583436 research-article2015
PMJ0010.1177/0269216315583436Palliative MedicineAoun et al.
Original Article
Enabling a family caregiver-led assessment of support needs in home-based palliative care: Potential translation into practice
Palliative Medicine 1–10 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315583436 pmj.sagepub.com
Samar Aoun1, Chris Toye1, Kathleen Deas1, Denise Howting1, Gail Ewing2, Gunn Grande3 and Kelli Stajduhar4
Abstract Background: Systematic assessment of family caregivers’ support needs and integrating these into service planning according to evidence-based research are vital to improving caregivers’ outcomes and their capacity to provide care at end of life. Aim: To describe the experience with and feedback of nurses on implementing a systematic assessment of support needs with family caregivers in home-based palliative care, using the Carer Support Needs Assessment Tool. Methods: This study was conducted during 2012–2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. Forty-four nurses who trialled the intervention with 233 family caregivers gave their feedback via surveys with closed- and open-ended questions (70.5% response rate). Analyses of quantitative and qualitative data were undertaken. Results: The feedback of nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice both from the family caregiver and service provider perspectives. Using the Carer Support Needs Assessment Tool was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and as identifying needs and service responses that would not otherwise have been undertaken in a timely manner. Conclusion: Our study has successfully addressed the call for alternatives to the professional assessment paradigm using the Carer Support Needs Assessment Tool approach as a caregiver-led intervention facilitated by health professionals. Integrating the Carer Support Needs Assessment Tool in existing practice is fundamental to achieving better caregiver outcomes.
Keywords Carer Support Needs Assessment Tool, palliative care, family caregivers, service provision
What is already known about the topic? •• Community practitioners should work in partnership with family caregivers •• Support based on caregivers’ ‘felt needs’ is essential to address unmet needs •• The Carer Support Needs Assessment Tool (CSNAT) was developed to systematically evaluate caregivers’ needs from their perspective What this paper adds? •• When using the CSNAT, nurses were generally comfortable with the process and perceived benefits for caregivers and for their practice.
1School
of Nursing and Midwifery, Curtin University, Perth, WA, Australia 2Centre for Family Research, University of Cambridge, Cambridge, UK 3School of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, UK 4School of Nursing and Centre on Aging, University of Victoria, Victoria, BC, Canada
Corresponding author: Samar Aoun, School of Nursing and Midwifery, Curtin University, GPO Box U1987, Perth, WA 6845, Australia. Email: [email protected]
Downloaded from pmj.sagepub.com by guest on November 18, 2015
2
Palliative Medicine •• This study required nurses to change from the professional-led approach to facilitating a caregiver-led approach •• The majority of nurses recommended embedding the CSNAT in routine practice
Implications for practice, theory or policy •• Using the CSNAT is one way to systematically evaluate caregivers’ needs from their perspective that is viewed as beneficial and achievable by nursing staff •• Such a systematic assessment can then underpin an equally systematic approach enabling more direct support to caregivers rather than just enabling the caregiver to provide care
Background To inform future planning and policies for solutions to the growing demand for family care and the associated challenges encountered by family caregivers, it is essential to integrate family caregivers’ needs into service planning.1,2 Policy makers and government and caregiving organisations in the United Kingdom, Australia and Canada stress that family caregivers’ needs should be assessed and addressed and are urgently seeking ways to ensure the ongoing capacity of family caregivers to provide care.3–6 Identifying any gaps in service provision for caregivers and sharing evidence-based research about the most effective, supportive interventions that service providers can deliver are vital to disseminating knowledge to improve outcomes for caregivers.2 Evidence suggests that good support can improve family caregivers’ psychological outcomes in the longer term.7,8 It is recommended that ongoing assessment to anticipate caregiver needs be integrated into routine palliative care rather than ‘crisis’ driven.2 However, numerous factors impede adequate assessment of family caregivers’ support needs. Service providers focus on the patient, often have limited time to undertake comprehensive assessment of family caregivers’ problems and may be reluctant to openly do so in the patient’s presence. A family caregiver’s assessment is often informal and undocumented, making family caregivers’ support needs less ‘visible’.9,10 In a recent Australian study on caregivers’ unmet needs,11 different domains of caregivers’ needs showed support based on caregivers’ ‘felt needs’ was essential to address unmet needs, rather than service providers basing caregiver support on a ‘normative needs’ assessment approach using objective measures of caregiver burden or patient health status.11 Recent research in several disease groups has also shown the importance for family caregivers to play a more pivotal role in need assessments and support programmes for the caregiver and patient,12,13 including a caregiver-led assessment process and recommending a change of attitude for service providers from ‘expert’ to an ‘enabler’, working in partnership with caregivers, acknowledging their expertise about the caring relationship.14 Increasingly, the usefulness of existing measures of caregiver burden is questioned15 and there is a call for alternatives to the professional assessment paradigm.11,16 Suitable
tools for assessment of family caregivers’ support needs in end-of-life home care are lacking,10,17 and furthermore, work from the United Kingdom18 demonstrated that family caregiver assessment undertaken by palliative home care services relies on ad hoc, non-validated tools that show little commonality in content or format. To address this gap, Ewing and Grande10 have developed and validated an evidence-based, comprehensive Carer Support Needs Assessment Tool (CSNAT) of caregivers’ support needs, as identified by the caregiver, designed in response to the need for a straightforward assessment tool for use as part of routine practice in palliative home care.9,10 Using the CSNAT requires a shift from the informal health professional-led methods of identifying caregivers’ support needs to a caregiver-led approach facilitated by the health professional,19 in other words facilitating the shift to person-centred care. This collaborative research study was initiated when the Silver Chain Hospice Care Service (SCHCS), a large organisation providing home-based specialist palliative care in Perth, Western Australia, identified a need to further address the following organisational standard: ‘The needs of the primary caregiver/s are assessed independently and are documented with supportive strategies in the plan of care’. An internal quality action plan has identified this gap against the Australian Palliative Care Standards. SCHCS identified the CSNAT as a potentially useful intervention and sought to work in partnership with the researchers in this study to test its impact and determine how its use was experienced by family caregivers and the staff. SCHCS was involved in guiding and monitoring the research procedures in their service, recruiting for the study from within their client pool and liaising with their staff regarding data collection. The overall purpose of the study was to evaluate the implementation of CSNAT in this service context through three phases: Phase 1: a stepped wedge cluster trial was used to implement the CSNAT with an intervention group using the CSNAT for identification of support needs and a control group using the service standard identification of support needs. Pre- and post-outcome measures were
Downloaded from pmj.sagepub.com by guest on November 18, 2015
3
Aoun et al. collected for the two groups. Total recruitment was 620. There was 45% attrition for both groups between baseline and follow-up mainly due to patient deaths, resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). The intervention group showed significant reduction in caregiver strain relative to controls, p = 0.018, d = 0.348.20 Phase 2: feedback on using the CSNAT was sought from 233 family caregivers in the intervention group through telephone interviews, as each completed the study.21 Phase 3: feedback on using the CSNAT was sought from 44 nurses who participated in the trial. This article reports findings from the 44 nurses in Phase 3.
Aim The aim of this article was to describe the experience with and feedback of nurses on implementing the CSNAT intervention with family caregivers in home-based palliative care.
Methodology The study was approved by the Curtin University Human Research Ethics Committee (HR 24/2011) and the Silver Chain Human Research Ethics Committee (EC App 068). At the start of the trial, nurses signed a consent form to provide their feedback at the end of the trial. All aspects of this study conformed to consolidated criteria for reporting qualitative research (COREQ) requirements.
Service context This study was conducted during 2012–2014 in three sites of the SCHCS, Australia’s largest provider of home-based palliative care. As described in Aoun et al21, the service is provided is provided by an interdisciplinary team comprising general practitioners with a special interest in palliative care, medical consultants, registrars, resident medical officers, palliative care specialist nurses, counsellors, chaplains, care assistants, social workers and volunteers, who work with the patient to control symptoms and address psychosocial needs. Typically, nurses visit patients weekly and increase visits according to client needs for care and symptom management and care assistants provide personal care visits three times per week to daily depending on patient needs. The average length of stay with the service is approximately 90 days. In relation to caregiver support prior to the study, standard practice included staff meeting with the caregiver during the client visit and discussing the caregiver needs on an informal basis. Following this discussion, the staff member would offer services and equipment that Silver Chain
is currently able to provide. These services include social work, counselling, spiritual care, personal care and inhome day respite. The service is able to access crisis respite from external organisations. The equipment that is provided free of charge includes hospital beds and pressure-relieving equipment. Some aspects of the discussion with caregivers would be documented; however, many conversations are ‘drive way’ conversations (outside of the home) and are therefore on an ad hoc basis and not documented as clients’ clinical records are currently paper based and stored in the home.
Description of intervention The CSNAT adopts a screening format, structured around 14 broad support domains. This format allows it to be brief and also comprehensive, enabling caregivers to identify the domains in which they require further support which can then be discussed with health professionals. Each item represents a core family caregiver support domain in endof-life home care, and these domains fall into two distinct groupings: those enabling the caregiver to care and those enabling more direct support for themselves.9,10 As described in Aoun et al21, the CSNAT intervention consisted of at least two visits from nurses (2–3 weeks apart) to identify and review family caregivers’ needs. The CSNAT was either self-completed by the family caregiver or completed jointly with the nurse. Family caregivers identified the domains where they needed support in general and indicated which domains were their main priorities. These priorities were then discussed with the nurse who recorded the actions taken or proposed solutions for each priority need and discussed a shared action plan. At the start of the study, family caregivers of clients newly admitted or already receiving palliative care were invited by participating nurses to take part at the first feasible opportunity during a face-to-face visit. Nurses obtained written informed consent for the study.
