Absolutely fabulous But are we? Carers perspectives on satisfaction with a palliative homecare service

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1 Collegian (2009) 16, available at Absolutely fabulous But are we? Carers perspectives on satisfaction with a palliative homecare service Lera O Connor, RN, MPH a,b, Anne Gardner, RN, CritCareCert, MPH, PhD, MRCNA c,, Lynne Millar, BA(Psych Hons) c, Peter Bennett, RN, CritCareCert, BBus(Admin) d a Lancaster University, England, United Kingdom b Cabrini-Deakin Centre for Nursing Research & RN Inpatient Palliative Care Unit, Cabrini Palliative Care Service, Victoria, Australia c James Cook University & Townsville Health Service District, Queensland, Australia d Cabrini Palliative Care Service, Victoria, Australia Received 13 November 2008; received in revised form 19 March 2009; accepted 28 April 2009 KEYWORDS Nurses; Mixed methods; Focus groups; Community; Palliative homecare; Carer satisfaction Summary People with terminal diagnoses are increasingly encouraged to stay at home for the trajectory of their illness. Consequently, relatives and friends are progressively undertaking the informal carer role more frequently in conjunction with formal palliative care teams. Although there is international literature on the efficacy of and satisfaction with publicly funded palliative homecare, to date, there is scant literature reporting satisfaction with privately funded palliative homecare especially in Australia. Survey and focus group methods were used to explore carers levels of satisfaction with a private Australian palliative homecare service and to uncover unmet carer needs. There were 300 (41.7%) responses to the survey. Three focus groups were conducted, separately comprising current carers, past carers and palliative homecare staff. While there was a high level of satisfaction with the service generally, carers identified a lack of knowledge about aspects of the illness and treatment course. A desire to have time with nursing staff independent of the patient, including continued contact after the death of the patient, was also expressed. Themes relating to service delivery concerned lack of continuity of attending nursing staff and a perceived inadequate number of service visits. These findings were similar to results reported in the literature for publicly funded services. Therefore interventions used in the public sector to meet carer needs are likely to be successful if applied in the private sector Royal College of Nursing, Australia. Published by Elsevier Australia (a division of Reed International Books Australia Pty Ltd). All rights reserved. Corresponding author at: IMB 105, 1st Floor, The Townsville Hospital, PO Box 670, Townsville, Queensland 4814, Australia. Tel.: ; fax: address: anne.gardner@jcu.edu.au (A. Gardner) /$ see front matter 2009 Royal College of Nursing, Australia. Published by Elsevier Australia (a division of Reed International Books Australia Pty Ltd). All rights reserved. doi: /j.colegn

2 202 L. O Connor et al. Introduction Increasingly in Australia and internationally, people with incurable illnesses are encouraged to remain in their own homes for as long as possible (Commonwealth Department of Health and Aged Care, 2000; Kinsella, Cooper, Picton, & Murtagh, 1998). As a consequence, homecare services are a major component of health care delivery in palliative care. By remaining at home, the sick person s well-being is optimized and there are also financial savings for the health care provider (Aranda & Hayman-White, 2001). However, in order to remain at home during their illness and often until death, people need care from both informal caregivers and a formal palliative support team. Palliative care emphasizes symptom management and the provision of psychological support for the whole family. Palliative homecare services usually encompass a variety of support systems such as home nursing and volunteers to provide respite for carers (Palliative Care Australia, 2007; Zapart, Kenny, Hall, Servis, & Wiley, 2007). There is an increasing demand for palliative homecare services due to increasing numbers of people diagnosed with cancer in Australia (Australian Institute of Health and Welfare, 2003) and improvements in survival times for those with a malignancy (Sharpe, Butow, Smith, McConnell, & Clarke, 2005). While palliative care services do not exclusively service those with a diagnosis of cancer, the majority of palliative admissions in Australia are for the treatment of advanced malignancy (Commonwealth Department of Health and Aged Care, 2000). Background The complexities of chronic disease management and the 24-h nature of care delivery have profound impacts on informal carers in palliative care resulting in anxiety and stress (Grunfeld et al., 2004; Hudson, 2003). Carers often take on the caring role