From the analysis of the data, two superordinate themes and six sub themes were developed (see Table
1). The superordinate theme “The Big Picture” covered broad issues such as the availability of respite in Alice Springs, carer burden resulting from a respite shortage, and external factors affecting the establishment of the program and impacting on patients and carers. Many of these issues crossover with the issue of remoteness. “Making the Service Work” covers organisational considerations involved in the establishment and ongoing operation of the program that affected the experience of patients and carers.
The big picture
Respite shortage in Alice Springs
This theme emerged through a strong consensus among carers, stakeholders, and referrers that there are very few options for respite in Alice Springs. As the care needs of individuals increased, the need for respite increased, but options reduced. Participants spoke of the general lack of options for respite in Alice Springs. Carers of patients with high and increasing care needs spoke of being overburdened with no simple option for respite. Available respite in Alice Springs generally involves being placed on long waiting lists. Obtaining respite for high care patients is difficult and at times impossible. Referrers found that patients were misusing services such as Alice Springs Hospital in order to have basic needs or primary health care needs met, and the lack of options for these people perpetuated this cycle.
… there have been less and less options for him, so to have this at a point where his care needs have never been so high is incredible (C1)
Referrers and stakeholders spoke of patients with chronic and complex conditions who are not strictly palliative, not fitting into the criteria for many services, and “slipping through the cracks”. Consequently the health status and symptom management of these people was poor. Marginalised patients such as those living in town camps or Indigenous people generally who were requiring the respite service tended to be placed in situations of risk when no option for respite was available including being left at home alone. Moreover, carers often had difficulty meeting the basic needs of patients due to issues relating to poverty such as transport, overcrowding, low income, and poor hygiene. The introduction of the respite service meant that these patients now have a safe place to go during the day, they can have their health care and personal care needs met, and services have a point of contact to assist with coordinating patients’ health care needs.
Stuck at home
Overwhelmingly, participants discussed the issues of both carers being housebound due to their caring responsibilities and patients being housebound due to a lack of suitable services available in Alice Springs to provide relief. Many emphasised the burden experienced by carers who had loved ones with high care needs. In most cases high care patients were difficult to transport and therefore carers required support to do their jobs outside of the home. Issues of isolation, quality of life, and social and emotional wellbeing were all identified as problems for both carers and patients as a result of being “stuck at home”.
I couldn’t take him anywhere, we used to up until Christmas … I used to teach night classes and I used to bring him, I actually enrolled him, he didn’t do anything he wasn’t able to, I needed to have him there because I didn’t have anyone to care for him (C1)
… it’s a never ending workforce, the only time we can relax is when she’s asleep (C2)
Patients commented that, if the respite service was not available, they would be sitting at home on their own. Indigenous patients from town camps were more likely to report this.
I’d just be sittin’ down at home (P2)
… no-one would be at home, my wife would be working … she worry, that’s why she wanted to find a place where I can stay for the day (P2)
Carers reported that as their loved ones’ care needs increased, their options for respite declined.
As his mobility has deteriorated, the continence issues, the um swallowing stuff, because now he’s on the highest grade, all things are thickened into pudding thickness. Um so all of this has happened now there have been less and less options for him (C1)
Respite provides relief
Generally, participants expressed satisfaction and relief that the service was now available. Referrers were strongly encouraging of the service including the quality of the service and the facility as well as the flexibility of the staff to meet the needs of complex patients. Carers reported that the introduction of the respite service gave them an option for respite, where their options for respite were declining due to their loved ones’ increasing care needs. Exhaustion, isolation, loneliness, and anxiety were identified as issues for carers and patients before the introduction of the respite house.
I wasn’t getting enough of a break, and there just didn’t seem to be any way to get a break, it was just putting one foot in front of the other, he was housebound, I was largely housebound, um, yeah, if I did get a break, I was often so tired that I’d just go into my room and sleep, so yeah, although I was very grateful for it, it wasn’t enough (C1)
I always think that when he’s home (alone) I always think he might fall down or walk the wrong way (C3)
The introduction of the respite house has improved the quality of life and emotional wellbeing among carers and patients.