Description of training The training was conducted by the research team. Nurses were trained in the use of the CSNAT as a caregiverled approach for identifying and addressing caregiver needs rather than the traditional way of professional-led approach. As described in Aoun et al21,one training session of 2–3 h long was provided (mostly in groups of six to eight) at the start of data collection for the intervention. Therefore, a total of six main training sessions (two sessions for each site) were undertaken to accommodate the availability of staff. Due to the additional time pressure, training sessions were perceived to add to the nurses’ busy schedules; we were asked to keep sessions short and not so frequent. These initial training sessions were followed towards the middle of the data collection period by three refresher sessions (one session for each site) lasting 1–2 h
Downloaded from pmj.sagepub.com by guest on November 18, 2015
4
Palliative Medicine
to discuss nurses’ experiences, issues with recruiting and completing the intervention. In addition, the research team had monthly meetings with the designated champion of the project in the service (a senior clinical nurse manager) to follow progress and discuss challenges in each site. Suggestions from the research team were relayed back by the champion to the recruiting nurses during their regular weekly clinical meetings. Furthermore, nurses had daily access by phone to the advice of the research nurse, and texting was the preferred way for individual nurses to liaise with the research nurse.
Study design Data were collected through a survey consisting mostly of qualitative open-ended questions. All responses were hand-written by the respondents. When the nurses were given the option between a focus group, face-to-face interview and completing a questionnaire, they chose the latter so that they could complete the task when they most had the time to think and reflect. Additional data were obtained using closed questions with response options such as ‘yes’ or ‘no’ or a 5-point Likert scale from ‘strongly agree’ to ‘strongly disagree’. The questionnaire had three sections: feedback on the practicalities of CSNAT implementation, feedback on the impact of the CSNAT on nurses and the family caregivers and feedback on CSNAT potential routine use in the service. Questions centred around the nurses’ experience participating in CSNAT implementation; their opinion whether this assessment process was effective in eliciting caregiver concerns; whether it had affected the support provided, the benefits of or challenges compared to standard practice; whether the solutions provided were within service capacity; their suggestions for improvement and whether they would recommend the CSNAT for use in routine practice. Forty-eight Silver Chain Hospice Care nurses participated in the trial. The nurses who had gone through the experience of completing at least three CSNATs with any family caregiver were invited to complete the anonymous questionnaire (n = 44). Four nurses were excluded because they joined the study towards the end and had completed only one CSNAT. The questionnaires were delivered to each service centre in individually sealed addressed envelopes. The completed surveys were returned either by posting to the researcher in a sealed, prepaid envelope or the sealed envelope was deposited in a secure designated box at each centre collected by the researcher.
Analysis Qualitative responses were initially grouped according to the response option selected for each survey item, ensuring that the context of the comment or explanation could be
considered. These qualitative responses were then subjected to a directed content analysis22,23 in order to identify nurses’ perspectives on implementing the intervention. The coding scheme was drawn from the focus of each section of the questionnaire: after reading and re-reading the responses, words and phrases were grouped into categories independently by three co-authors, one being the research nurse coordinator who frequently liaised with the service during the study, and so was familiar with service specific terminology. Differences of opinion were resolved by discussion and by returning to the data. Exemplars help demonstrate how interpretations have been reached. Descriptive statistics, using SPSS 22, were used for quantitative data.
Results Participants Thirty-one nurses out of the 44 who participated in the trial (and completed at least three CSNATs) responded to the survey (70.5% response rate). Some of the known reasons some nurses did not respond were due to leaving the service (n = 3), or being on annual leave or sick leave (n = 4). Table 1 summarises the profile of respondents to the survey (n = 31). The majority were female; the median age was 51 years, with a median of 10 years working in palliative care and 6.5 years with Silver Chain Service. Responses from participants were grouped under six main categories: (1) the practicalities of CSNAT implementation, (2) perceived benefits to family caregivers compared to standard practice, (3) perceived benefits to nurses compared to standard practice, (4) assisting caregivers to provide care for their relative compared to assisting caregivers with support for themselves, (5) other encountered issues and (6) integration into standard practice. Quantitative findings were included in relevant categories to support the qualitative findings.
Practicalities of CSNAT implementation Participants indicated that they introduced the tool by making the caregiver aware that it was to help focus on them and their needs: I told the caregiver that the CSNAT project was to give them a voice. Also, hopefully to get more support for caregivers (P06). Nurses varied in the way that they described carrying out the assessment process. About half of the participants (45%) described a flexible approach, indicating that some caregivers needed help to complete the CSNATs whereas others did not. Some caregivers were generally viewed as needing help, but there were also other considerations, as noted in this comment: Depending on age and understanding of caregiver and language ability (P12). Twelve participants (39%) said that they generally asked family caregivers to complete the tool themselves to
Downloaded from pmj.sagepub.com by guest on November 18, 2015
5
Aoun et al. Table 1. Profile of nurses who responded to the survey (n = 31). Gender Male Female Age (years) Median Range Length of time in palliative care (years) Median Range Length of time with Silver Chain (years) Median Range Number of completed CSNATs Median Range
3 28 51.00 29–65 10.00 1–26 6.50 0.7–25 7.0 3–19
CSNAT: Carer Support Needs Assessment Tool.
allow caregivers to have more time to consider each question (P09) or to allow the nurse more time with the client: Would get caregiver to complete assessment whilst I was talking with client (P22). Self-assessment was sometimes followed or accompanied by discussion to provide or seek clarification if needed, as indicated by Participant 5: I chose to let the participant go through the list at their own pace however I carefully explained the preface to each question with ‘Do you need more help with …’. I was with the participant but not reading out each line. (P05)
A minority (13%) reported consistently reading out all the CSNAT questions to the caregivers, providing the rationale that caregivers were overloaded and might find completing the CSNAT burdensome. Participant 4 stated: Very few people enjoy filling out forms so I decided to help with this process (P04). When establishing support priorities, 13 participants (42%) said that they asked caregivers to identify their most important needs at that time. Other terms that participants reported using included most distressing/hardest, causing most worry, most pressing challenges, what impacted their life most and what would be the most beneficial. Participant 31 described saying: Think about what has the biggest impact on you, or what you find the hardest or struggle with and what would be most beneficial for you (P31). Twenty-seven participants (87%) reported being very or somewhat comfortable using the CSNAT for assessments, one saying: I felt it assisted me in identifying caregivers’ needs and addressing them, also helped with one-on-one time with the caregiver (P12). However, one of these participants said that the workload was an issue, describing this as follows: I had no problem with using the CSNAT – WHEN my workload allowed enough time … (P23).
Four participants (13%) reported feeling somewhat uncomfortable or unsure using the CSNAT, one indicating that the process was too formal for most caregivers (P17) and others were concerned about workload for them or the caregiver, saying: I often felt stressed due to time taken (P04) or caregivers were too tired or overwhelmed (P07).
Perceived benefits to family caregivers compared to standard practice The early intervention aspect of providing support to family caregivers was emphasised by many participants, such as Early questioning possibly avoided stresses that would not have surfaced until further into the client deterioration (P07); Assist caregiver with any help before a situation could occur, when they are overloaded or too stressed (P21). Participant 5 noted the cathartic nature of the assessment: This tool opened the way for the caregiver to share stories, difficulties, grief etc …this was all helpful for the caregiver (P05). Caregivers were also reported to be surprised at how their priorities for support changed between visits: They were amazed, looking back at the original one [assessment], how their priorities had changed (P18), and to be taking on a new focus – looking for and prioritising solutions: They had to make choices and realise what assistance they would benefit most from … (P12). This new focus was also reported to reduce anxiety: When clients had a clearer idea of their priorities, their anxiety levels dropped. They were more able to look for solutions to identified issues (P07). Additionally, nurses reported that family caregivers found the process validating in that it legitimised the caregiver being able to allow the focus to be on them at that time (P05); also that it prompted reflection and gave the caregiver courage to ask for support (P08). Time spent with the caregiver was also legitimised. Participant 12 stated: It gave me a reason to spend one-on-one time with the caregiver to voice concerns they could not freely voice in front of the client. This time was seen to change caregiver information provision – More information given to caregivers (P21) – and the extent to which caregivers were involved in decision-making – More conscious of including caregiver in conversations, decision making (P22). It is worth noting that nurses reported that some caregivers did not need support: Most [caregivers] felt they were already well supported and no issues were raised (P23), nevertheless highlighting the importance of checking with the caregivers and opening up a dialogue.
Perceived benefits to nurses compared to standard practice Eighty-two percent of nurses agreed that the CSNAT was effective in eliciting concerns from the caregivers: I feel
Downloaded from pmj.sagepub.com by guest on November 18, 2015
6
Palliative Medicine
that we have been trained to assess caregiver’s needs, but it has made me more aware to do so (P25); I felt I was better able to support the caregiver (P05). Sixty-eight percent agreed that the CSNAT prompted them to review or assess the supports they put in place: Affected referrals to home help, counsellor and social worker earlier, otherwise concerns may be only picked up later on (P12). Sixty-five percent agreed that there were positives for them when using the CSNAT compared to standard practice such as the CSNAT provided guidance, focus and structure, in the context of a single (early) conversation that was documented consistently in service records. Participant 12 stated: We addressed all support in one conversation, gaining early understanding of caregiver needs. The prevailing view was that CSNAT assessment helped to ensure that what should be a normal part of practice was more reliably implemented, as outlined by Participant 3: As a tool I can see it would prompt us but it really should be part of practice as we review and assess clients, we would do caregivers but I realise this isn’t always the case (P03). Participants explained that use of the CSNAT: facilitated closer relationships with caregivers (P7), allowed [the] caregiver to think about their own needs (P8), prompted conversations we wouldn’t necessarily have had (P19) and identified needs and service responses that would not have otherwise been identified. Assessment results were said to challenge preconceptions in the staff as indicated by these two participants: those who you thought were strong – actually were not (P18), and the main difference noted was need for information about the disease/ diagnosis: We probably assume this is already known or covered adequately by doctors (P03). Participant 20 noted possible communication benefits within the team: may have instigated more communication between allied health team.