with good intentions but generally without knowledge or experience of the role, thus finding it overwhelming at times (Aranda & Hayman-White, 2001). Carers may find that they are either unprepared or under prepared for the tasks required and for the psychological and physiological effects of such caring (Hudson, Aranda, & McMurray, 2002). The demands of the caring role can lead to ill health in carers that, as a consequence, can impact on their own quality of life as well as the quality of care provided to the person for whom they are caring (Hendrix & Ray, 2006). Therefore it is important that carers are well cared for themselves. The needs of patients are addressed directly by the service providers, however the needs of carers may be overlooked for a variety of reasons (Aranda & Hayman-White, 2001; Grande, Todd, Barclay, & Farquhar, 2000). There is variation in the literature regarding carer satisfaction with homecare services, with results dependant on the construct measured. Many studies that measured satisfaction with service provision in palliative care consistently reported high levels of carer satisfaction (Fakhoury, McCarthy, & Addington-Hall, 1996; Given, Given, & Kozachik, 2001). However other researchers found contrasting results when carers were surveyed about their own needs (Harding & Higginson, 2003). Some studies highlighted the unmet needs of carers in relation to education on drug use and side-effects (Aranda et al., 2004; Hudson et al., 2002; Morris & Thomas, 2002) and information provision (Lecouturier, Jacoby, Bradshaw, Lovel, & Eccles, 1999), and these perceived deficits led to carer dissatisfaction with the service. In order to minimize dissatisfaction and maximize satisfaction, homecare services need to not only deliver a quality service to the patient but also identify and meet the needs of carers. There have been investigations both in Australia and globally into unmet carer needs in the public health sphere but similar investigations into privately funded palliative care services have not been reported. It is important that as palliative homecare expands all service models are studied and the results reported. The palliative care service discussed in this paper is part of an Australian privately funded, metropolitan, multi-site health care organisation. Since 2002, postal satisfaction surveys were distributed to all carers 6 weeks after the death of patients who died whilst clients of the service. Ad hoc collation of the survey results had shown that results were consistent with published literature reporting mainly positive results from patient satisfaction surveys. The service manager requested a formal evaluation of survey findings to provide a thorough understanding of carer satisfaction with the current service and to identify any unmet needs of those whose family member had received home-based palliative care. Given the well-documented lack of sensitivity of patient satisfaction surveys, focus group interviews were also planned as many carers had indicated a willingness to be contacted again. As an adjunct, it was anticipated that a more appropriate method of evaluating carer satisfaction might emerge. Aim of the study The aim of this project was to explore carers levels of satisfaction with a palliative homecare service. The specific questions that guided the project were: What is the level of carer satisfaction with the palliative homecare service? What are the unmet needs, if any, for the carer of a person receiving palliative homecare services? How can unmet needs be serviced within current or potential palliative homecare service best practice? The first question would be answered by analysis of survey results. The second question would be answered by analysis of survey results and in depth exploration using findings from carer focus groups. The third question would be answered by triangulation of data from staff and carer focus groups. Method Design The study was conducted using an exploratory, descriptive design, with both quantitative and qualitative data collected. Data from previously completed surveys were

3 Carer satisfaction with palliative homecare 203 analysed (these data were primarily quantitative). Focus groups were conducted with groups comprising past carers, current carers and current homecare nurses. Two contrasting carer focus groups were convened as it was anticipated that each would provide a unique contribution. It was reasoned that the current carers views may have been clearer because of the immediacy of the situation and influenced by strong emotions related to current caring. In contrast, memories of past carers may have been selectively positive but may be more detached. The contrasting perspectives would provide a more complete picture of the caring trajectory. Similarly it was expected that the staff focus group