It’s given me a life back … Well I feel a lot freer, a lot more rested, I have more options, more time to do stuff, um as we are getting more into the routine of it, I guess I’m counting on it more (C1)
It makes me happy that he’s gone there, so I can have time to do some sewing and things for me you know (C3)
I’ve used up all my holidays, all my long service, all my sick, I’m looking after her three days per week, then I can only work two days per week. Now I have no back up at all as far as long service or holidays go, that’s all gone, and it was just ideal that [location] came up at the right time, yeah, it’s really excellent (C2)
All I can say is, I love coming here (P2)
Referrers reported struggling to coordinate marginalised patients with high care needs who misused services and had poorly managed chronic diseases. With the introduction of the respite service this has provided a place for complex patients to attend, have their medical and basic needs met, and at times, therapeutic needs also. Referrers reported that symptom management, medication compliance, quality of life, and service coordination had all improved for these patients, as well as an improvement in the referrers’ ability to manage these patients. The provision of a “safe place” for isolated and marginalised members of the community suffering from complex conditions was strongly emphasised as an important outcome.
[Before] he would call me four to five days of the week and he would need things like, to get to [Medical Service], his meds had run out, he needed his pain patch changed, when he was feeling unwell he would present to the emergency department at ASH at least twice per week he would be admitted and it would usually be pain related (R2)
[After] he just took to it like a duck to water really and it has just really improved the quality of his life dramatically, I think he really feels like he’s got a place there and a great purpose … to actually have somewhere where he can feel he has a meaningful role has been important for his self esteem (R2)
The benefits were enormous, he was very disengaged from the health care system when I first became involved with him, he was using the emergency department completely inappropriately, he was presenting on average three or four times per week for dressing changes and would be quite sick and get admitted and then two and three days later take his own leave before his health issues were addressed and it was a really unhealthy cycle of dependence on the hospital without actually utilising the services properly. He then was supposed to be seen by the community nurses and would often not be home when he was supposed to be seen by the community nurses or they would get there and he would tell them to go away, so they were changing his dressing irregularly so his wounds were deteriorating and he had a maggot infestation and so it was really not working well. Once we got him into a routine of going to the house three days a week it worked out really nicely. The community nurses could go to the house, they would know he would be there, he could have a shower before they’d do the dressings so was optimal conditions and once he started going to the house regularly his presentations to the emergency department dropped off so significantly, so much that he had three presentations over an eight week period, compared to three times per week before that (R1)
Making the service work
Service operation
Participants described factors that strongly influenced the day-to-day operation of the service. Many participants identified staffing as a strong contributor to the success of the program and as an important factor in the consistency of the program. Many identified that those trust relationships that were built between patients and the respite staff were an integral part of successfully engaging people with the program. Some patients felt as though they had built genuine friendships with the staff at the house.
Can I just say [staff member] and [staff member] are my friends (P1)
Problems with staffing were identified throughout the interviews as a factor that affected the consistency of the program and impacted on the service provided to patients and carers.
I think the hurdles for running the house is looking for the right people to work in there, and that’s an interesting process in itself, and you’re always going to have those problems in Alice Springs, of getting the right personalities. I know programs that have fallen over because certain people have left and the passion has left with them (S1)
… some problems we’ve been dealing with, consistent staff, you know, sick leave, you know these things happen, you know dealing with that and putting in that back up plan (S1)
Activities at the house
Participants discussed the service provided by the respite house as well as identifying things that were needed or missing. The respite house provides a service that includes day respite, transport to and from the house, provision of meals and hydration, medical needs such as wound dressings, oxygen, and management of medication. Personal care needs such as showering and washing clothes and changing pads are also provided. The provision of medical support and having a Registered Nurse employed were factors that gave carers, referrers, and patients confidence in using or attending the service.
He has on occasions needed a nebuliser, but because they have an RN on staff there they can just assess that and say right we’re gunna do this now. With his breakfast he has morning medications and they crush it and give it to him (C1)
I was completely comfortable when you know that there’s a qualified nurse there and friendly [staff member] making scones and pikelets, they make us feel really comfortable (C4)
Staff provided transport for patients to and from the house. This was identified as an important feature of the service as transport for many was identified as a barrier to attending the service. Provision of transport by other services and the taxi company were considered unreliable, and the success of getting people who did not have transport to the program, depended on the availability of the respite service to provide this transport. Transport of mobility impaired or wheelchair bound patients was not possible as the vehicle used by the respite service is not accessible for these patients, there are few wheelchair taxis available in Alice Springs, and other agencies with these facilities were not dropping off and picking up patients in time. The addition of a wheelchair bus was strongly recommended throughout the interviews. Indigenous people or those living on town camps were more likely to be dependent on transport.
Patients described their time at the house as relaxed and many simply enjoyed going to the house and sitting around, sleeping, or watching television.