Assisting family caregivers to provide care for their relative compared to assisting them with direct support for themselves There was a general view that addressing support needs identified using the CSNAT was within the capacity of the organisation: Respite, counselling, chaplaincy, equipment, Social Worker; experienced nurses with time to listen and problem solve and validate caregivers’ concerns are all funded in the service (P07). However, more nurses agreed that the solutions or actions taken were within the service capacity if they related to assisting the caregivers provide care (77%) compared to providing direct personal support for the caregiver (56%). On assisting family caregivers to provide care, nurses felt confident and did not encounter challenges: I think I cover this area well during my visits so this didn’t really get prioritised often as a problem (P06); I felt comfortable
with these questions, I gave information as appropriate, above all I gave reassurance that whatever presented itself we were here to support and step through this with them (P05). On assisting family caregivers with direct or personal support, this participant stated that: Most problems we could find solutions for – just helped knowing that they were problems (P22). However, many participants reported that some caregivers refused to accept help during the shared action planning: Problems mostly related to caregiver reluctant to access help. The service has good resources available to ease the burden of caring (P07); Main barrier was the caregiver themselves … they need to trust the person we are hoping to put in for respite (P11); … they usually refuse to see the counsellor as well (P21); Reluctance to accept help for themselves instead of client (P17). Participant 31 recognised the impossibility of having set times for volunteers to provide respite as a concern for caregivers, and that care recipients’ attitudes could also be a barrier: Often client not wanting to have anybody else present except caregiver – ‘no strangers’ in the home (P31). A sense of pressure was reported when acuity was high if needs could not be met and resources were described as varying between settings. For example, to assist caregivers with direct support, sometimes there was no overnight respite or inadequate respite, or an inability to access home or gardening help or an evening care aide. In particular, counselling may not be available in the period of time before the care recipient died: Sometimes counselling not available in appropriate length of time e.g. person died and counselling appt in 2 weeks-time (P20).
Other encountered issues About a third of nurses felt they encountered some challenges when using the CSNAT compared to standard practice. The nature of these challenges is described as follows: some said that it was burdensome for caregivers: Those that said ‘no’ felt they had enough on their plates (P28) or the staff – It was yet another form to be filled in – documentation is a huge problem (P06). Participant 17 found that the formal approach could have a ‘downside’: Some found it harder to formalise their concerns. I had clients who avoided filling in forms. One participant recognised some caregivers’ reluctance with regard to initial assessments: Hesitant in identifying concerns as wanted to be seen as managing (P22). Another concern was that assessments could exacerbate anxiety in some caregivers: Sometimes it could be worrying for caregivers – making them think about future problems they may not have anticipated (P25). The need for more information provision about the prognosis for caregivers (being one of the CSNAT items) elicited further concerns: Caregivers sometimes felt doctors
Downloaded from pmj.sagepub.com by guest on November 18, 2015
7
Aoun et al. in hospitals did not explain all the options to them and did not communicate well (P20). Nurses also reported difficulties explaining these options and noted a need to refer back to the hospital team with queries: Some I felt needed caregivers to talk with specialists (P22). Furthermore, it was perceived as problematic when caregivers or patients did not want to talk about illness or death or listen to what the nurse had to say: People may not listen or want to hear what you have to say (P29). It seems that simply having a conversation with a caregiver has brought up certain issues that caregivers might not yet be ready to attend to.
Potential integration in standard practice Two-thirds of participants agreed or strongly agreed that the CSNAT should be integrated in standard practice and the general opinion of many participants is depicted by this quote: Very valuable tool which empowers caregivers to be honest about their concerns and in response we set up interventions (P05). It is worth noting that those who had completed a greater number of CSNATs than the median have possibly tended to be more supportive for CSNAT introduction in standard practice compared to those who had completed fewer CSNATs than the median (82% vs 53%, respectively, p = 0.09). In addition, participants who were older than the median age were significantly more supportive than those who were younger (87% vs 42%, respectively, p = 0.01). To address concerns about workload and the potential for nurses to be overwhelmed by a need to do caregiver assessments in addition to those for the patient, it was recommended that there should be a formal recognition of the caregiver as a client of the service, with a corresponding time allocation to address caregivers’ needs: CSNAT formalised what I felt the majority of hospice nurses already do. Just need to allocate more time to visit. (P22) By doing CSNAT, feel we need to identify caregiver as a client too, to allocate time and give an accurate picture of how we work. In fact, often as a client reaches terminal phase, we can have the client at quite a peaceful place, often sedated and we actually end up supporting the caregiver more than the client, as we ready the caregiver for the client’s death. (P22)
The following suggestion recognised that some nurses tended to try to deal with needs themselves rather than referring to others. Instead, it was believed necessary to work more as a team to ensure meeting these needs: We need to be able to clearly identify caregiver’s needs and that we routinely evaluate support put in place and we reassess needs. Currently we don’t/can’t adequately [provide] this. But we also need to identify how as a team we will meet identified needs. Some RNs feel they need to address all needs themselves, not utilise the skills of others in the team. (P03)
Participants also expressed that the provision of resources should be streamlined and augmented and it was recommended that CSNAT assessments should be discussed at clinical meetings. It was indicated that ongoing training was needed for the staff as suggested by these participants: Training to use CSNAT was very helpful (P11); Nurses who had the opportunity of more training in use of CSNAT were more enthusiastic and more skilled (P07). Also, the streamlining of the process to fit with the current practice was recommended: integration into existing documents, using a single-page CSNAT document with reviews of support documented in existing notes and electronic recording of the results. A suggestion was made that repeat assessments should not be implemented when no issues were identified initially and optional assessments were also proposed: In theory it’s a great idea, but having the CSNAT as a ‘formal’ form we tick may be too much, having a form they can feel free to fill out and bring up for discussion would be beneficial (P19). This statement further highlights the necessity to keep the CSNAT as a caregiver-led intervention.
Discussion This article describes the experience of 31 nurses (70.5% response rate) who participated in the stepped wedge cluster trial of the CSNAT in a community-based palliative care setting in Western Australia. The feedback of the nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice from both the family caregiver and service provider perspectives. Using the CSNAT was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and allowed the assessment process to develop. Furthermore, a closer relationship with the caregiver was reported, thus supporting the recommendation for health professionals to work in partnership with family caregivers.14,24 Using the CSNAT process in this study required nurses to change from the professional-led approach to ‘facilitating’ a caregiver-led intervention, where 87% of nurses were comfortable using it in everyday practice and 81% of nurses felt it effectively elicited caregiver concerns. Furthermore, the CSNAT process legitimised the nurses’ role to focus specifically on the caregiver, spending more time to gain insights into caregivers’ needs. Our study seems to have successfully addressed the call for alternatives to the professional assessment paradigm11,16 using the CSNAT approach as a caregiver-led intervention facilitated by health professionals. As recommended in the literature, the research team worked in close partnership with the service to implement the intervention, identifying the suitability of the organisation and its stability, the clinical setting, staffing and resources in advance.25–28 A collaborative approach with
Downloaded from pmj.sagepub.com by guest on November 18, 2015
8
Palliative Medicine
the organisation involved a ‘champion’ for the project from within the organisation acting as a conduit between the research team and the nurses participating in the study and as an agent of change continuously highlighting to the nurses the importance of research into practice.25–31 Interactive educational and training sessions were held prior to commencing the study and continuing refresher sessions to sustain the project and report progress maintained the collaboration between researchers and nurses. This allowed opportunities for confirming the relevance of this research to the nurses’ practice as emphasised in the literature.27,29–32 Bridging the gap between knowledge and action can present considerable challenges as research evidence contends with long-held opinions, customs and traditions, thus restricting the behaviour change of health professionals.25–28,31 This was evident when a few nurses (n = 4) held a more negative perspective that the CSNAT intervention was not necessary as family caregivers were already well supported by their standard practice, maintaining time constraints hindered implementation. It is worth noting that this view was held by participants who had little experience in implementing the CSNAT. As findings indicated the more CSNATs were implemented by a nurse, the more insight was gained and the more supportive the nurse became of this intervention. Also, the older the nurse, the more supportive he or she was, reflected by more experience in the field. In addition, some nurses were overwhelmed by the research process and the necessity to include two CSNAT visits within a short time period as per intervention definition, which would not be the situation in practice, when they can make such decisions as per client need. However, it was interesting to distinguish further whether the reported support was within the standard practice of enabling family caregivers to provide care for their relative rather than the more direct support for themselves, this latter comprising the domains covered by the CSNAT which were over and above those covered in routine practice: while the majority of actions and solutions to family caregiver needs identified by the nurses using the CSNAT were able to be provided within the service capacity, a difference emerged. A higher percentage (77%) of nurses indicated ‘enabling’ support, relating to assisting caregivers to provide care to support the patient was within the service capacity, whereas 56% of nurses felt they could action ‘direct’ personal support for the caregiver themselves. This difference may be explained by the existing and necessary focus of service providers’ resources on the patient-centred approach to care delivery and support that the service routinely provides.