would add another perspective of the carers needs as well as potential practical solutions. Mixed methodology is a useful approach when answering complex questions because each method can contribute to convergent validity thus ensuring robustness of findings. This is especially true in the case of self-report satisfaction surveys where there is potential for recall bias and where respondents may be influenced by perceptions of social desirability. Population and sample The palliative care service was part of an Australian privately funded, metropolitan, multi-site health care organisation primarily serving people with advanced cancer. The palliative care service component comprised an acute, short-stay, 22-bed inpatient unit and a homecare service providing 24-h cover for people living within a 15 km radius of the hospital. Approximately 95% of the patients admitted to the service had a diagnosis of advanced cancer. The target population for this research was all informal carers of patients who had used or were using the palliative homecare team (survey and focus groups) and all homecare staff members employed at the time of the study (focus groups only). Both carers and homecare staff in the focus groups represented self-selected, purposive, non-probability samples. Postal survey Of the 720 past carers who received a satisfaction survey within the 5 years prior to data analysis, 300 (41.7%) returned completed surveys, representing 290 family members, five friends and another five where the relationships of the carer to the patient were unstated. Focus groups Two carer focus groups were convened: one comprising past carers and one of current carers. Of twelve past carers initially contacted, nine verbally agreed to participate in the focus group, and seven people (58.3%) attended on the day. In addition, 50 carers who were current users of the homecare service were invited to join a focus group; three (1.5%) agreed and attended. Of the carers who did not participate many cited caring as the reason. Both focus groups comprised participants aged over 18 years with a mix of males and females. Due to the uniqueness of the service and the small number of participants there is no further reporting of demographic details. A focus group of current homecare staff members was also convened. At the time of the study the service comprised nine staff members (including administrative support personnel), of whom five nurses (55.5%) agreed and attended. Tools Postal survey The survey comprised three sections. The first section of the survey requested general information, such as the age of the patient and the carer s relationship to them, that is, family member or friend; the second section explored carer satisfaction with the admission process such as adequacy of admission information, and the third explored carer satisfaction with the delivery of care. The survey comprised some questions requiring dichotomous responses and some using a 5-point Likert scale, with responses ranging from always to never. The first and third sections provided space for additional written comments. Focus group questions A template with open ended questions and prompts was developed from carer comments on the returned postal surveys and relevant items in the literature. The questionnaire was designed primarily to elicit information about deficiencies and suggested improvements to the homecare service. This questionnaire was used to guide both the past and current carer focus groups (see Table 1). The focus group for current homecare staff was convened specifically to discuss the perceptions of carer needs and the applicability of any suggestions to improve the service, raised in the two carer focus groups. Furthermore, possible solutions to problems confronted by carers as identified in the literature were mooted. The open questions and prompts, therefore, reflected these issues. Procedure Ethical issues Both the hospital and university human research ethics committees granted approval for the study. Participation was voluntary and written consent was obtained prior to engagement in focus groups. Minimal demographic data was collected at the beginning of each focus group and no names were recorded in transcriptions. A motion of confidentiality was obtained at the beginning of each discussion. Furthermore, the two research team members not responsible for direct clinical care conducted the focus groups and undertook initial data analysis. For reports and publication, data were aggregated or otherwise de-identified, providing anonymity for participants. Postal survey A reply-paid postal survey, developed specifically for the homecare service, was routinely sent to all those nominated as next of kin on the medical record 6 weeks after the death of the patient. Ethical approval included permission to access completed surveys.

