FGN3: “We arrange care meetings with family members or together with family members, and a doctor, a nurse, relatives and the patient are present”.
FGPN1: “If there are any questions regarding the disease or prognosis… then yes, it is a doctor (who shares the information)”.
FGP2: “The best way (to share information with a family member) is to have the patient’s family members involved during the appointment”.
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Care meetings
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Keeping the family member informed of the care
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Support by providing information to family members
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FGP2: “We tell them about the disease and possible future symptoms and what to do and whom to contact (how to support)”.
FGN4: “We always meet (the family members), or if they don’t come to the ward, then we call, we get in touch anyway”.
FGPN1: “Some family members want to know how the patient has been, if there have been any symptoms and then, whether they have slept and eaten, if they have been awake and if they have been well”.
FGPN2: “We call very quickly if there are any changes in a condition, in one way or another”.
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General information sharing
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FGN1: “You can then touch the patient gently. Here, they are sleeping, they look calm, our medication is working, they don’t need to suffer anymore”.
FGN3: “We repeat the fact that the situation seems bad, that it is not known if the patient will see the next morning”.
FGN6: “Family members want to know more about everything now. You have to know how to explain everything and go through those things a lot more than before”.
FGN3: “Or to justify why an unconscious patient is not given a nasogastric tube and nutrition through that”.
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Getting a family member to understand a patient’s situation
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Requirements for information sharing
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FGP2: “To be honest with patients and family members and use the word death as well, to use the right terms. To not use a figure of speech or metaphor that someone does not understand”.
FGP1: “Sometimes, you are forced to say things very directly to family members, even though they may not want to hear it”.
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Providing direct information
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FGN3: “We must then respect the fact that the patient does not want information shared with family members”.
FGPN3: “If the patient says that they do not want anyone to be given information, then I have to agree. No matter how angry that family member is, I must respect that patient’s right to self-determination”.
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Respecting a patient’s will to deny information sharing with family
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FGN8: “I often say, ‘try to take care of yourself, get some rest, go outside for a while, or sometimes just ‘have you remembered to take your own medicine?”
FGP1: “We also need to evaluate how the family member is doing”.
FGP1: “The wishes have been recorded by the palliative care coordinator, and the wishes of the family members have been taken into account”.
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Taking care of family members’ well-being
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Support concentrating on family members’ needs
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Emotional support for family members
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FGN2: “If there is an acute case where the patient has just died, then we will contact the crisis services”.
FGP2: “You can also ask if the family member wants a conversation with the hospital pastor”.
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Organising additional support for a family member
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FGPN3: “And creating a safe, confident feeling for family members so that they were able to leave here and have trust”.
FGP1: “The feeling of security that conveys a sense that the patient is well cared for”.
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Creating confidence that a patient receives good care
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FGN7: “They can always come here, they can always be here and are always welcome”.
FGP1: “Whenever there is a single room… and of course, the aim is to have a single room if a family member wants to stay”.
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Enabling the presence of family members
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Supporting family members’ and patients’ togetherness
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FGN1: “That’s how we make the family members feel useful because basic care is what they can participate in. They can help with the feeding and bathing and take care of those things”.
FGP1: “I usually encourage family members to come to the care unit; if they hesitate at all, their presence cannot be replaced later”.
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Encouraging family members’ participation
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FGN3: “In that way, they should be treated more gently, however, because the situation is always unique… so remember that it is a truly unique situation for that family”.
FGPN1: “And you can say: ‘I can stay here with you for a little while. There’s nothing to fear”.
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HCP’s compassionate presence with the family members
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Supportive encounters
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FGP2: “We aim to talk to family members, sometimes even more often than with the patient”.
FGN4: “Some families are very open; they want to discuss everything… Some withdraw, they don’t want to talk… and you should be able to respond to it”.
FGN5: “So also listen to family members; they often want to tell stories about the patient or this situation and go through the illness”.
FGPN3: “So that (a family member) can say goodbye, and then we support them by listening to those stories and are guided in these matters”.
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Discussing with the family members
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FGN6: “There could be a space, a room for the families, and they could even make coffee whenever they wanted to”.
FGPN3: “Well, that we could have a space where you could discuss with a family member because we are not allowed to have conversations at the doors of the rooms”.
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A better physical environment for families
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Allocating resources to the family members support
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Practices to improve support for family members
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FGN7: “Here, they just look at the number of patients and not at all at how much time we spend on the phone talking to family members. It is not a concrete task and cannot be scheduled, and there should be more time for it”.
FGP2: “If Thursday’s schedule has three family meetings and ten new patients, then there is not enough time (to take the family members into account).
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More time for encounters with the families
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FGP2: “Perhaps a certain systematicity in that support would make it available to everyone according to some structure”.
FGN3: “That family members could be involved at an earlier stage… that they too could hear those things in advance”.
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Better consideration of family support
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Coordinated formal and informal support for family members
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FGN2: “What I would like to see developed would be such bereavement support for family members”.
FGP2: “Bereavement support, taking care of family members after a patient’s death, a monitoring system, should be developed”.
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Development of bereavement support
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FGPN2: “Cooperation with family members should start to be mapped out, or if they want to network and talk to each other, such an event should be organised for them”.
FGP2: “Family members’ evenings or something like that could be to meet the health care staff too, and maybe family members could find support from each other”.
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Informal events for families
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FGPN2: “There should be someone who would come here to train us (about dealing with family members); interacting here is so important, and meeting with family members is highlighted”.
FGP2: “So we could develop our own communication”.
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Better communication skills
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Developing personnel’s competence
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FGPN1: “It would be nice to have some training”.
FGP1: “Education and experience are probably the best teachers (how to improve support)”.
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Education about family care
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