Strengths and limitations To our knowledge, this is the first study nationally and internationally to describe the service provider experience
in implementing the CSNAT intervention. There was a high response rate from nurses who had variability in their profile characteristics. This study has been conducted in one geographical area of Australia, although the three recruitment sites are located in the northern, southern and eastern suburbs of the metropolitan Perth, thus allowing a varied demographic mix of the population. Nevertheless, it may be that the experiences of service providers elsewhere in Australia and in other countries could be different depending on the structure of the organisation the healthcare system in the country, the availability of support, the type of terminal illness and profile of family caregivers and their care recipients. Although nurses were encouraged to participate, nevertheless their participation was voluntary. It may well be that the nurses who chose to participate had a more positive attitude compared to those who did not participate. Not all family caregivers would have been approached to participate. As mentioned in the article on description of the trial,20 while gatekeeping cannot be ruled out, we believe that in many cases the decision to include a caregiver in the study would have been most likely influenced by the workload of the nurse on the day and how timepressured she or he felt fitting in a number of clients that need to be visited. While it may be considered a limitation in other contexts, eliciting written responses via a questionnaire has worked well for this service and has captured a breadth of opinion and an opportunity for every nurse to have a voice, in addition to being the nurses’ choice of giving feedback. Furthermore, the quantitative feedback provided a robust indication to the service about the extent to which nurses supported or otherwise the different aspects of CSNAT implementation.
Conclusion Adopting and sustaining an intervention within an organisation depend on the relevance to identified goals and priorities, available resources and existing strategies.29,32 Certainly, this CSNAT intervention seems to be aligned to all these factors for Silver Chain Hospice Care service who is exploring ways for integrating it in standard practice. In summary, this intervention proved successful as several essential criteria were met: this research was able to demonstrate the relevance of the intervention to family caregivers as reported in Aoun et al.21 and to determine that the intervention is effective in significantly reducing caregiver strain in the intervention group compared to the control group.20 Furthermore, within this research setting, our findings indicate that this intervention would be relevant to service providers and has sufficiently impacted on the nurses’ experience to facilitate translation into practice. However, within a practice setting, services need to be mindful of the considerable complex challenges
Downloaded from pmj.sagepub.com by guest on November 18, 2015
9
Aoun et al. involved in implementing evidence-based practice as captured in the multi-dimensional framework ‘Promoting Action on Research Implementation in Health Services’ (PARiHS).29,33 Acknowledgements The authors gratefully acknowledge the contribution of the Silver Chain clinical nurse consultants who facilitated the project in the service sites, the nurses in recruitment and data collection and their contribution to this survey. The contribution of family caregivers is also greatly acknowledged. This study has been undertaken by the International Collaborative on Family Caregiving Research in Palliative and End of Life Care between Curtin University in Australia, Manchester University in the United Kingdom and University of Victoria in Canada.
Declaration of conflicting interests The authors declare that there is no conflict of interest.
Funding This research was supported by an Australian Research Council linkage grant and Silver Chain (LP110100622).
References 1. Lane P, McKenna H, Ryan A, et al. The experience of the family caregivers’ role: a qualitative study. Res Theory Nurs Pract 2003; 17(2): 137–151. 2. Payne S and Morbey H. Supporting family carers: report on the evidence of how to work with and support family carers to inform the work of the Commission into the future of hospice care. Report, Help the Hospices, UK, October 2013, p. 36. 3. Aoun SM, Kristjanson LJ, Currow DC, et al. Caregiving for the terminally ill: at what cost? Palliat Med 2005; 19(7): 551–555. DOI: 10.1191/0269216305pm1053oa. 4. National Institute of Clinical Excellence (NICE). Guidance on cancer services improving supportive and palliative care for adults with cancer. Oxford: NICE, 2004, http://www. nice.org.uk 5. Commonwealth of Australia. National palliative care strategy. Barton, ACT, Australia: Commonwealth of Australia, 2010, http://www.health.gov.au/internet/main/publishing. nsf/Content/A87BC5583161BEBFCA257BF0001D3AF6/ $File/NationalPalliativeCareStrategy.pdf 6. Carstairs S and Keon WJ. Canada’s aging population: seizing the opportunity (Special Senate Committee on Aging – final report). Ottawa, ON, Canada, 2009, http://www. senate-senat.ca/age.asp 7. Ferrario SR, Cardillo V, Vicario F, et al. Advanced cancer at home: caregiving and bereavement. Palliat Med 2004; 18(2): 129–136. DOI: 10.1191/0269216304pm870oa. 8. Grande GE, Farquhar MC, Barclay SIG, et al. Caregiver bereavement outcome: relationship with hospice at home, satisfaction with care, and home death. J Palliat Care 2004; 20(2): 69–77. 9. Ewing G, Brundle C, Payne S, et al. The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study. J Pain Symptom
Manage 2013; 46(3): 395–405. DOI: 10.1016/j.jpainsymman.2012.09.008. 10. Ewing G and Grande G. Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: a qualitative study. Palliat Med 2013; 27(3): 244–256. DOI: 10.1177/0269216312440607. 11. Stirling C, Andrews S, Croft T, et al. Measuring dementia carers’ unmet need for services – an exploratory mixed method study. BMC Health Serv Res 2010; 10: 122. DOI: 10.1186/1472-6963-10-122. 12. Robinson A, Emden C, Lea E, et al. Information issues for providers of services to people with dementia living in the community in Australia: breaking the cycle of frustration. Health Soc Care Community 2009; 17(2): 141–150. DOI: 10.1111/j.1365-2524.2008.00808.x. 13. Spijker A, Vernooij-Dassen M, Vasse E, et al. Effectiveness of nonpharmacological interventions in delaying the institutionalization of patients with dementia: a meta-analysis. J Am Geriatr Soc 2008; 56(6): 1116–1128. DOI: 10.1111/j.1532-5415.2008.01705.x. 14. Keady J and Nolan M. The carer-led assessment process (CLASP): a framework for the assessment of need in dementia caregivers. J Clin Nurs 1994; 3(2): 103–108. DOI: 10.1111/j.1365-2702.1994.tb00369.x. 15. Meaney AM, Croke M and Kirby M. Needs assessment in dementia. Int J Geriatr Psychiatry 2005; 20(4): 322–329. DOI: 10.1002/gps.1284. 16. Asadi-Lari M, Packham C and Gray D. Unmet health needs in patients with coronary heart disease: implications and potential for improvement in caring services. Health Qual Life Outcomes 2003; 1(1): 26, http://www.hqlo.com/content/1/1/26 17. Hudson PL, Trauer T, Graham S, et al. A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med 2010; 24(7): 656–668. 18. Help the Hospices. Identifying the carers’ needs in the palliative setting: guide for professionals. Help the Hospices, 2009, http://www.hospiceuk.org/what-we-offer/ publications?cat=842a4112-4ccd-608d-ad24-ff0000fd3330 19. Austin L, Ewing G and Grande G. Facilitating a shift to comprehensive care-led assessment in palliative home care: the CSNAT approach (abstract presented at: 8th world research congress of the European Association for Palliative Care (EAPC): Lleida, Spain 5–7 June 2014). Palliat Med 2014; 28(6): 538–913. DOI: 10.1177/ 0269216314532748. 20. Aoun SM, Grande G, Howting D, et al. The impact of the Carer Support Needs Assessment Tool (CSNAT) in community palliative care using a Stepped Wedge Cluster Trial. PLos One. 2015 Apr 7; 10(4):e0123012. DOI: 10.1371/ journal.pone.0123012 21. Aoun S, Deas K, Toye C, et al. Supporting family caregivers to identify their own needs in end of life care: qualitative findings from a Stepped Wedge Cluster Trial. Palliat Med. Epub ahead of print 2 February 2015. DOI: 10.1177/0269216314566061. 22. Hsieh HF and Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15(9): 1277–1288. DOI: 10.1177/1049732305276687.
Downloaded from pmj.sagepub.com by guest on November 18, 2015
10
Palliative Medicine
23. Guest G, MacQueen KM and Namey EE. Applied thematic analysis. London: SAGE, 2012. 24. Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. Crown Copyright, 2008, https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-qualitycare-for-adults-at-the-end-of-their-life 25. Fineout-Overholt E, Melnyk BM and Schultz A. Transforming health care from the inside out: advancing evidence-based practice in the 21st century. J Prof Nurs 2005; 21(6): 335–344. 26. World Health Organization. World report on knowledge for better health: strengthening health systems. Geneva: World Health Organization, 2004. 27. Gagnon ML. Moving knowledge to action through dissemination and exchange. J Clin Epidemiol 2011; 64(1): 25–31. DOI: 10.1016/j.jclinepi.2009.08.013. 28. Glasgow RE and Emmons KM. How can we increase translation of research into practice? Types of evidence needed. Annu Rev Public Health 2007; 28: 413–433.
29. Rycroft-Malone J, Harvey G, Seers K, et al. An exploration of the factors that influence the implementation of evidence into practice. J Clin Nurs 2004; 13(8): 913–924. DOI: 10.1111/j.1365-2702.2004.01007.x. 30. Thompson DS, Estabrooks CA, Scott-Findlay S, et al. Interventions aimed at increasing research use in nursing: a systematic review. Implement Sci 2007; 2(1): 15. 31. Brown CE, Wickline MA, Ecoff L, et al. Nursing practice, knowledge, attitudes and perceived barriers to evidence-based practice at an academic medical center. J Adv Nurs 2009; 65(2): 371–381. DOI: 10.1111/j.1365-2648.2008.04878.x. 32. Institute of Medicine. Integrating research and practice: health system leaders working together toward high-value care (workshop summary). Institute of Medicine, 2014, http://www.iom.edu/IntegratingResearchPractice 33. Kitson AL, Rycroft-Malone J, Harvey G, et al. Evaluating the successful implementation of evidence into practice using the PARiHS framework: theoretical and practical challenges. Implement Sci 2008; 3(1): 1.