4 204 L. O Connor et al. Table 1 Question Prompts Question and prompts for the carers focus groups....[we are] interested in the views of current and past carers with respect to the services provided by... We are also interested in your opinion of useful and relevant services that are not currently offered.... We are well aware of the strengths of our service.... We are more concerned with investigating any areas of the service that, in your opinion, may not be completely satisfactory. We would also like to explore any needs that you felt were unmet during your time as a carer. Unmet needs include any needs that you felt were relevant to palliative homecare and should or could have been addressed by the service. Please tell us about your needs as a carer that weren t met but could have expected to be met by palliative homecare? Personal hygiene washing, showering, etc. Provision of appropriate equipment adequacy and timeliness Technical tasks dressings, injections, etc. Drugs and medications administration, side effects, addiction, etc. Psychological effects of caring Carer well-being and health Death and dying information about body changes leading to death, e.g. loss of consciousness, and what actually happens to the body as it dies, e.g. funeral arrangements Care for the carer after death Reasons why you would not recommend the service Focus groups The two carer focus groups were recruited using different procedures. The past carers were recruited by an experienced research assistant employed by the university under the supervision of the senior academic. The research assistant telephoned past carers who had previously indicated on the postal survey that they would be willing to participate in further research. The research assistant called the carers beginning with the latest nominees and continuing until nine past carers verbally consented to participate in the focus group. A plain language statement was posted to past carers who agreed to participate and telephone contact was made 2 days prior to the focus group to reconfirm intent to attend. Current carers were invited to participate in the focus group through mailed information. The information contained an invitation to participate, details of the focus group and a plain language statement. Any carer who wished to participate contacted the research team to register their interest. These carers were also contacted again 2 days prior to the focus group to reconfirm intent to attend. Both carer focus groups were held in a meeting room within the inpatient unit and reimbursement for taxi expenses was offered. Consent was obtained from all participants prior to the commencement of the discussions. Carers were informed that no adverse effects from participation were anticipated but an accredited bereavement counsellor was available if required. Each of the staff members within the homecare team was invited to attend the focus group using printed information distributed via the internal mail system. Staff received an invitation with details of the focus group and a Plain Language Statement. Any staff member who wished to participate contacted the research team to register their interest. The focus groups were held in the staff room at a time suitable to all staff. Data analysis and management Data from the survey were collected for the period Quantitative data from the surveys and focus groups were analysed using summative descriptive statistics with the Statistical Package for the Social Sciences (SPSS) Version Additional written comments relevant to the aims of the project were tabulated to identify potential prompts for the focus groups. All focus groups were audio taped. The tapes were then transcribed exclusive of names. The resulting transcripts were sorted, coded and analysed using content analysis. Using thematic analysis leads to the generation of a number of data categories that may have value for generating new knowledge in this area (Jacelon & O Dell, 2005). To compare findings from the carers and staff and to improve the validity of the data, the findings from both carers groups and the staff group were triangulated (Endacott, 2005). Concordance and disparity between the groups in relation to the major themes was identified. To ensure intercoder consistency, two researchers conducted data analysis independently to determine the themes, the results then compared and scrutinized. Analysis continued until concordance was reached. These findings were then compared with research findings in the published literature. Categories were identified and saturation reached quickly, as there was a high level of concordance between the data from both the carer focus groups. The categories were then grouped into two themes. Thus, because of data concordance and the vulnerability of the study population, the researchers terminated any further focus group recruitment. Results The results are presented in three sections. In the first section, we report on findings from 5 years postal satisfaction survey data from carers after the death of the person receiving palliative care. In the second section we present findings from the carer and staff focus groups. The third section summarises potential solutions that were discussed. Survey results From the 300 returned surveys, there were limited demographic data on the patients and carers, although the majority of patients cared for were described as aged 61

