🤙Caregiving
Caregivers often face challenges in managing their responsibilities, such as coordinating care, tracking medications, and communicating with healthcare providers.
An appropriately designed mobile app can provide caregivers with tools and resources to help them better manage their caregiving tasks. Caregivers spend a substantial amount of time interacting with their care recipients while providing care in a wide range of activities. Most of the time, healthcare staff has a limited (or no) view of this interaction. Family caregivers operate as extensions of health care systems performing complex medical and therapeutic tasks and ensuring care recipient adherence to therapeutic regimens. They operate as home-based “care coordinators” and personal advocates for care recipients.
Family caregivers also often lack support networks or the time to access available support networks, and there is evidence that social support networks dwindle over time in many caregiving scenarios, resulting in a sense of isolation. Caregiving takes time from usual support sources, including interactions with colleagues, spouses, children, friends, and task-oriented groups or clubs. Caregiver activities are also often limited by distance and mobility restrictions, and difficulties in obtaining respite care, which in turn constrains their ability to participate in traditional models of counseling and psychotherapy. Social support is also often hard to come by in work settings for many caregivers, as many feel they must minimize or hide the adverse impact of caregiving on them when at work.
Common Caregiving Problems
Mental health concerns - Depression - Anxiety - Subclinical stress - High rates of negative affect including guilt, sadness, dread, and worry. - Ambivalence about care - Witnessing the suffering of relatives - Becoming easily irritated or upset - Feeling isolated or abandoned by others - Anticipatory grief
Physical health concerns - Fatigue - Sleep problems - Risk of illness, injury, mortality - Weakened immune system - Lower self-rated physical health compared to that of others of the same age and sex - Adverse changes in health status - Greater health services use and medication use - Dysregulation of stress hormones
Functional and cognitive impairment - Greater need for help with IADL assistance (especially among dementia caregivers) - Difficulty with memory and concentration
Secondary strains - Work – employment (e.g., reduction in work hours, family-to-work spillover, and work-to-family spillover) - Financial strains - Relationship stress - Loss of time for self-care (e.g., sleep, diet, exercise) - Reduced quality of life
Care decisions - “When is it time” for various services? - Residential placement - End-of-life care planning
Resources and eligibility for services - Housing - Healthcare - Community services - Respite
Family challenges - Conflict about care - Lack of support for the caregiver - Balancing the needs of healthy and sick family members - Behavioral issues - Interpersonal conflicts - Lack of cooperation by the care recipient
Advocacy for care - Interface with service systems - Coordinating systems
Caregiving Tasks
On average, caregivers spend:
13 days each month on tasks such as shopping, food preparation, housekeeping, laundry, transportation, and giving medication;
6 days per month on feeding, dressing, grooming, walking, bathing, and assistance toileting;
13 hours per month researching care services or information on the disease, coordinating physician visits, or managing financial matters. [Gallup-Healthways. (2011). Gallup-Healthways Well-Being Index.]
Of family caregivers who provide complex chronic care:
46% perform medical and nursing tasks;
More than 96% provide help with activities of daily living (ADLs) such as personal hygiene, dressing, and undressing, getting in and out of bed, or instrumental activities of daily living (IADLs) such as taking prescribed medications, shopping for groceries, transportation, or using technology, or both. [AARP and United Health Hospital Fund. (2012). Home Alone: Family Caregivers Providing Complex Chronic Care.]
On average, caregivers perform 1.7 of 6 ADLs, most commonly getting in and out of beds and chairs (43%). [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
On average, caregivers perform 4.2 of 7 IADLs, most commonly transportation (78%), grocery or other shopping (76%), and housework (72%). [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
57% of caregivers report that they do not have a choice about performing clinical tasks and that this lack of choice is self-imposed.
43% feel that these tasks are their personal responsibility because no one else can do it or because insurance will not pay for a professional caregiver.
12% report that they are pressured to perform these tasks by the care receiver.
8% report that they are pressured to perform these tasks by another family member. [AARP and United Health Hospital Fund. (2012). Home Alone: Family Caregivers Providing Complex Chronic Care.]
Caregivers report holding significant decision-making authority regarding the following:
Monitoring of the care recipient’s condition and adjusting care (66%);
Communicating with healthcare professionals on behalf of the care recipient (63%);
Acting as an advocate for the care recipient with care providers, community services, or government agencies (50%). [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
Important Issues Specific to Young Caregivers
The primary responsibility of children and teens is to achieve their educational potential. The dual role of being a student and a family caregiver may compromise a young person’s school performance because of the inherent demands and stressors of providing care for a family member with a chronic illness or disability. They may show tell-tale signs of the strain at school. Such signs include:
Decrease in school performance.
Increase in tardiness or absences.