Downloaded from pmj.sagepub.com by guest on November 18, 2015
PMJ0010.1177/0269216315583436Palliative MedicineAoun et al.
Original Article
Enabling a family caregiver-led assessment of support needs in home-based palliative care: Potential translation into practice
Palliative Medicine 1–10 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315583436 pmj.sagepub.com
Samar Aoun1, Chris Toye1, Kathleen Deas1, Denise Howting1, Gail Ewing2, Gunn Grande3 and Kelli Stajduhar4
Abstract Background: Systematic assessment of family caregivers’ support needs and integrating these into service planning according to evidence-based research are vital to improving caregivers’ outcomes and their capacity to provide care at end of life. Aim: To describe the experience with and feedback of nurses on implementing a systematic assessment of support needs with family caregivers in home-based palliative care, using the Carer Support Needs Assessment Tool. Methods: This study was conducted during 2012–2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. Forty-four nurses who trialled the intervention with 233 family caregivers gave their feedback via surveys with closed- and open-ended questions (70.5% response rate). Analyses of quantitative and qualitative data were undertaken. Results: The feedback of nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice both from the family caregiver and service provider perspectives. Using the Carer Support Needs Assessment Tool was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and as identifying needs and service responses that would not otherwise have been undertaken in a timely manner. Conclusion: Our study has successfully addressed the call for alternatives to the professional assessment paradigm using the Carer Support Needs Assessment Tool approach as a caregiver-led intervention facilitated by health professionals. Integrating the Carer Support Needs Assessment Tool in existing practice is fundamental to achieving better caregiver outcomes.
Keywords Carer Support Needs Assessment Tool, palliative care, family caregivers, service provision
What is already known about the topic? •• Community practitioners should work in partnership with family caregivers •• Support based on caregivers’ ‘felt needs’ is essential to address unmet needs •• The Carer Support Needs Assessment Tool (CSNAT) was developed to systematically evaluate caregivers’ needs from their perspective What this paper adds? •• When using the CSNAT, nurses were generally comfortable with the process and perceived benefits for caregivers and for their practice.
1School
of Nursing and Midwifery, Curtin University, Perth, WA, Australia 2Centre for Family Research, University of Cambridge, Cambridge, UK 3School of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, UK 4School of Nursing and Centre on Aging, University of Victoria, Victoria, BC, Canada
Corresponding author: Samar Aoun, School of Nursing and Midwifery, Curtin University, GPO Box U1987, Perth, WA 6845, Australia. Email: [email protected]
Downloaded from pmj.sagepub.com by guest on November 18, 2015
2
Palliative Medicine •• This study required nurses to change from the professional-led approach to facilitating a caregiver-led approach •• The majority of nurses recommended embedding the CSNAT in routine practice
Implications for practice, theory or policy •• Using the CSNAT is one way to systematically evaluate caregivers’ needs from their perspective that is viewed as beneficial and achievable by nursing staff •• Such a systematic assessment can then underpin an equally systematic approach enabling more direct support to caregivers rather than just enabling the caregiver to provide care
Background To inform future planning and policies for solutions to the growing demand for family care and the associated challenges encountered by family caregivers, it is essential to integrate family caregivers’ needs into service planning.1,2 Policy makers and government and caregiving organisations in the United Kingdom, Australia and Canada stress that family caregivers’ needs should be assessed and addressed and are urgently seeking ways to ensure the ongoing capacity of family caregivers to provide care.3–6 Identifying any gaps in service provision for caregivers and sharing evidence-based research about the most effective, supportive interventions that service providers can deliver are vital to disseminating knowledge to improve outcomes for caregivers.2 Evidence suggests that good support can improve family caregivers’ psychological outcomes in the longer term.7,8 It is recommended that ongoing assessment to anticipate caregiver needs be integrated into routine palliative care rather than ‘crisis’ driven.2 However, numerous factors impede adequate assessment of family caregivers’ support needs. Service providers focus on the patient, often have limited time to undertake comprehensive assessment of family caregivers’ problems and may be reluctant to openly do so in the patient’s presence. A family caregiver’s assessment is often informal and undocumented, making family caregivers’ support needs less ‘visible’.9,10 In a recent Australian study on caregivers’ unmet needs,11 different domains of caregivers’ needs showed support based on caregivers’ ‘felt needs’ was essential to address unmet needs, rather than service providers basing caregiver support on a ‘normative needs’ assessment approach using objective measures of caregiver burden or patient health status.11 Recent research in several disease groups has also shown the importance for family caregivers to play a more pivotal role in need assessments and support programmes for the caregiver and patient,12,13 including a caregiver-led assessment process and recommending a change of attitude for service providers from ‘expert’ to an ‘enabler’, working in partnership with caregivers, acknowledging their expertise about the caring relationship.14 Increasingly, the usefulness of existing measures of caregiver burden is questioned15 and there is a call for alternatives to the professional assessment paradigm.11,16 Suitable
tools for assessment of family caregivers’ support needs in end-of-life home care are lacking,10,17 and furthermore, work from the United Kingdom18 demonstrated that family caregiver assessment undertaken by palliative home care services relies on ad hoc, non-validated tools that show little commonality in content or format. To address this gap, Ewing and Grande10 have developed and validated an evidence-based, comprehensive Carer Support Needs Assessment Tool (CSNAT) of caregivers’ support needs, as identified by the caregiver, designed in response to the need for a straightforward assessment tool for use as part of routine practice in palliative home care.9,10 Using the CSNAT requires a shift from the informal health professional-led methods of identifying caregivers’ support needs to a caregiver-led approach facilitated by the health professional,19 in other words facilitating the shift to person-centred care. This collaborative research study was initiated when the Silver Chain Hospice Care Service (SCHCS), a large organisation providing home-based specialist palliative care in Perth, Western Australia, identified a need to further address the following organisational standard: ‘The needs of the primary caregiver/s are assessed independently and are documented with supportive strategies in the plan of care’. An internal quality action plan has identified this gap against the Australian Palliative Care Standards. SCHCS identified the CSNAT as a potentially useful intervention and sought to work in partnership with the researchers in this study to test its impact and determine how its use was experienced by family caregivers and the staff. SCHCS was involved in guiding and monitoring the research procedures in their service, recruiting for the study from within their client pool and liaising with their staff regarding data collection. The overall purpose of the study was to evaluate the implementation of CSNAT in this service context through three phases: Phase 1: a stepped wedge cluster trial was used to implement the CSNAT with an intervention group using the CSNAT for identification of support needs and a control group using the service standard identification of support needs. Pre- and post-outcome measures were
Downloaded from pmj.sagepub.com by guest on November 18, 2015
3
Aoun et al. collected for the two groups. Total recruitment was 620. There was 45% attrition for both groups between baseline and follow-up mainly due to patient deaths, resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). The intervention group showed significant reduction in caregiver strain relative to controls, p = 0.018, d = 0.348.20 Phase 2: feedback on using the CSNAT was sought from 233 family caregivers in the intervention group through telephone interviews, as each completed the study.21 Phase 3: feedback on using the CSNAT was sought from 44 nurses who participated in the trial. This article reports findings from the 44 nurses in Phase 3.
Aim The aim of this article was to describe the experience with and feedback of nurses on implementing the CSNAT intervention with family caregivers in home-based palliative care.
Methodology The study was approved by the Curtin University Human Research Ethics Committee (HR 24/2011) and the Silver Chain Human Research Ethics Committee (EC App 068). At the start of the trial, nurses signed a consent form to provide their feedback at the end of the trial. All aspects of this study conformed to consolidated criteria for reporting qualitative research (COREQ) requirements.
Service context This study was conducted during 2012–2014 in three sites of the SCHCS, Australia’s largest provider of home-based palliative care. As described in Aoun et al21, the service is provided is provided by an interdisciplinary team comprising general practitioners with a special interest in palliative care, medical consultants, registrars, resident medical officers, palliative care specialist nurses, counsellors, chaplains, care assistants, social workers and volunteers, who work with the patient to control symptoms and address psychosocial needs. Typically, nurses visit patients weekly and increase visits according to client needs for care and symptom management and care assistants provide personal care visits three times per week to daily depending on patient needs. The average length of stay with the service is approximately 90 days. In relation to caregiver support prior to the study, standard practice included staff meeting with the caregiver during the client visit and discussing the caregiver needs on an informal basis. Following this discussion, the staff member would offer services and equipment that Silver Chain
is currently able to provide. These services include social work, counselling, spiritual care, personal care and inhome day respite. The service is able to access crisis respite from external organisations. The equipment that is provided free of charge includes hospital beds and pressure-relieving equipment. Some aspects of the discussion with caregivers would be documented; however, many conversations are ‘drive way’ conversations (outside of the home) and are therefore on an ad hoc basis and not documented as clients’ clinical records are currently paper based and stored in the home.
Description of intervention The CSNAT adopts a screening format, structured around 14 broad support domains. This format allows it to be brief and also comprehensive, enabling caregivers to identify the domains in which they require further support which can then be discussed with health professionals. Each item represents a core family caregiver support domain in endof-life home care, and these domains fall into two distinct groupings: those enabling the caregiver to care and those enabling more direct support for themselves.9,10 As described in Aoun et al21, the CSNAT intervention consisted of at least two visits from nurses (2–3 weeks apart) to identify and review family caregivers’ needs. The CSNAT was either self-completed by the family caregiver or completed jointly with the nurse. Family caregivers identified the domains where they needed support in general and indicated which domains were their main priorities. These priorities were then discussed with the nurse who recorded the actions taken or proposed solutions for each priority need and discussed a shared action plan. At the start of the study, family caregivers of clients newly admitted or already receiving palliative care were invited by participating nurses to take part at the first feasible opportunity during a face-to-face visit. Nurses obtained written informed consent for the study.