5 Carer satisfaction with palliative homecare 205 years (82.7%) and over and the majority of carers were family members. The results of quantitative survey data were overwhelmingly positive. Almost all carers (99.1%, n = 293) expressed overall satisfaction with the admission processes, and over 98% (n = 300) of carers were either always (86.8%) or often (11.5%) satisfied with each aspect of the delivery of care. Only two carers reported they were rarely or never involved in care planning and were not provided with adequate information. Almost all carers (99.7%, n = 300) felt comfortable with the staff delivering care and felt their needs were understood. Carers responded that the service always met their expectations in 86.7% (n = 260) of cases, while 9.7% (n = 29) felt it often met their expectations. The remaining 3.7% (n = 11) offered no response. All carers except one would recommend the service to others. The majority (85.7%, n = 234) responded that links were provided to other services and in most cases (97.2%, n = 280) homecare enabled the person being cared for to remain at home for as long as possible. Analysis of additional free text comments provided on the survey suggested that, while the overall satisfaction with the service was good, there were a number of areas where comments contrasted with the quantitative survey data and carers expressed some reservations. Examining data relevant to our study questions, 15 negative comments were received out of a total of 311 comments. These comments related to service delivery (10 out of 184 comments) and the provision of information (5 out of 18 comments). In summary, in the survey the majority of carers expressed a high level of satisfaction with the homecare service. However, analysis of additional comments provided by carers, in conjunction with published research findings, enabled focus group questions to be targeted at areas where the service might be improved. Focus group results The carers repeated the primarily positive perception of the service and this aspect is not reported further. When encouraged to identify areas of need that were not met, several sub-themes were identified. These were then grouped into two main themes related to difficulties carers encountered when caring for a person with advanced cancer at home. These were the personal difficulties of being a carer and limitations of service provision. The primary data source was the carer focus groups. The same sub-themes were identified from the nurses focus group but nurses sometimes perceived their role differently. Personal difficulties of being a carer The most strongly identified sub-theme was that caring for a person with advanced cancer requires patience and understanding (comprehension as well as empathy) of what the patient is going through and is physically and emotionally draining: I think it would be nice if I didn t always have to be so efficient and focused and organized (carer). To be understanding is very difficult if you don t understand what the person is going through (carer). Often...patients are admitted here in [inpatient service] because of that reason, carers just get exhausted (staff). A second sub-theme was the need to share the burden with another person who had undergone a similar experience: Would [have] been good had a carer who had been caring came along and sat down with me, gone though the experience and would come and sit down have a cup of tea and say ok fine this, just talk you through it (carer). The experience of other people in the past can help you come to grips with the situation and understand what you re in for in the long haul (carer). A perceived lack of knowledge about both the theoretical and practical aspects of cancer care also emerged:...i knew nothing about cancer and terminal illness and chemotherapy and cocktail of drugs (carer). That s a lot to come to terms (terminal diagnosis) with and then I go in with this team that are going to be coming in. Just the emotional state they are in that don t filter through (staff). Medication management was a particular area of concern: When they [medications] changed it was hard (carer). That discharge medication chart is quite shocking (staff). It would be fantastic if you could go through medications with the carer. That s part of our key role (staff). Limitations of service provision There were two service sub-themes: lack of continuity and individual time with staff. From the carers perspective, there was sometimes a perceived lack of continuity of attending nursing staff. The staff acknowledged that some carers have difficulties: One of the things I think [name] found difficult, my friend that I cared for, was somebody new coming in every time (carer). Some people maybe be happy with [seeing different members of the team] but there are others that find it difficult (staff). Carers also wanted individual time with staff, independent of the patient, to discuss patient needs and receive information and support. I find it would be really helpful perhaps to sometimes have time with the nurses separately...(carer) If I could give more time to the carer in that first meeting, introducing the team, explaining what the team does (staff). Included in this sub-theme was a sense that the service was there for support of the patient rather than the carer: Nurses are here to look after medication. I never really felt... it was our right to look for them to support us (carer).

6 206 L. O Connor et al. Table 2 Disparity between carers and nurses service expectations. Carers expectations The service is patient-centred Time alone with nurses would be helpful Continuity of nurses beneficial Bereavement support should be provided by nurses Nurses expectations The service is there to meet the needs of patients and carers Time alone with nurses not recognized as a need Attachment to certain staff members inevitable Bereavement support should be provided by pastoral care workers This need for individual time with homecare staff included contact after the patient died: Even just a phone call not a visit [after death of patient]. They say next month you might feel like this (carer). A relationship has built up [between palliative care staff and patient/carers]. I think they do want to see someone from the team (staff). I ve recently had a few they leave messages on your answering machines and they want you to phone. You can t do that [speak to the carers after the patient s death]. (staff). Both carer and staff focus group participants were able to suggest possible interventions that would address the needs that had been raised in discussion. Potential solutions Carers gave primarily information and support-based solutions: improved access to information on the disease trajectory and medications specific to the person being cared for; improved knowledge in areas such as the recognition and support of a person with pain; and provision of a means for contact with other carers and staff away from the person being cared for. Staff also recognized the need for greater access to information and improved after death service: carers have knowledge deficits, especially