Changes in social behavior, e.g. isolation; and disruptive behavior.
Changes in mood, affect, and emotional reactivity.
Increased worrying about self and/or family, e.g., anticipating bad outcomes, self-blame, and ruminating.
Fatigue.
School drop-out.
Inability to participate in extra-curricular activities.
Bullying or being bullied.
Psychologists both in and out of the school system are in a good position to work with teachers, nurses, and guidance counselors to help identify these at-risk children and teens, especially in middle school and high school settings. Referrals and community resources may then be put in place, in addition to in-school support.
Important issues that may affect the health and well-being of caregiving youth, and must be considered, are:
Taking on adult roles and forsaking age-appropriate and developmental activities, e.g. “parentification” and becoming “medicalized.”
Role reversal from home to school, from being “in charge” to following rules.
Inability to focus and learn at school when worried and stressed about the well-being of loved ones.
Discomfort with opposite-gender caregiving (related to responsibilities such as toileting, and dressing).
Physical injuries from lifting and transferring a family member.
Potential trauma in doing wound care or other medical tasks for a loved one.
Unresolved grief and loss of sense of purpose when a loved one dies, especially when there is no recognition of the role the child or teen had in care.
Guilt, all the “what ifs” done or not done.
Age disparities in the provision of support services since caregiving youth are usually an invisible and therefore underserved/unserved population.
Breakdowns in support services when schools and community organizations lack knowledge about the impact of health conditions on the family, including the existence and needs of youth caregivers.
Long-term effects on physical and mental health, e.g., physical disabilities from injuries, stress-related health problems, depression, anxiety, suicidal ideation, and/or behavior.
Short-term and long-term personal adjustment difficulties, e.g., anger about lost childhood years, conflict with siblings/other family members.
Educational and occupational problems, e.g., inability to graduate, pursue college, and the career choices made by choice or necessity or early socialization into a helping role.
The positive or negative impact of nursing home diversion programs and adult day care programs on caregiving youth depends on whether the community/long-term care helps their circumstances.
Caregiving youth who put their academics and well-being at risk to care for ill, injured, disabled, or elderly family members need extra support from education systems, healthcare systems, and communities. The family caregiving situations and experiences are unique for youth caregivers, but they are parallel to adult caregivers striving for balance between work, personal health, and caregiving. These youth need support to achieve a balance between academics, caregiving, and their well-being. Given adequate support and services, caregiving youth can grow and thrive into adulthood.
The Caregiving support app should provide some, or more of these functionality.
Information on caring for people with chronic diseases, self-care, and access to resources, interactive communication on interest topics, support by experts, emotional intervention and training, and empowerment strategies
Geolocation of family members, location logging
Information about basic and instrumental activities of daily life (nutrition, hygiene, mobility, medication management, home care), and social services and technical information
Shared interactive calendar on specific needs of the person being cared for and organization of tasks
Hiring secondary caregivers and home health care
Medical information, notes, reminders and alerts, and interaction with health professionals and family members
Management of health documentation, appointments, and medication
The Ability Hub App
Caregivers face challenges in managing their responsibilities, such as coordinating care, tracking medications, and communicating with healthcare providers. A mobile app provides caregivers with tools and resources to help them better manage their caregiving tasks.
A place for families & friends to gather and connect around care
Build a team and get help
Organize it all in one place
Coordinate your volunteers
Keep everyone in the loop
Connect to helpful resources
Manage time, communicate, and plan around care
Post on Care Timeline
Coordinate Rides, Meals, Shopping
Auto-Sync Shared Calendars
Store & Share Documents
Share News & Updates
Find Answers & Resources
Free, Private, Secure
The Ability Hub app provides caregivers with the following features:
Medication Management:
Allows caregivers to track their loved one's medications, including dosage, frequency, and when the next dose is due.
Sends reminders to caregivers when it is time to give their loved ones their medication.
Appointment Management:
Allows caregivers to track their loved one's doctor's appointments, therapy appointments, and other important events.
Sends reminders to caregivers about upcoming appointments.
Communication:
Allows caregivers to communicate with their loved one's healthcare providers through secure messaging.
Provides a central location for all communication related to their loved one's care.
Support and Resources:
Provides caregivers with access to a library of articles, videos, and other resources on caregiving.
Connects caregivers with a community of other caregivers where they can share experiences and support each other.
Benefits
The app will provide caregivers with the following benefits:
Reduced Stress: By helping caregivers to manage their responsibilities more effectively, the app will reduce their stress levels.
Improved Quality of Care: The app will help caregivers provide better care for their loved ones by providing them with the information and resources they need.
Increased Support: The app will provide caregivers with a community of support where they can connect with other caregivers and share experiences.
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