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Category 1 - Causal condition: Becoming a family caregiver in home palliative care |
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(P1) Between staying in the hospital and receiving care at home, the family preferred to take and keep at home a family member with chronic conditions and dependences, understanding that they would have more affection, care and less risk of complications. They recognize that this decision causes exhaustion, physical and emotional exhaustion in family caregivers. |
FCV (15)
HPV(**)
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(P2) One learns to care for a family member from the beginning of dependence on care at home and, progressively, with daily experiences. |
FCV (14)
HPV(**)
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(P3) Care is taken with love and care, recognizing that PC is temporary, due to the severity of a family member’s disease. |
FCV (12)
HPV**
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(P4) Daily activities are organized according to family members’ health condition and care needs. |
FCV (12)
HPV(**)
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(P5) They know that a family member is close to death, they anticipate that they will miss them, but they have the feeling of accomplishment, due to the effort to do the best they can. |
FCV (11)
HPV(**)
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(P6) They dedicate themselves to caring for family members at home, leaving aside them own care and needs. |
FCV (9)
HPV(**)
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Category 2 - Consequences: Identifying consequences of home care for loved ones in palliative care: feeling the burden of care |
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(P7) Caring for the loved one in PC was considered a life lesson, experience formation and possibility of maturation. |
FCV(15)
HPV (5) |
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(P8) Taking on HC of a family member with PC brought about several changes in caregivers’ lives. |
FCV (12)
HPV (9) |
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(P9) The maintenance and control of domestic activities, financial administration and acquisition of materials and medicines were accumulated with the various functions and responsibilities of direct care of a family member, such as bathing, hygiene, food and other primary care. |
FCV (10)
HPV(9) |
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(P10) They started to sleep less than they slept before taking on care. |
FCV(9)
HPV(**)
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(P11) Financial difficulties increased due to expenses with family care under PC. |
FCV(9)
HPV(9) |
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(P12) They have a feeling that “life stopped” after taking care of a family member. They felt that they were living a family member’s life more than theirs. |
FCV (9)*
HPV**
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(P13) Many times, a caregiver has doubts, uncertainties, feels stressed, with fear, anguish and sadness. |
FCV (9)
HPV(9) |
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(P14) They dedicate more time to care activities, and this hinders going out to work or performing some paid activity. |
FCV(9)
HPV(9) |
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(P15) They feel physical, emotional, social and financial burden, for having to take over a family member’s home PC. |
FCV (8)
HPV(8) |
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(P16) A caregiver needs more care than a patient in HC because they are worn out. |
FCV (8)
HPV(9) |
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(P17) Relationships with other family members and friends were impaired, and interaction with other people was reduced. |
FCV(8)
HPV(9) |
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(P18) They almost never left the house, and the opportunities to go out were reduced. |
FCV(7) HPV(9) |
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(P19) The psychological condition from before has changed: sometimes they feel angry, other times they are quieter, sadder and cry. |
FCV (6)
HPV(9) |
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Category 3: Strategies and actions: Developing action/interaction strategies to deal with the death/dying process of a family member at home |
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(P20) We seek to provide a family member what they need the most: love and the presence of the family. |
FCV (14)
HPV(9) |
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(P21) Life experiences, religion/belief/faith, clarification and support received from professionals, friends or family members help to deal with a family member’s condition of dependence. |
FCV (13)
HPV (8) |
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(P22) They recognized as support for HC management the receipt of materials needed for dressings, hygiene and others, according to a family member’s care needs and availability at the HCS. |
FCV (12)
HPV (9) |
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(P23) They recognized that a necessary action is to assimilate the terminality of the loved one’s life, but it is usually difficult to think about the loss, despite knowing its severity. |
FCV (11)
HPV(**)
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(P24) Previous experiences in caring for another sick person contributed to alleviate the way of reacting in the care of a family member with a disease that threatens continuity of life and that has PC indication. |