in relation to medication management; carers require reassurance about their personal right for support from the service and the important role they play in managing a person successfully at home, and; carers need ongoing support from the palliative homecare team after the death of the patient. The same sub-themes were identified from the both the carers and nurses focus groups but nurses and carers differed in their expectations of the scope of palliative homecare service (see Table 2). Most notably, some nurses argued that others, such as pastoral care workers, should provide bereavement support to carers after the death of the patient. Discussion This study explored carer satisfaction with an Australian private palliative homecare service. The results concur with similar studies in the current literature, demonstrating that users of private palliative homecare service have high levels of service satisfaction but also have comparable unmet needs, especially in the areas of information and support, to those carers within the public health care system. Staff showed a good level of understanding of the needs of carers, but sometimes had different expectations to carers regarding some aspects of service provision. Findings from the satisfaction surveys indicated a very positive perception of the service, with the unmet needs of carers not apparent from the initial analysis of these surveys. Most palliative care service satisfaction data, both in this study and others, is based on surveys or interviews with carers after the patient has died (Addington-Hall & McPherson, 2001; Jansma, Schure, & de Jong, 2005) Findings from these retrospective interviews must be treated with caution as memories, especially emotionally charged ones, can be coloured by biases; people tend to attribute more positive features to choices they made in the past (Mather & Shafir, 2000). As an example, Hinton found that relatives often retrospectively underreported their own experienced anxiety whilst caring for their loved one (1996). Therefore having once made the decision to care, carers remember the positive aspects of the experience hence protecting their well being. Other noteworthy limitations to findings from self-report satisfaction surveys are floor and ceiling effects (Keppel & Wickens, 2004). The postal survey used in this study appeared to suffer from ceiling effects as most of the results were over 90%. The outcome was, therefore, reduced sensitivity in measurement of the dependent variable; that is carer satisfaction. Another problem associated with the evaluation of carer satisfaction is that most satisfaction surveys have a focus on evaluating the services currently provided. For example, the postal survey used in the current study asked how well the homecare service met the carer s expectations. However, carers expectations were not stated. In addition, carers needs are not static but change over time and may differ depending on the age and gender of the carer, and the illness trajectory of the patient (Harding & Higginson, 2003; Payne, Smith, & Dean, 1999). For these reasons, carers may experience unmet needs that remain unaddressed by nurses throughout the period of service delivery (Aspinal, Addington-Hall, Hughes, & Higginson, 2003), and these needs may remain hidden even after an evaluation of service satisfaction data. Our results reinforce findings that primarily quantitative satisfaction surveys based around service delivery do not uncover all unmet carer needs (Aspinal et al., 2003). While the surveys were overwhelmingly positive, focus group discussion identified a lack of information about cancer and medication management, and a general lack of information and carer-focused support more broadly. The focus groups highlighted disparity between the carers and staff s expectations of the service in relation to who is the focus of care for the homecare team, the role of team members and the individual support needs of carers. Identification of the focus of the homecare service has impli-

7 Carer satisfaction with palliative homecare 207 cations for the way that information is provided to carers and the way that that carer concerns are addressed during visits. Carers should feel comfortable with asking questions and seeking to have their needs met. Information about what the service can and cannot provide should be clarified and reinforced regularly throughout the caring period. Staff should explain that supporting carers is a primary focus of the service. Staff behavior should also reflect this philosophy. Carers are an integral part of the palliative care team and need to feel included. This may require formal or informal discussion and education sessions with homecare staff, as Guberman, Keefe, Fancey, and Barylak (2007) identified barriers to nurses viewing carers in the same way as patients in terms of assessment and care provision. The establishment of ongoing support groups was raised by carers as a potential intervention that could address a range of needs. Targeted carer interventions, such as attendance at support groups with others who have been through a similar experience, have previously been shown to have beneficial outcomes for carers (Harding & Higginson, 2003; Jansma et al., 2005). In a systematic review of carer interventions in cancer and palliative care, Harding and Higginson (2003) identified a number of randomized controlled trials describing group interventions solely targeted at carers. Positive outcomes included increased knowledge and enhanced psychological support. However, Jansma et al. s (2005) study found that almost 80% of carers interviewed wanted to attend a group in their own home. It is unclear from this study how many participants were receiving regular support through home visits by palliative nurses, and how many participants would actually attend a group if it was held in a venue other than their own homes. The small number of participants in the carers focus groups in this study, especially current carers, highlights the vulnerability of this group and the full time nature of the caring commitment, making attendance at support groups difficult for carers. Consideration must be given for the timing and format of meetings, and potential reimbursement for