When I’m sitting at home, sometimes my family they go into town, they do shopping and they leave me alone, I mean, I’m on my own, and since I came here these other people from other town camps, I know we don’t talk much, but we get together and just sit around and watch TV … These people that work here they getting to know us so we like to make sometime tell story to one another, or sometime make joke of one another, so I’m happy yeah (P2)
Some participants indicated that a schedule of activities should be created to enhance the service. Interestingly, this initiative was mainly shared by stakeholders and referrers and was not raised by patients. Patients were satisfied with the basic service that was provided.
Spirit of the service
There was an emphatic view that this service was unique in its delivery and that the staff had a strong “can do” attitude, and tended to go to great lengths to meet the needs of patients. Many felt that the service was tailor-made to the particular needs of patients, and there was a strong sense of motivation, persistence, and enthusiasm from staff, to overcome barriers for patients to get to the service.
I am just amazed that I went through all of [patient’s] care needs with [staff member] and he was not phased at all … I think we might have a solution (C1)
The service was described by many as flexible and accommodating. Referrers felt as though they could refer a wide range of patients who were not suitable for other services and the respite service would at least consider them.
Case studies
Two case studies have been included as supplements to the other qualitative data to provide a more fine-grained illustration of the impact of the respite service for people who used the service regularly. Two male participants were chosen as case studies because of the complexity of their situations as well as their different experiences engaging with the facility. One participant engaged readily with the program whereas the other participant was more reluctant to engage initially.
Case study one
Rob (pseudonym) is a 62 year old Indigenous man living on a town camp in Alice Springs. Rob suffers from a slowly progressing carcinoma with bone metastases. He is originally from a community south of Alice Springs. Prior to receiving his diagnosis he was a strong working man, however, following his diagnosis he was told he was not allowed to work. Rob lives alone and his family occasionally visit. Rob is under the care of the palliative care team.
Prior to the commencement of the respite service Rob contacted the palliative care team four to five days per week for symptom related issues. He also called an ambulance on a weekly basis for pain related issues. In the 12 months prior to the commencement of the respite service Rob had 35 attendances to the emergency department (ED), four hospital admissions, and stayed 66 days in hospital. By visiting Rob in hospital, the palliative care team found that his admissions were largely due to pain. Rob was generally isolated and would often present to the hospital just to “chat” to staff.
Following the opening of the respite service, Rob started attending on a regular basis. The respite service provided Rob transport to the house, meals, and assisted with the management of his medications. They were able to monitor any symptom related issues and coordinate care for Rob. When Rob attended the facility he would take care of the garden and assist the staff by helping to communicate the needs of other patients. He felt as though he had a genuine role in the house. In this period his ED attendances dropped to five (from 35) and he had no hospital admissions.
Attendance at the respite service reduced Rob's isolation, it provided him with connection, reduced his anxiety around his condition, and improved symptom management as well as access to primary health care support.
Case study two
Jimmy (pseudonym) is a 47 year old, homeless, Indigenous man, suffering from end stage bronchiectasis and is dependent on home oxygen. Jimmy is under the care of the palliative care team as well as other primary health care programs. Agencies involved in the care of Jimmy had problems with his care coordination as he was difficult to locate and did not present for medications or appointments. For the 12 months prior to the commencement of the respite service, Jimmy presented to the emergency department on a nightly basis for a bed to sleep in and had 74 ED presentations and 930.9 ED hours.
Initially, Jimmy was reluctant to attend the respite service, but since it opened he has attended between 3 to 5 days per week. This has enabled improved service coordination for Jimmy, and agencies involved in his care have been able to assist him with his homelessness issues. Because Jimmy’s homelessness issues have not resolved, there has not been any improvement in his ED presentations.
In the period after the respite service opened he presented to ED on 119 occasions for a total of 1841.9 h. Although Jimmy’s presentations to ED increased, his number of admissions to hospital from ED reduced from 32 to 7 after the respite service opened. Despite the increase in the usage of ED due to his issue of homelessness there was less medical intervention needed resulting in a cost saving of $50,239.56 for this patient. This suggests there may have been some improvement in Jimmy’s symptom management and that his admissions to the ward were as a result of genuine exacerbations of his illness rather than poor symptom management.
Since the commencement of the respite service, Jimmy now has his medications daily, his symptoms have improved, and during the day he has a bed to sleep in. For a period he did access hostel accommodation and, during this period, his ED presentations stopped completely. He is still homeless but now that the respite service is available to him, he sleeps in ED overnight and contacts the respite service in the morning to be picked up. Thus, Jimmy’s involvement with the respite service has improved his isolation, improved other agencies’ abilities to support him, and improved his symptom management.