unit, communication and collaboration with the care
recipient, healthcare team, and other caregivers who may be family or friends.
It is essential to recognize that emotions vary widely among distance caregivers, and individual
experiences are unique. Open communication, support networks, and prioritizing self-care and
well-being are crucial to coping with the emotional challenges of providing care from a

Strategies for Successful Distance Caregiving:
It requires forethought and planning regarding communication, utilizing technology, building a
support network, and planning visits strategically. By doing this, it establishes a workable,
stress-reducing strategy within the distant caregiver’s life and family situation, including their
job. Within this strategy, attempt to sustain a harmonious collaboration with the caregivers
who reside near the care recipient and the healthcare team or partners.

Communication: Establish clear communication channels to foster open, honest
communication with the care recipient and other involved family members. Get regular
updates and have discussions that can help all participants understand evolving needs and
challenges on this journey. Utilizing technology for virtual communication might include video
calls, messaging apps, and emails, which provide a means to stay connected and engaged and
reduce feelings of isolation.

Utilize Technology: Coordinate with the healthcare provider and caregivers who reside with
your loved one to discover what technology might be available for healthcare management,
such as online medical records, appointment times, healthcare team names, and locations.
Consider using telehealth consultations and possibly medication management apps. Set up
smart home devices for remote monitoring and assistance. Of course, all these options may not
be feasible because every situation is different.

Build a Support Network: Depending on the situation, and as appropriate, connect with local
friends, neighbors, and professional caregivers to provide on-site support for the loved one.
Investigate and utilize local resources, such as home care services and support groups, possibly
including your loved ones’ friends at their faith-based and community organizations. Do
research to find out about all the social services in the care recipient’s community. The
healthcare organization can provide information on social workers. These resources can offer
practical assistance, information, and emotional support to the care recipient and their

Plan Visits Strategically: In coordination with your loved one’s local support team, coordinate
visits to maximize the impact. Plan around noteworthy events, medical appointments, or times
when you, as the distant caregiver, can be most helpful to the care recipient and their local
support network.
When planning visits, consider coinciding with major events, medical appointments, or times of
increased need. The local caregiver may need a break or getaway. You can support the local
caregivers by managing the care and being with your loved one while they rejuvenate. This time
will allow you to assess the situation, provide firsthand support, and make necessary
adjustments to the caregiving plan in coordination with the local caregiver and care team.

Distance caregiving is a complex and evolving aspect of modern life, requiring adaptability,
communication, understanding, initiative-taking planning, and collaboration with the care
recipients’ support network. By acknowledging the challenges and implementing effective
strategies, distance caregivers can provide valuable support and maintain a meaningful
connection with their loved ones, even across vast geographical distances. As society continues
to evolve, so must our approach to caregiving, ensuring that distance does not diminish the
quality of care and support we can offer to those we hold dear. Coping with the emotional
challenges of distance caregiving is an ongoing process that requires adaptability and resilience.
The journey may be smoother by planning, discussing responsibilities to assign to the local
caregivers and the distant caregivers, communicating with compassion and understanding, and
seeking support and available local resources. By implementing these strategies and seeking
support from both local and remote networks, caregivers can better navigate the complexities
of providing care from afar.