professional carers to allow informal carers time out to attend group meetings. Other worthwhile considerations include the use of real time virtual support groups or online group sessions with the palliative care provider through use of computer technology. With easy access to instant messaging, chat rooms and video conferencing, geographical isolation or the need to attend in person are no longer the problems they once were. The challenge may be more in changing carers attitudes towards prioritizing their own needs as a previous study has shown ambivalence with carers in relation to meeting their own needs (Harding & Higginson, 2003). The provision of an ongoing carers support group may meet some of the needs of carers for support and information, but not the specific, targeted information regarding the particular needs of the person for whom they are caring. Carers should be encouraged to feel empowered to ask questions and recognize they have a right to the information they need to feel confident in their caring role (Jansma et al., 2005). It is imperative for palliative homecare services to equip informal carers with information and skills thus enabling them to care with confidence. In order to assist carers in their role, palliative homecare services may need to factor carer-focused time into their visiting schedules. Finally, carers in the current project identified a need for an extension of carers support post-death of the patient. This need was acknowledged by the staff but remained unmet due to reluctance or inability of staff to engage after the death of the patient. Similarly Milberg, Olsson, Jakobsson, Olsson, and Friedrichsen (2008), in a recent study, found that approximately half the carers articulated the need for contact with staff post-death, particularly with the staff members with whom they had the most frequent contact. The carers in the Milberg et al. (2008) study felt that the follow up validated the authenticity of their emotions and afforded them permission to express those emotions. While there was some concordance between the survey and focus groups findings, the quality and range of the focus group data, especially in relation to unmet carer needs, was greater than that found in the surveys. The investigation demonstrated a need to change the method of service evaluation in this private palliative homecare service. We suggest that focus groups are a most appropriate methodology for eliciting carer needs and identifying potential interventions aimed at increasing carer support (Hamel, 2001). A prospective service evaluation using semi-structured interviews is likely to be more beneficial in identifying unmet carer needs and initiating remedial interventions. Study limitations The past focus group attendees were carers who had recently experienced the death of the person for whom they were caring. This situational factor may have introduced a systematic bias into the data. However, as the results from the three focus groups were highly concordant both with one another and with the wider literature, there appeared to be little situational influence. All carers in the study were holders of private health insurance (a requirement for admission to the service), and living in a metropolitan area, therefore they may not be reflective of all users of palliative homecare services but the result may be reflective of other privately funded palliative homecare services. As the onus for health care is transferred from the public to the private sector there needs to be more research into the similarities and differences between the two sectors. Finally, all carers were looking after a person with advanced cancer; it is unclear if these results are applicable to those carers of people with other chronic terminal illnesses. Having two researchers agree on the predominant themes from the qualitative data optimized reliability and validity of the results. The small number of current carer focus group participants ordinarily limits the external validity of these findings. However, in this study there was close concordance between the current carers issues identified and the carer issues reported in the literature, enhancing validity of the results. Recommendations The following recommendations are based on our study findings as well as those arising from the literature. 1. Discontinue the current retrospective carer evaluation of the service.

8 208 L. O Connor et al. 2. Initiate and trial a prospective service evaluation for carers. 3. Develop specific and clear information for carers about the homecare service, building on existing service information available to patients and carers and highlighting what the service does and does not provide. 4. Investigate the issue of ongoing bereavement support for carers once the patient has died. 5. Test the provision of an ongoing carer support group. Conclusion In conclusion, this study has shown a high level of carer satisfaction with a private palliative homecare service in metropolitan Australia, but has identified areas of unmet carer needs, especially in relation to the provision of information and the need for increased professional support. These findings are very similar to findings from similar research into publicly funded palliative homecare services. It appears that the burden of caring impacts equally on all groups of people and interventions that are successful in the public sphere will also be successful in the private sphere. Potential conflict of interest A potential conflict of interest existed because two members of the team (LO & PB) were also directly involved in service provision at the Cabrini Palliative Care Service at the time of the study. These research team members were excluded from the recruiting process, management of the focus groups and the initial data analyses with access to aggregated and de-identified data only. Acknowledgements The authors wish to acknowledge the financial support for this project provided by a Cabrini Health Peter Meese Seeding Grant in 2005 and a Peter Meese Research Grant in All authors were based at Cabrini Health at the time of the project with the first, second and third authors attached to the Deakin-Cabrini Centre for Nursing Research. 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