has been stressful because I’m trying to sell one house and renovate the other . .. and I’ve got my husband. He’s had prostate cancer and had the operation but it’s rearing its ugly head again’ (Marie, daughter).
‘We’ve had Mum in respite and looking for a place where both of them can go together’ (Natalie, daughter).
Many of the participants spent a considerable amount of time in the facility while their relative was an inpatient, with the majority of those interviewed visiting most days. The amenities at this facility include a self-serve tea bay, a lounge shared with the patients, and a secure garden area. However, it was raised that this was inadequate for family carers who spent long periods of time visiting.
‘. ..It would be great to have a little café .. . I could take Dad there and he could have a cappuccino . .. It’s a nui- sance too if I am here over lunchtime because there’s nowhere to buy a sandwich’ (Natalie, daughter).
‘I think it would make it easier if there was a bit of a café where you could buy something because I’ve been coming in at 10 o’clock and not leaving until three o’clock. Today I brought in a banana.. . but I just want to be with him because he’s lonely’ (Patricia, wife).
Decision-making and discharge planning
The participants reported a variable amount of involve- ment in discharge planning discussions. Some participants reported that they were not given the opportunity to con- tribute to care decisions, however not all participants saw this as a negative, considering that the health care team were more qualified to make the decisions than the family caregivers:
I don’t think it’s really consulting me. It’s informing me what’s going on. But I feel they’re the ones that know best anyway. And I’m happy with what they’ve done so far’ (Caroline, daughter).
‘They said she was going to be discharged on Wednesday or today. Nobody actually told me that wasn’t going to happen. .. I had to have my own conclusion about that’ (Rhoda, daughter).
Decision-making by the family member on behalf of their relative was approached with ease by some participants and trepidation by others depending on the closeness of the rela- tionship, whether or not the wishes of the relative were known, and the support for the decision-maker from other family members.
‘I feel ok. Mum trusts me .. . and I’ve explained to her what’s happened and she said yes.. .Oh, I have to think about it you know, but is it a problem? No.’ (Marie, daugh- ter).
Two of the participants who were comfortable that they knew what decisions their spouse would like them to make, had subsequent conflict with their adult children about the decision which caused additional stress.
‘We’ve discussed where we want to go when we pass away . .. but you don’t even think of discussing those sorts
of things (resuscitation). And unbeknownst to my kids I said to the doctor ‘‘I want you to do everything humanly possible to save my husband’’’ (Patricia, wife).
‘None of them (the adult children) have spoken to me since.. . But I knew not to thump him or not to bring him back to life if it was going to damage him. .. I know what his wishes are. He never wants to be a vegie’ (Jan, wife).
Discussion
This study sought to explore the experience of the family caregivers at a sub-acute GEM facility in outer metropolitan Melbourne while their relative was an inpatient, particularly in regard to communication with the clinical team, involve- ment in care decisions and discharge planning discussions. Findings from this study confirm that the relationship between the family caregiver and the clinical team is greatly valued by the families and contributes to improved satisfac- tion with care.
Despite a robust interdisciplinary care programme which supports an interprofessional approach to the delivery of person-centred care, a number of the participants reported a poor experience of communication with the clinical team and there is likely to be a range of reasons for this. It is probable that some clinicians have superior communication skills and may have greater capability in this area, whereas less experienced staff may not have as much expertise in communication or time-management to adequately manage this aspect of their role (Walker & Dewar, 2001); however these issues were not directly investigated in this study. The documentation associated with the interdisciplinary care programme is audited regularly for compliance. The allo- cation of a KCP is aimed at ensuring a consistent message from the same health professional; but comprehensive and completed documentation does not necessarily ensure that the tasks have been achieved and this would need to be investigated further to ascertain the reasons behind the dis- parity. Whilst nurses may be most intimately familiar with a patient’s day-to-day needs, their lack of involvement and participation in the KCP role meant that families/carers did not regard them as a source of information.
There was a variable level of comfort expressed by the participants in regard to decision-making on behalf of their relative. Those who felt they had a close relationship and a good understanding of their relative’s wishes were more comfortable in the role of surrogate decision-maker; however two participants reported family conflict made decision-making more difficult and complex. This may, in some instances have to do with the changing dynamics of decision-making in a family where the parents are becoming older and less able (Qualls, 2000). Family members may have a long history of dysfunctional relationships with each other; the details of which are largely beyond the concern of the team treating their relative (Haesler et al., 2010). However emotional support and empathy for the family is important, and decision-making must be handled sensitively to ensure that opportunities for conflict are minimized (Popejoy, 2011) and the outcome for the patient is optimal (Winter & Parks, 2008).