FCV (10)
HPV(7) |
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(P25) Each person reacts differently to a disease that threatens continuity of life and is indicated for undergoing PC treatment. |
FCV (10)
HPV(7) |
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(P26) Over time, caring for a family member in PC at home facilitated the acceptance of end of life, by closely monitoring the reactions to the disease, treatment and understanding how the disease threatens continuity of life. |
FCV (9)
HPV(**)
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Category 4: Contextual conditions: Establishing macro and micro connections: family/household as place of care |
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(P27) Not all families know the day when the HCS team will make a home visit, unless a procedure is scheduled, such as material collection for exams. |
FCV (13)
HPV(7) |
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(P28) The HCS is a reference for HC. |
FCV (12)
HPV(8) |
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(P29) Visits by team healthcare professionals occur whenever possible, weekly, varying according to the types of patients’ needs and possible aggravations or complications. |
FCV (12)
HPV(9) |
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(P30) Professionals should identify weaknesses in family caregivers, seeking to help them, since the experience of a family member with an incurable, progressive disease that threatens continuity of life changes the house routine, and family members also fall ill. |
FCV (11)
HPV(8) |
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(P31) A difficulty for a caregiver and family is to talk about the death/dying process experienced by a family member in home PC. |
FCV (10)*
HPV**
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(P32) The family takes over a large part of the costs generated by HC, especially with materials and health services that they cannot obtain through the Unified Health System (SUS - Sistema Único de Saúde). This tightens the family budget even more, as wages are low and spending is high. Sometimes it is necessary to make “sacrifices” to meet, in the best possible way, a family member’s care needs. |
FCV (10)
HPV(6) |
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(P33) Family caregivers need emotional and social support, and not only help to provide care and alleviate financial difficulties. |
FCV (8)
HPV(8) |
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(P34) Rarely, the team’s health workers talk about PC. |
FCV (7)
HPV(2) |
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(P35) Caregivers are not always supported by other family members. |
FCV (6)
HPV(8) |
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(P36) Rarely, someone among healthcare professionals talks about end of life and the possibility of a family member’s death. |
FCV(7)
HPV(1) |
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(P37) When healthcare professionals talk to a caregiver about the death/dying process with family members, they usually do not talk openly. |
FCV(7)
HPV (1) |
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(P38) When it happens that a healthcare professional talks about the death and dying process, who approaches me more directly is a doctor or psychologist. |
FCV (6)
HPV (5) |
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Category 5: Intervening conditions: Conditions/actions/interaction that modify the course of occurrence of the phenomenon |
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(P39) Both nurses and nursing technicians provide guidance and care to family members when they pay a visit. |
FCV (14)
HPV(8) |
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(P40) There are doubts and difficulties in carrying out the procedures, but when they ask for help from HCS professionals, they are promptly answered. Professionals visit on the same day or the next day. |
FCV (13)
HPV (9) |
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(P41) The HCS team seeks to offer comfort and quality of life to patients under PC, extending emotional support to the family whenever possible. |
FCV (13)
HPV (9) |
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(P42) Communication between professionals and caregivers is important in HC. Family members need to feel comfortable asking questions and talking about their feelings and needs. |
FCV (13)
HPV (9) |
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(P43) The treatment offered by HCS professionals goes beyond clinical and technical aspects of care, as they often pay attention, provide guidance and words of comfort. |
FCV (12)
HPV (8) |
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(P44) Based on professionals’ guidance that a family member’s health status is advanced, caregivers communicate with HCS and request assistance whenever they need it. |
FCV (12)
HPV (9) |
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(P45) The support network of family caregivers is quite variable, including different sources, such as HCS, family members, neighbors, religion/spirituality/faith, among others. |
FCV (10)
HPV (7) |
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(P46) The more frequent presence of psychologists in the home visit would help families to talk about the death/dying process and, consequently, to deal with it better. |
FCV (9)
HPV (9) |
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