Description of training The training was conducted by the research team. Nurses were trained in the use of the CSNAT as a caregiverled approach for identifying and addressing caregiver needs rather than the traditional way of professional-led approach. As described in Aoun et al21,one training session of 2–3 h long was provided (mostly in groups of six to eight) at the start of data collection for the intervention. Therefore, a total of six main training sessions (two sessions for each site) were undertaken to accommodate the availability of staff. Due to the additional time pressure, training sessions were perceived to add to the nurses’ busy schedules; we were asked to keep sessions short and not so frequent. These initial training sessions were followed towards the middle of the data collection period by three refresher sessions (one session for each site) lasting 1–2 h
Downloaded from pmj.sagepub.com by guest on November 18, 2015
4
Palliative Medicine
to discuss nurses’ experiences, issues with recruiting and completing the intervention. In addition, the research team had monthly meetings with the designated champion of the project in the service (a senior clinical nurse manager) to follow progress and discuss challenges in each site. Suggestions from the research team were relayed back by the champion to the recruiting nurses during their regular weekly clinical meetings. Furthermore, nurses had daily access by phone to the advice of the research nurse, and texting was the preferred way for individual nurses to liaise with the research nurse.
Study design Data were collected through a survey consisting mostly of qualitative open-ended questions. All responses were hand-written by the respondents. When the nurses were given the option between a focus group, face-to-face interview and completing a questionnaire, they chose the latter so that they could complete the task when they most had the time to think and reflect. Additional data were obtained using closed questions with response options such as ‘yes’ or ‘no’ or a 5-point Likert scale from ‘strongly agree’ to ‘strongly disagree’. The questionnaire had three sections: feedback on the practicalities of CSNAT implementation, feedback on the impact of the CSNAT on nurses and the family caregivers and feedback on CSNAT potential routine use in the service. Questions centred around the nurses’ experience participating in CSNAT implementation; their opinion whether this assessment process was effective in eliciting caregiver concerns; whether it had affected the support provided, the benefits of or challenges compared to standard practice; whether the solutions provided were within service capacity; their suggestions for improvement and whether they would recommend the CSNAT for use in routine practice. Forty-eight Silver Chain Hospice Care nurses participated in the trial. The nurses who had gone through the experience of completing at least three CSNATs with any family caregiver were invited to complete the anonymous questionnaire (n = 44). Four nurses were excluded because they joined the study towards the end and had completed only one CSNAT. The questionnaires were delivered to each service centre in individually sealed addressed envelopes. The completed surveys were returned either by posting to the researcher in a sealed, prepaid envelope or the sealed envelope was deposited in a secure designated box at each centre collected by the researcher.
Analysis Qualitative responses were initially grouped according to the response option selected for each survey item, ensuring that the context of the comment or explanation could be
considered. These qualitative responses were then subjected to a directed content analysis22,23 in order to identify nurses’ perspectives on implementing the intervention. The coding scheme was drawn from the focus of each section of the questionnaire: after reading and re-reading the responses, words and phrases were grouped into categories independently by three co-authors, one being the research nurse coordinator who frequently liaised with the service during the study, and so was familiar with service specific terminology. Differences of opinion were resolved by discussion and by returning to the data. Exemplars help demonstrate how interpretations have been reached. Descriptive statistics, using SPSS 22, were used for quantitative data.
Results Participants Thirty-one nurses out of the 44 who participated in the trial (and completed at least three CSNATs) responded to the survey (70.5% response rate). Some of the known reasons some nurses did not respond were due to leaving the service (n = 3), or being on annual leave or sick leave (n = 4). Table 1 summarises the profile of respondents to the survey (n = 31). The majority were female; the median age was 51 years, with a median of 10 years working in palliative care and 6.5 years with Silver Chain Service. Responses from participants were grouped under six main categories: (1) the practicalities of CSNAT implementation, (2) perceived benefits to family caregivers compared to standard practice, (3) perceived benefits to nurses compared to standard practice, (4) assisting caregivers to provide care for their relative compared to assisting caregivers with support for themselves, (5) other encountered issues and (6) integration into standard practice. Quantitative findings were included in relevant categories to support the qualitative findings.
Practicalities of CSNAT implementation Participants indicated that they introduced the tool by making the caregiver aware that it was to help focus on them and their needs: I told the caregiver that the CSNAT project was to give them a voice. Also, hopefully to get more support for caregivers (P06). Nurses varied in the way that they described carrying out the assessment process. About half of the participants (45%) described a flexible approach, indicating that some caregivers needed help to complete the CSNATs whereas others did not. Some caregivers were generally viewed as needing help, but there were also other considerations, as noted in this comment: Depending on age and understanding of caregiver and language ability (P12). Twelve participants (39%) said that they generally asked family caregivers to complete the tool themselves to
Downloaded from pmj.sagepub.com by guest on November 18, 2015
5
Aoun et al. Table 1. Profile of nurses who responded to the survey (n = 31). Gender Male Female Age (years) Median Range Length of time in palliative care (years) Median Range Length of time with Silver Chain (years) Median Range Number of completed CSNATs Median Range
3 28 51.00 29–65 10.00 1–26 6.50 0.7–25 7.0 3–19
CSNAT: Carer Support Needs Assessment Tool.
allow caregivers to have more time to consider each question (P09) or to allow the nurse more time with the client: Would get caregiver to complete assessment whilst I was talking with client (P22). Self-assessment was sometimes followed or accompanied by discussion to provide or seek clarification if needed, as indicated by Participant 5: I chose to let the participant go through the list at their own pace however I carefully explained the preface to each question with ‘Do you need more help with …’. I was with the participant but not reading out each line. (P05)
A minority (13%) reported consistently reading out all the CSNAT questions to the caregivers, providing the rationale that caregivers were overloaded and might find completing the CSNAT burdensome. Participant 4 stated: Very few people enjoy filling out forms so I decided to help with this process (P04). When establishing support priorities, 13 participants (42%) said that they asked caregivers to identify their most important needs at that time. Other terms that participants reported using included most distressing/hardest, causing most worry, most pressing challenges, what impacted their life most and what would be the most beneficial. Participant 31 described saying: Think about what has the biggest impact on you, or what you find the hardest or struggle with and what would be most beneficial for you (P31). Twenty-seven participants (87%) reported being very or somewhat comfortable using the CSNAT for assessments, one saying: I felt it assisted me in identifying caregivers’ needs and addressing them, also helped with one-on-one time with the caregiver (P12). However, one of these participants said that the workload was an issue, describing this as follows: I had no problem with using the CSNAT – WHEN my workload allowed enough time … (P23).
Four participants (13%) reported feeling somewhat uncomfortable or unsure using the CSNAT, one indicating that the process was too formal for most caregivers (P17) and others were concerned about workload for them or the caregiver, saying: I often felt stressed due to time taken (P04) or caregivers were too tired or overwhelmed (P07).
Perceived benefits to family caregivers compared to standard practice The early intervention aspect of providing support to family caregivers was emphasised by many participants, such as Early questioning possibly avoided stresses that would not have surfaced until further into the client deterioration (P07); Assist caregiver with any help before a situation could occur, when they are overloaded or too stressed (P21). Participant 5 noted the cathartic nature of the assessment: This tool opened the way for the caregiver to share stories, difficulties, grief etc …this was all helpful for the caregiver (P05). Caregivers were also reported to be surprised at how their priorities for support changed between visits: They were amazed, looking back at the original one [assessment], how their priorities had changed (P18), and to be taking on a new focus – looking for and prioritising solutions: They had to make choices and realise what assistance they would benefit most from … (P12). This new focus was also reported to reduce anxiety: When clients had a clearer idea of their priorities, their anxiety levels dropped. They were more able to look for solutions to identified issues (P07). Additionally, nurses reported that family caregivers found the process validating in that it legitimised the caregiver being able to allow the focus to be on them at that time (P05); also that it prompted reflection and gave the caregiver courage to ask for support (P08). Time spent with the caregiver was also legitimised. Participant 12 stated: It gave me a reason to spend one-on-one time with the caregiver to voice concerns they could not freely voice in front of the client. This time was seen to change caregiver information provision – More information given to caregivers (P21) – and the extent to which caregivers were involved in decision-making – More conscious of including caregiver in conversations, decision making (P22). It is worth noting that nurses reported that some caregivers did not need support: Most [caregivers] felt they were already well supported and no issues were raised (P23), nevertheless highlighting the importance of checking with the caregivers and opening up a dialogue.
Perceived benefits to nurses compared to standard practice Eighty-two percent of nurses agreed that the CSNAT was effective in eliciting concerns from the caregivers: I feel
Downloaded from pmj.sagepub.com by guest on November 18, 2015
6
Palliative Medicine
that we have been trained to assess caregiver’s needs, but it has made me more aware to do so (P25); I felt I was better able to support the caregiver (P05). Sixty-eight percent agreed that the CSNAT prompted them to review or assess the supports they put in place: Affected referrals to home help, counsellor and social worker earlier, otherwise concerns may be only picked up later on (P12). Sixty-five percent agreed that there were positives for them when using the CSNAT compared to standard practice such as the CSNAT provided guidance, focus and structure, in the context of a single (early) conversation that was documented consistently in service records. Participant 12 stated: We addressed all support in one conversation, gaining early understanding of caregiver needs. The prevailing view was that CSNAT assessment helped to ensure that what should be a normal part of practice was more reliably implemented, as outlined by Participant 3: As a tool I can see it would prompt us but it really should be part of practice as we review and assess clients, we would do caregivers but I realise this isn’t always the case (P03). Participants explained that use of the CSNAT: facilitated closer relationships with caregivers (P7), allowed [the] caregiver to think about their own needs (P8), prompted conversations we wouldn’t necessarily have had (P19) and identified needs and service responses that would not have otherwise been identified. Assessment results were said to challenge preconceptions in the staff as indicated by these two participants: those who you thought were strong – actually were not (P18), and the main difference noted was need for information about the disease/ diagnosis: We probably assume this is already known or covered adequately by doctors (P03). Participant 20 noted possible communication benefits within the team: may have instigated more communication between allied health team.