All of the participants expressed their need for reliable consistent communication from the treating team, and those
has been stressful because I’m trying to sell one house and renovate the other . .. and I’ve got my husband. He’s had prostate cancer and had the operation but it’s rearing its ugly head again’ (Marie, daughter).
‘We’ve had Mum in respite and looking for a place where both of them can go together’ (Natalie, daughter).
Many of the participants spent a considerable amount of time in the facility while their relative was an inpatient, with the majority of those interviewed visiting most days. The amenities at this facility include a self-serve tea bay, a lounge shared with the patients, and a secure garden area. However, it was raised that this was inadequate for family carers who spent long periods of time visiting.
‘. ..It would be great to have a little café .. . I could take Dad there and he could have a cappuccino . .. It’s a nui- sance too if I am here over lunchtime because there’s nowhere to buy a sandwich’ (Natalie, daughter).
‘I think it would make it easier if there was a bit of a café where you could buy something because I’ve been coming in at 10 o’clock and not leaving until three o’clock. Today I brought in a banana.. . but I just want to be with him because he’s lonely’ (Patricia, wife).
Decision-making and discharge planning
The participants reported a variable amount of involve- ment in discharge planning discussions. Some participants reported that they were not given the opportunity to con- tribute to care decisions, however not all participants saw this as a negative, considering that the health care team were more qualified to make the decisions than the family caregivers:
I don’t think it’s really consulting me. It’s informing me what’s going on. But I feel they’re the ones that know best anyway. And I’m happy with what they’ve done so far’ (Caroline, daughter).
‘They said she was going to be discharged on Wednesday or today. Nobody actually told me that wasn’t going to happen. .. I had to have my own conclusion about that’ (Rhoda, daughter).
Decision-making by the family member on behalf of their relative was approached with ease by some participants and trepidation by others depending on the closeness of the rela- tionship, whether or not the wishes of the relative were known, and the support for the decision-maker from other family members.
‘I feel ok. Mum trusts me .. . and I’ve explained to her what’s happened and she said yes.. .Oh, I have to think about it you know, but is it a problem? No.’ (Marie, daugh- ter).
Two of the participants who were comfortable that they knew what decisions their spouse would like them to make, had subsequent conflict with their adult children about the decision which caused additional stress.
‘We’ve discussed where we want to go when we pass away . .. but you don’t even think of discussing those sorts
of things (resuscitation). And unbeknownst to my kids I said to the doctor ‘‘I want you to do everything humanly possible to save my husband’’’ (Patricia, wife).
‘None of them (the adult children) have spoken to me since.. . But I knew not to thump him or not to bring him back to life if it was going to damage him. .. I know what his wishes are. He never wants to be a vegie’ (Jan, wife).
Discussion
This study sought to explore the experience of the family caregivers at a sub-acute GEM facility in outer metropolitan Melbourne while their relative was an inpatient, particularly in regard to communication with the clinical team, involve- ment in care decisions and discharge planning discussions. Findings from this study confirm that the relationship between the family caregiver and the clinical team is greatly valued by the families and contributes to improved satisfac- tion with care.
Despite a robust interdisciplinary care programme which supports an interprofessional approach to the delivery of person-centred care, a number of the participants reported a poor experience of communication with the clinical team and there is likely to be a range of reasons for this. It is probable that some clinicians have superior communication skills and may have greater capability in this area, whereas less experienced staff may not have as much expertise in communication or time-management to adequately manage this aspect of their role (Walker & Dewar, 2001); however these issues were not directly investigated in this study. The documentation associated with the interdisciplinary care programme is audited regularly for compliance. The allo- cation of a KCP is aimed at ensuring a consistent message from the same health professional; but comprehensive and completed documentation does not necessarily ensure that the tasks have been achieved and this would need to be investigated further to ascertain the reasons behind the dis- parity. Whilst nurses may be most intimately familiar with a patient’s day-to-day needs, their lack of involvement and participation in the KCP role meant that families/carers did not regard them as a source of information.
There was a variable level of comfort expressed by the participants in regard to decision-making on behalf of their relative. Those who felt they had a close relationship and a good understanding of their relative’s wishes were more comfortable in the role of surrogate decision-maker; however two participants reported family conflict made decision-making more difficult and complex. This may, in some instances have to do with the changing dynamics of decision-making in a family where the parents are becoming older and less able (Qualls, 2000). Family members may have a long history of dysfunctional relationships with each other; the details of which are largely beyond the concern of the team treating their relative (Haesler et al., 2010). However emotional support and empathy for the family is important, and decision-making must be handled sensitively to ensure that opportunities for conflict are minimized (Popejoy, 2011) and the outcome for the patient is optimal (Winter & Parks, 2008).
All of the participants expressed their need for reliable consistent communication from the treating team, and those
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