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. 2021 Oct 8;9(10):1337. doi: 10.3390/healthcare9101337
ERA
Framework
Experience Reflection Action
Reflective Cycle Description: What happened? Feelings: What were the caregiver’s feelings and thoughts? Evaluation: What was good and bad? How was the experience perceived? Analysis: What sense did the caregiver make of the situation? Conclusion: Settling in and wrap-up thoughts about the experience Action plan: How was settling in the role? What/How did the caregiver do/adapt?
Online Survey Question 12. Event that led into caregiving
3. Shares home
5. Shares tasks
13. Feelings upon becoming a caregiver 16. Metaphor or image of caregiving 14. What it means to be a caregiver 16. Describe the process of settling in the caregiver role (feelings, experience) 16. Describe the process of settling in the caregiver role (actions to settle in)
Group 35 12. Event
Illness (20)
Injury (7)
Death of in-charge of care (4)
Disability (4)
TH051—Worry and anxiety due to a sense of unpreparedness for providing for care recipient’s needs; feeling of loss. (11) TH063—Focus on the present situation, accepting one does not know what will come in near future, a situation can change quickly. (13) TH070—Work for and provide for needs of care recipient anytime. (17) TH083—Continuous learning, settling in the caregiver role as a long process. (4) TH090—Continuous learning to adapt to changing demands of caregiving while trying to balance personal life. (9)
3. Shares Home
Yes (29)
No (6)
TH052—Lack of time and freedom to pursue personal and professional lives (no choice). (7)
TH053—Strong will to help and be useful to others, hopeful. (7)
TH059—Life taking a turn that the caregiver did not deliberately choose. (4)
TH065—Very low priority put on personal life activities, difficulty to plan activities with others. (4)
TH064—Constant availability, be present. (4)
TH066—Love, support, patience. (4)
TH069—Give up personal choice in life, give up personal life. (6)
TH071—Be available and present, always-on mode. (6)
TH073—Give love and support to the care recipient. (6)
TH079—Sudden new reality to attend to. (3)TH080—Give up personal life, change to personal life. (3)TH081—Difficulty in settling in the role, no recipe for the role. (3) TH091—Support and learning from professionals and associations helped adapt to the role or to be able to pursue personal life activities. (4)
5. Shares Tasks
No (21)
Yes (14)
TH055—Responsibility, duty. (5) TH062—Dedication and work for the care recipient’s well-being. (3)
TH067—Responsibility, duty. (3)
TH075—Be many-in-one, wear many hats as a caregiver. (2) TH082—Initially easy, increasingly more difficult and demanding. (2)TH087—Care recipient is the priority, dedication. (2) TH089—Focus on the current situation and attend to it as it requires. (2)TH092—Responsibility, duty. (2)TH093—Care became a routine. (2)
TH056—Determination to get things done, adaptation to it. (4)
TH054—Physical, emotional, or financial exhaustion. (3)
TH057—Solitude, abandonment. (2)
TH057—Following values passed down by previous generations. (1)
TH050 – A relief to have a diagnosis. (1)
TH058—Difficulty in accepting reality. (1)
TH060—Ability to flourish in the caregiver role. (1)
TH061—Self-knowledge, knowing what one can and cannot do. (1)
TH068—Gratefulness for care recipient’s condition improvements. (1)
TH072—Find meaning in the caregiver role for both caregiver and care recipient. (1)
TH074—Transmit values. (1)
TH076—Slavery. (1)
TH077—Responsibility. (1)
TH078—Realization that the situation would not change and need to find peace and joy in life. (1) TH084—Routine. (1) TH085—Normal. (1) TH086—Exhaustion. (2) TH088—Locate purpose and meaning in little things. (1)
Group 27 12. Event
Illness (15)
Death of in-charge of care (7)
Disability (2)
Injury (2)
Help (1)
TH003—Worry and anxiety due to a sense of unpreparedness for providing for the care recipient’s needs. (12) TH017—Be present to support and understand the care recipient. (7) TH024—Work for and provide for the needs of the care recipient anytime. (17) TH035—Difficulty in settling in the caregiver role. (4) TH044—Understanding of the care recipient and their condition. (4)
3. Shares Home
Yes (23)
No (4)
TH002—Sense of pride to be helpful. (4) TH019—Alertness to constantly monitor and adapt to the situation at hand. (5) TH027—Act of love. (6) TH031—Continuous learning for constant adaptation to the role. (3)TH032—Sudden new reality to attend to. (3) TH042—Determination to face and overcome challenges. (3)TH046— Immediate and instinctive settling in the caregiver role and its demands. (3)TH043—Learn with and receive support from professionals, associations, attending training. (3)
5. Shares Tasks
Yes (16)
No (11)
TH004—Responsibility, duty. (3)
TH006—Physical or emotional tiredness. (3)
TH008—Demanding activity with a positive side. (3)
TH015—Lack of time and freedom to pursue personal things. (4) TH025—Selflessness. (2) TH034—Exhaustion. (2)TH036—Decisions that led to loneliness and low priority put on the personal side of life. (2) TH041—Realization that caregiving requires continuous learning. (2)
TH001—Willingness to support. (1)
TH005—Sense of changed relationship. (1)
TH007—Sense of preparedness (attended training). (1)
TH009—Sadness. (1)
TH010—Happiness. (1)
TH014—Act of love. (3)
TH011—Give and receive (now or in future). (2)
TH016—Change in role. (2)
TH020—A challenge. (2)
TH012—Demanding mission. (1)
TH013—To be more and better. (1)
TH018—Destiny. (1)
TH021—Intimate and profound experience. (1)
TH022—Prepare one’s future. (1)
TH023—Give and receive (now or in future). (1)
TH026—Gratitude. (1)
TH028—Responsibility. (1)
TH029—Pride. (1)
TH030—Faith. (1)
TH033—Self-Sacrifice. (1) TH037—Interesting. (1) TH038—Responsibility, duty. (1) TH039—Emotional value. (1) TH040—“Ain’t no mountain high enough”. (1) TH045—Redefinition of caregiver’s life priorities. (1) TH047—Love, duty. (1)
Group 4 12. Event
Injury (2)
Disability (1)
Illness (1)
TH101—Worry and anxiety due to a sense of unpreparedness for providing to care recipient’s needs. (2)
TH102—Lost, alone, lack of support. (2)
TH103—Courage, gratitude, strength from love. (2)
TH105—Lack of support, process inefficiencies, paperwork. (2)
TH108—Unexpected turn of events, a sudden new reality to attend to. (2)
TH109—Work for and provide for the needs of the care recipient anytime, an act of help. (2) TH114—In the past, easier. Now, more difficult, less energy than when started. (2) TH117—Maintenance of/participation in activities/events outside the caregiver role. (1)TH118—Learn with and receive support from professionals, associations, attend training. (1)TH119—Left job to focus on care. (1)TH120—Received support from a housekeeper. (1)
3. Shares Home
Yes (4)
TH100—Caregiving as a natural/anticipated path. (1) TH104—Give up personal life to prioritize caregiving, being an extension of the care recipient, stop living own life to dedicate to care. (1)
TH106—Resources demanding activity (especially, financially). (1)
TH107—Love. (1)
TH110—Availability. (1)
TH111—Act of love. (1)
TH112—Comforting. (1)
TH113—Exhaustion. (1)
TH115—Difficulty in seeing others ‘having a life’ when the caregiver is not. (1)TH116—Had to do what was necessary to support the care recipient/s. (1)
5. Shares Tasks
Yes (1)
No (3)