Assisting family caregivers to provide care for their relative compared to assisting them with direct support for themselves There was a general view that addressing support needs identified using the CSNAT was within the capacity of the organisation: Respite, counselling, chaplaincy, equipment, Social Worker; experienced nurses with time to listen and problem solve and validate caregivers’ concerns are all funded in the service (P07). However, more nurses agreed that the solutions or actions taken were within the service capacity if they related to assisting the caregivers provide care (77%) compared to providing direct personal support for the caregiver (56%). On assisting family caregivers to provide care, nurses felt confident and did not encounter challenges: I think I cover this area well during my visits so this didn’t really get prioritised often as a problem (P06); I felt comfortable
with these questions, I gave information as appropriate, above all I gave reassurance that whatever presented itself we were here to support and step through this with them (P05). On assisting family caregivers with direct or personal support, this participant stated that: Most problems we could find solutions for – just helped knowing that they were problems (P22). However, many participants reported that some caregivers refused to accept help during the shared action planning: Problems mostly related to caregiver reluctant to access help. The service has good resources available to ease the burden of caring (P07); Main barrier was the caregiver themselves … they need to trust the person we are hoping to put in for respite (P11); … they usually refuse to see the counsellor as well (P21); Reluctance to accept help for themselves instead of client (P17). Participant 31 recognised the impossibility of having set times for volunteers to provide respite as a concern for caregivers, and that care recipients’ attitudes could also be a barrier: Often client not wanting to have anybody else present except caregiver – ‘no strangers’ in the home (P31). A sense of pressure was reported when acuity was high if needs could not be met and resources were described as varying between settings. For example, to assist caregivers with direct support, sometimes there was no overnight respite or inadequate respite, or an inability to access home or gardening help or an evening care aide. In particular, counselling may not be available in the period of time before the care recipient died: Sometimes counselling not available in appropriate length of time e.g. person died and counselling appt in 2 weeks-time (P20).
Other encountered issues About a third of nurses felt they encountered some challenges when using the CSNAT compared to standard practice. The nature of these challenges is described as follows: some said that it was burdensome for caregivers: Those that said ‘no’ felt they had enough on their plates (P28) or the staff – It was yet another form to be filled in – documentation is a huge problem (P06). Participant 17 found that the formal approach could have a ‘downside’: Some found it harder to formalise their concerns. I had clients who avoided filling in forms. One participant recognised some caregivers’ reluctance with regard to initial assessments: Hesitant in identifying concerns as wanted to be seen as managing (P22). Another concern was that assessments could exacerbate anxiety in some caregivers: Sometimes it could be worrying for caregivers – making them think about future problems they may not have anticipated (P25). The need for more information provision about the prognosis for caregivers (being one of the CSNAT items) elicited further concerns: Caregivers sometimes felt doctors
Downloaded from pmj.sagepub.com by guest on November 18, 2015
7
Aoun et al. in hospitals did not explain all the options to them and did not communicate well (P20). Nurses also reported difficulties explaining these options and noted a need to refer back to the hospital team with queries: Some I felt needed caregivers to talk with specialists (P22). Furthermore, it was perceived as problematic when caregivers or patients did not want to talk about illness or death or listen to what the nurse had to say: People may not listen or want to hear what you have to say (P29). It seems that simply having a conversation with a caregiver has brought up certain issues that caregivers might not yet be ready to attend to.
Potential integration in standard practice Two-thirds of participants agreed or strongly agreed that the CSNAT should be integrated in standard practice and the general opinion of many participants is depicted by this quote: Very valuable tool which empowers caregivers to be honest about their concerns and in response we set up interventions (P05). It is worth noting that those who had completed a greater number of CSNATs than the median have possibly tended to be more supportive for CSNAT introduction in standard practice compared to those who had completed fewer CSNATs than the median (82% vs 53%, respectively, p = 0.09). In addition, participants who were older than the median age were significantly more supportive than those who were younger (87% vs 42%, respectively, p = 0.01). To address concerns about workload and the potential for nurses to be overwhelmed by a need to do caregiver assessments in addition to those for the patient, it was recommended that there should be a formal recognition of the caregiver as a client of the service, with a corresponding time allocation to address caregivers’ needs: CSNAT formalised what I felt the majority of hospice nurses already do. Just need to allocate more time to visit. (P22) By doing CSNAT, feel we need to identify caregiver as a client too, to allocate time and give an accurate picture of how we work. In fact, often as a client reaches terminal phase, we can have the client at quite a peaceful place, often sedated and we actually end up supporting the caregiver more than the client, as we ready the caregiver for the client’s death. (P22)
The following suggestion recognised that some nurses tended to try to deal with needs themselves rather than referring to others. Instead, it was believed necessary to work more as a team to ensure meeting these needs: We need to be able to clearly identify caregiver’s needs and that we routinely evaluate support put in place and we reassess needs. Currently we don’t/can’t adequately [provide] this. But we also need to identify how as a team we will meet identified needs. Some RNs feel they need to address all needs themselves, not utilise the skills of others in the team. (P03)
Participants also expressed that the provision of resources should be streamlined and augmented and it was recommended that CSNAT assessments should be discussed at clinical meetings. It was indicated that ongoing training was needed for the staff as suggested by these participants: Training to use CSNAT was very helpful (P11); Nurses who had the opportunity of more training in use of CSNAT were more enthusiastic and more skilled (P07). Also, the streamlining of the process to fit with the current practice was recommended: integration into existing documents, using a single-page CSNAT document with reviews of support documented in existing notes and electronic recording of the results. A suggestion was made that repeat assessments should not be implemented when no issues were identified initially and optional assessments were also proposed: In theory it’s a great idea, but having the CSNAT as a ‘formal’ form we tick may be too much, having a form they can feel free to fill out and bring up for discussion would be beneficial (P19). This statement further highlights the necessity to keep the CSNAT as a caregiver-led intervention.
Discussion This article describes the experience of 31 nurses (70.5% response rate) who participated in the stepped wedge cluster trial of the CSNAT in a community-based palliative care setting in Western Australia. The feedback of the nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice from both the family caregiver and service provider perspectives. Using the CSNAT was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and allowed the assessment process to develop. Furthermore, a closer relationship with the caregiver was reported, thus supporting the recommendation for health professionals to work in partnership with family caregivers.14,24 Using the CSNAT process in this study required nurses to change from the professional-led approach to ‘facilitating’ a caregiver-led intervention, where 87% of nurses were comfortable using it in everyday practice and 81% of nurses felt it effectively elicited caregiver concerns. Furthermore, the CSNAT process legitimised the nurses’ role to focus specifically on the caregiver, spending more time to gain insights into caregivers’ needs. Our study seems to have successfully addressed the call for alternatives to the professional assessment paradigm11,16 using the CSNAT approach as a caregiver-led intervention facilitated by health professionals. As recommended in the literature, the research team worked in close partnership with the service to implement the intervention, identifying the suitability of the organisation and its stability, the clinical setting, staffing and resources in advance.25–28 A collaborative approach with
Downloaded from pmj.sagepub.com by guest on November 18, 2015
8
Palliative Medicine
the organisation involved a ‘champion’ for the project from within the organisation acting as a conduit between the research team and the nurses participating in the study and as an agent of change continuously highlighting to the nurses the importance of research into practice.25–31 Interactive educational and training sessions were held prior to commencing the study and continuing refresher sessions to sustain the project and report progress maintained the collaboration between researchers and nurses. This allowed opportunities for confirming the relevance of this research to the nurses’ practice as emphasised in the literature.27,29–32 Bridging the gap between knowledge and action can present considerable challenges as research evidence contends with long-held opinions, customs and traditions, thus restricting the behaviour change of health professionals.25–28,31 This was evident when a few nurses (n = 4) held a more negative perspective that the CSNAT intervention was not necessary as family caregivers were already well supported by their standard practice, maintaining time constraints hindered implementation. It is worth noting that this view was held by participants who had little experience in implementing the CSNAT. As findings indicated the more CSNATs were implemented by a nurse, the more insight was gained and the more supportive the nurse became of this intervention. Also, the older the nurse, the more supportive he or she was, reflected by more experience in the field. In addition, some nurses were overwhelmed by the research process and the necessity to include two CSNAT visits within a short time period as per intervention definition, which would not be the situation in practice, when they can make such decisions as per client need. However, it was interesting to distinguish further whether the reported support was within the standard practice of enabling family caregivers to provide care for their relative rather than the more direct support for themselves, this latter comprising the domains covered by the CSNAT which were over and above those covered in routine practice: while the majority of actions and solutions to family caregiver needs identified by the nurses using the CSNAT were able to be provided within the service capacity, a difference emerged. A higher percentage (77%) of nurses indicated ‘enabling’ support, relating to assisting caregivers to provide care to support the patient was within the service capacity, whereas 56% of nurses felt they could action ‘direct’ personal support for the caregiver themselves. This difference may be explained by the existing and necessary focus of service providers’ resources on the patient-centred approach to care delivery and support that the service routinely provides.
