Table 5.
Synthesized finding 4
| Findings | Categories | Synthesized finding |
|---|---|---|
| Home as the place where they “belong” … key goal, in terms of care, was for them to be able to stay in their homes for as long as possible (U) | Home was the preferred place of older persons to receive palliative care and to die | Older persons want to receive palliative care and to die at home; however, this requires both informal and formal supports, including continuity of care, good communication, and positive relationships with health care providers. |
| Fearful that their diagnosis would progress to the point, where the services provided … would not be enough for them to continue to receive all their care at home (U) | ||
| Compared their experiences to that of being in a hospital surrounded by strangers (U) | ||
| Rather die sooner than receive care in a hospital (U) | ||
| Being less fearful of death now that they are receiving palliative care services in their home (U) | ||
| Receiving palliative care services at home allowed them to be surrounded by those they recognize and love … provided them with a greater sense of safety and comfort (U) | ||
| Spending some of their final days at home seemed to prompt familiar and important memories (U) | ||
| The familiar environment of their home also allowed the older adults to be independent (U) | ||
| Being surrounded by their family members was key to defining why the home was the preferred place of the older adults to receive palliative care … and remaining at home was so important (U) | ||
| Negative perspectives regarding the presence of informal supports during the caregiving experience (U) | Informal support | |
| Frustration over lack of face-to-face support from her children (U) | ||
| Too much support (U) | ||
| Informal supports had a positive influence on their lives (U) | ||
| They had friends, family, and neighbours that they could call upon, even if they did not require it (U) | ||
| Wanted their family members to provide the majority of their care (U) | ||
| More dependent on “family” outside the home … increasing reliance on friends and neighbors (U) | ||
| Caregiving experience had brought them closer to their spouses (U) | ||
| Focused effort to “connect” … they gave care to their loved ones (U) | ||
| Communication … an important constituent of the caregiver–care recipient relationship (U) | ||
| Concerned about how the work of caregiving was having a negative toll on their spouses (U) | ||
| Recognized the importance of informal supports for their caregivers (U) | ||
| Reached out to their loved ones, reassuring them of their potential to transcend mortality (U) | ||
| Prepared their loved ones for being on their own (U) | ||
| Effectiveness of their caregiver in providing care for them (U) | ||
| Most families found the health services to be fragmented … Lack of continuity … left little room for patients and family members to receive answers to their questions (U) | Continuity of care | |
| The service that they had received was not well coordinated and continuous (U) | ||
| The families did not want HCNs to always send new people to their homes. It was particularly difficult for patients to receive care from strangers, who did not know their needs, and this meant unpredictability concerning how help would be given (U) | ||
| Appreciation for continuity in the relationships with palliative care nurses (U) | ||
| Continuous care by the same individual(s) was acknowledged by care recipients to be a positive aspect of formal supports (U) | ||
| The cancer nurse was the same over time and an important resource for the families. She communicated information and helped families navigate the health care system (U) | ||
| Lack of communication between the care recipients and health providers was … a major problem (U) | Communication and relationships with health care providers | |
| Communication with their health care providers was important (U) | ||
| Health care providers were perceived as providing uncertainty in how to proceed with care (U) | ||
| Some families thus blamed the GP for the patient’s poor prognosis (U) | ||
| Families expressed low confidence in the GP’s competence (U) | ||
| Many patients did not wish to, or were unable to, maintain contact with the health services and handle the information regarding their own health situation (U) | ||
| More or less completely delegated that responsibility to their family members (U) | ||
| It seemed easier for the patient to delegate and for family members to take over when a spouse or family member had health service training (U) | ||
| Experiences of being connected with their nurses were in keeping with their sick role (U) | ||
| The nurses were insensitive (U) | ||
| Patient and caregiver psychological well-being is improved through having a good relationship with nurses (U) | ||
| Nurses can, holistically, understand an individual’s situation which ensures that the patient’s needs and wishes remains central (U) | ||
| Lack of information and poor communication with health care providers (U) | ||
| Service workers were not aware of what other service workers had done (U) | ||
| All care recipients acknowledged how helpful and supportive formal services have been (U) | Formal support | |
| Grateful that community-health palliative care professionals were able to enter their homes and assist their family members with providing care to them (U) | ||
| The hospital doctors and nurses, district nurses could bridge the hospital/treatment dimension of the outside world and the disease/cancer dying world (U) | ||
| Some district nurses focused mainly on patients’ physical conditions, rather than their emotional needs (U) | ||
| District nurse emotionally supportive (U) | ||
| Felt that their end-of-life wishes to receive care at home were being honoured (U) |
U, unequivocal; GP, general practitioner; HCNs, health care nurses.