Strengths and limitations To our knowledge, this is the first study nationally and internationally to describe the service provider experience
in implementing the CSNAT intervention. There was a high response rate from nurses who had variability in their profile characteristics. This study has been conducted in one geographical area of Australia, although the three recruitment sites are located in the northern, southern and eastern suburbs of the metropolitan Perth, thus allowing a varied demographic mix of the population. Nevertheless, it may be that the experiences of service providers elsewhere in Australia and in other countries could be different depending on the structure of the organisation the healthcare system in the country, the availability of support, the type of terminal illness and profile of family caregivers and their care recipients. Although nurses were encouraged to participate, nevertheless their participation was voluntary. It may well be that the nurses who chose to participate had a more positive attitude compared to those who did not participate. Not all family caregivers would have been approached to participate. As mentioned in the article on description of the trial,20 while gatekeeping cannot be ruled out, we believe that in many cases the decision to include a caregiver in the study would have been most likely influenced by the workload of the nurse on the day and how timepressured she or he felt fitting in a number of clients that need to be visited. While it may be considered a limitation in other contexts, eliciting written responses via a questionnaire has worked well for this service and has captured a breadth of opinion and an opportunity for every nurse to have a voice, in addition to being the nurses’ choice of giving feedback. Furthermore, the quantitative feedback provided a robust indication to the service about the extent to which nurses supported or otherwise the different aspects of CSNAT implementation.
Conclusion Adopting and sustaining an intervention within an organisation depend on the relevance to identified goals and priorities, available resources and existing strategies.29,32 Certainly, this CSNAT intervention seems to be aligned to all these factors for Silver Chain Hospice Care service who is exploring ways for integrating it in standard practice. In summary, this intervention proved successful as several essential criteria were met: this research was able to demonstrate the relevance of the intervention to family caregivers as reported in Aoun et al.21 and to determine that the intervention is effective in significantly reducing caregiver strain in the intervention group compared to the control group.20 Furthermore, within this research setting, our findings indicate that this intervention would be relevant to service providers and has sufficiently impacted on the nurses’ experience to facilitate translation into practice. However, within a practice setting, services need to be mindful of the considerable complex challenges
Downloaded from pmj.sagepub.com by guest on November 18, 2015
9
Aoun et al. involved in implementing evidence-based practice as captured in the multi-dimensional framework ‘Promoting Action on Research Implementation in Health Services’ (PARiHS).29,33 Acknowledgements The authors gratefully acknowledge the contribution of the Silver Chain clinical nurse consultants who facilitated the project in the service sites, the nurses in recruitment and data collection and their contribution to this survey. The contribution of family caregivers is also greatly acknowledged. This study has been undertaken by the International Collaborative on Family Caregiving Research in Palliative and End of Life Care between Curtin University in Australia, Manchester University in the United Kingdom and University of Victoria in Canada.
Declaration of conflicting interests The authors declare that there is no conflict of interest.
Funding This research was supported by an Australian Research Council linkage grant and Silver Chain (LP110100622).
References 1. Lane P, McKenna H, Ryan A, et al. The experience of the family caregivers’ role: a qualitative study. Res Theory Nurs Pract 2003; 17(2): 137–151. 2. Payne S and Morbey H. Supporting family carers: report on the evidence of how to work with and support family carers to inform the work of the Commission into the future of hospice care. Report, Help the Hospices, UK, October 2013, p. 36. 3. Aoun SM, Kristjanson LJ, Currow DC, et al. Caregiving for the terminally ill: at what cost? Palliat Med 2005; 19(7): 551–555. DOI: 10.1191/0269216305pm1053oa. 4. National Institute of Clinical Excellence (NICE). Guidance on cancer services improving supportive and palliative care for adults with cancer. Oxford: NICE, 2004, http://www. nice.org.uk 5. Commonwealth of Australia. National palliative care strategy. Barton, ACT, Australia: Commonwealth of Australia, 2010, http://www.health.gov.au/internet/main/publishing. nsf/Content/A87BC5583161BEBFCA257BF0001D3AF6/ $File/NationalPalliativeCareStrategy.pdf 6. Carstairs S and Keon WJ. Canada’s aging population: seizing the opportunity (Special Senate Committee on Aging – final report). Ottawa, ON, Canada, 2009, http://www. senate-senat.ca/age.asp 7. Ferrario SR, Cardillo V, Vicario F, et al. Advanced cancer at home: caregiving and bereavement. Palliat Med 2004; 18(2): 129–136. DOI: 10.1191/0269216304pm870oa. 8. Grande GE, Farquhar MC, Barclay SIG, et al. Caregiver bereavement outcome: relationship with hospice at home, satisfaction with care, and home death. J Palliat Care 2004; 20(2): 69–77. 9. Ewing G, Brundle C, Payne S, et al. The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study. J Pain Symptom
Manage 2013; 46(3): 395–405. DOI: 10.1016/j.jpainsymman.2012.09.008. 10. Ewing G and Grande G. Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: a qualitative study. Palliat Med 2013; 27(3): 244–256. DOI: 10.1177/0269216312440607. 11. Stirling C, Andrews S, Croft T, et al. Measuring dementia carers’ unmet need for services – an exploratory mixed method study. BMC Health Serv Res 2010; 10: 122. DOI: 10.1186/1472-6963-10-122. 12. Robinson A, Emden C, Lea E, et al. Information issues for providers of services to people with dementia living in the community in Australia: breaking the cycle of frustration. Health Soc Care Community 2009; 17(2): 141–150. DOI: 10.1111/j.1365-2524.2008.00808.x. 13. Spijker A, Vernooij-Dassen M, Vasse E, et al. Effectiveness of nonpharmacological interventions in delaying the institutionalization of patients with dementia: a meta-analysis. J Am Geriatr Soc 2008; 56(6): 1116–1128. DOI: 10.1111/j.1532-5415.2008.01705.x. 14. Keady J and Nolan M. The carer-led assessment process (CLASP): a framework for the assessment of need in dementia caregivers. J Clin Nurs 1994; 3(2): 103–108. DOI: 10.1111/j.1365-2702.1994.tb00369.x. 15. Meaney AM, Croke M and Kirby M. Needs assessment in dementia. Int J Geriatr Psychiatry 2005; 20(4): 322–329. DOI: 10.1002/gps.1284. 16. Asadi-Lari M, Packham C and Gray D. Unmet health needs in patients with coronary heart disease: implications and potential for improvement in caring services. Health Qual Life Outcomes 2003; 1(1): 26, http://www.hqlo.com/content/1/1/26 17. Hudson PL, Trauer T, Graham S, et al. A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med 2010; 24(7): 656–668. 18. Help the Hospices. Identifying the carers’ needs in the palliative setting: guide for professionals. Help the Hospices, 2009, http://www.hospiceuk.org/what-we-offer/ publications?cat=842a4112-4ccd-608d-ad24-ff0000fd3330 19. Austin L, Ewing G and Grande G. Facilitating a shift to comprehensive care-led assessment in palliative home care: the CSNAT approach (abstract presented at: 8th world research congress of the European Association for Palliative Care (EAPC): Lleida, Spain 5–7 June 2014). Palliat Med 2014; 28(6): 538–913. DOI: 10.1177/ 0269216314532748. 20. Aoun SM, Grande G, Howting D, et al. The impact of the Carer Support Needs Assessment Tool (CSNAT) in community palliative care using a Stepped Wedge Cluster Trial. PLos One. 2015 Apr 7; 10(4):e0123012. DOI: 10.1371/ journal.pone.0123012 21. Aoun S, Deas K, Toye C, et al. Supporting family caregivers to identify their own needs in end of life care: qualitative findings from a Stepped Wedge Cluster Trial. Palliat Med. Epub ahead of print 2 February 2015. DOI: 10.1177/0269216314566061. 22. Hsieh HF and Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15(9): 1277–1288. DOI: 10.1177/1049732305276687.
Downloaded from pmj.sagepub.com by guest on November 18, 2015
10
Palliative Medicine
23. Guest G, MacQueen KM and Namey EE. Applied thematic analysis. London: SAGE, 2012. 24. Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. Crown Copyright, 2008, https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-qualitycare-for-adults-at-the-end-of-their-life 25. Fineout-Overholt E, Melnyk BM and Schultz A. Transforming health care from the inside out: advancing evidence-based practice in the 21st century. J Prof Nurs 2005; 21(6): 335–344. 26. World Health Organization. World report on knowledge for better health: strengthening health systems. Geneva: World Health Organization, 2004. 27. Gagnon ML. Moving knowledge to action through dissemination and exchange. J Clin Epidemiol 2011; 64(1): 25–31. DOI: 10.1016/j.jclinepi.2009.08.013. 28. Glasgow RE and Emmons KM. How can we increase translation of research into practice? Types of evidence needed. Annu Rev Public Health 2007; 28: 413–433.
29. Rycroft-Malone J, Harvey G, Seers K, et al. An exploration of the factors that influence the implementation of evidence into practice. J Clin Nurs 2004; 13(8): 913–924. DOI: 10.1111/j.1365-2702.2004.01007.x. 30. Thompson DS, Estabrooks CA, Scott-Findlay S, et al. Interventions aimed at increasing research use in nursing: a systematic review. Implement Sci 2007; 2(1): 15. 31. Brown CE, Wickline MA, Ecoff L, et al. Nursing practice, knowledge, attitudes and perceived barriers to evidence-based practice at an academic medical center. J Adv Nurs 2009; 65(2): 371–381. DOI: 10.1111/j.1365-2648.2008.04878.x. 32. Institute of Medicine. Integrating research and practice: health system leaders working together toward high-value care (workshop summary). Institute of Medicine, 2014, http://www.iom.edu/IntegratingResearchPractice 33. Kitson AL, Rycroft-Malone J, Harvey G, et al. Evaluating the successful implementation of evidence into practice using the PARiHS framework: theoretical and practical challenges. Implement Sci 2008; 3(1): 1.
Downloaded from pmj.sagepub.com by guest on November 18, 2015
