Gail Ewing

A systematic review of instruments related to family caregivers of palliative care patients

Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.

Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study

Background: Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers’ support needs that is suitable for use in end-of-life home care practice. Aims: To obtain carers’ perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice. Design: Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach. Setting/participants: 75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK. Results: Carers’ needs fell into two distinct groupings of key support areas or ‘domains’: support to enable them to provide care for their relative and more direct personal support for themselves. Many aspects of supportive input were common across domains, for example, anticipatory information, explanations or being included in the care process. Therefore, the tool was designed as a screening measure, to identify support needs requiring further detailed assessment. Conclusions: The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based direct measure of carers’ support needs in 14 domains. It is short but comprehensive in approach and thus suitable for both end-of-life care research and practice. Further work has been undertaken to test its psychometric properties.

Using mixed methods to develop and evaluate complex interventions in palliative care research.

Background: there is increasing interest in combining qualitative and quantitative research methods to provide comprehensiveness and greater knowledge yield. Mixed methods are valuable in the development and evaluation of complex interventions. They are therefore particularly valuable in palliative care research where the majority of interventions are complex, and the identification of outcomes particularly challenging. Aims: this paper aims to introduce the role of mixed methods in the development and evaluation of complex interventions in palliative care, and how they may be used in palliative care research. Content: the paper defines mixed methods and outlines why and how mixed methods are used to develop and evaluate complex interventions, with a pragmatic focus on design and data collection issues and data analysis. Useful texts are signposted and illustrative examples provided of mixed method studies in palliative care, including a detailed worked example of the development and evaluation of a complex intervention in palliative care for breathlessness. Key challenges to conducting mixed methods in palliative care research are identified in relation to data collection, data integration in analysis, costs and dissemination and how these might be addressed. Conclusions: the development and evaluation of complex interventions in palliative care benefit from the application of mixed methods. Mixed methods enable better understanding of whether and how an intervention works (or does not work) and inform the design of subsequent studies. However, they can be challenging: mixed method studies in palliative care will benefit from working with agreed protocols, multidisciplinary teams and engaging staff with appropriate skill sets.

Death at home unlikely if informal carers prefer otherwise: implications for policy.

There is currently a considerable emphasis on enabling patients to die at home if this is their wish.1–3 Patient preference for a death at home increases likelihood of the patient actually dying there.4,5 However, likelihood of dying at home depends on the presence and ability of informal carers to provide home care.6 This can place considerable burden on informal carers, and their preferences regarding home care may not coincide with those of the patient.7 Only a few studies have actually considered the preference of the carer as well as that of the patient.4,8,9 Although one half or more of carers in these studies report a preference for death at home, at least initially, the proportion preferring home death is consistently smaller for carers than for patients. Little research has considered the extent to which such discrepancy between the expressed wishes of patients and carers influences likelihood of dying at home. A small study by Cantwell, et al.10 suggests there is a increased likelihood of death at home when both patient and carer express preference for home, but discrepancies were not investigated. We report data that enabled us to assess whether discrepancy between patient and carer view on preferred place of death influenced patients’ likelihood of dying at home. This was part of a larger study into preferred place of death, quality of care and carer bereavement outcome. We considered anonymous patient records of three hospice at home (H@Hs) services that routinely recorded both the patient’s and the main carer’s preferred place of care or death, as well as actual place of death. H@H recording practices differed somewhat in recording of place of care and death, and although the two are not identical, their boundaries blur towards the end of life. In the present analysis, they are grouped into one category. A total of 480 patients had been referred to the three H@Hs and died within the four month study period. Of these, H@Hs recorded the preferred place of care/death of the carer in 298 (62.1%) and the patient’s preference in 324 (67.5%) cases. Patient’s or carer’s preference was recorded in 367 (76.5%) of 480 cases in total. There were 255 patient and carer pairs in which preference could be compared. The main difference in views related to home care/death. Although 201 (78.8%) patients preferred home, only 169 (84.1%) of their carers concurred and 32 (15.9%) disagreed, with the main alternative preference being hospice (25 carers). Of 39 patients who preferred hospice, 35 of their carers concurred, whereas four carers preferred home. Otherwise, there were no discrepancies between patient and carer views. For the 201 patients who preferred home, likelihood of actually dying at home depended on agreement between patient and carer preference. Where both patient and carer preferred a home death, 122 (72.2%) of 169 patients died at home. Where the carer disagreed with the patient’s preference, only 8 (25.0%) of 32 patients died at home (X2 = 26.225, df = 1, P < 0.001). When both patient and carer preferred hospice, 25 (71%) of 35 patients died in hospice, but when the carer disagreed, three (75%) of four died in hospice and one at home. Carers’ preference was not related to their relationship to the patient. Percentages preferring home was similar for spouses and children (accounting for 61% and 29% of the sample, respectively) and somewhat lower for ‘other’, but not significantly so. Patients who have been referred to H@H towards the end of life probably receive more palliative care support and are more likely to desire death at home compared with dying patients in general. Our results therefore suggest that even within a relatively highly motivated, wellsupported patient population, the likelihood of dying at home is dramatically reduced if the main carer does not express a preference for death at home. Furthermore, more carers may have preferred death elsewhere than were recorded as there may be implicit pressure on carers to agree with patient’s wishes.7 The role of carers in delivering patient choice is increasingly recognised. However, our results suggest that if carers do not agree with the patient’s choice, service provider and policy aims of enabling patients to die at home, if this is their wish,1–3 are unlikely to be met.

Informal carer bereavement outcome: relation to quality of end of life support and achievement of preferred place of death.

This study investigated (a) whether carer bereavement outcome is affected by the achievement of the patient’s and/or carers’ preferred place of death and (b) the relationship between carer satisfaction with end of life care and bereavement outcome. Participants were 216 carers of patients referred to hospice at home (H@H). Prospective recording of preferred and actual place of death were obtained from H@H records. Carers’ level of grief and mental health and assessment of end of life care were obtained through postal survey three to four months post-bereavement. Fulfilment of carer preference for place of death only related to post-bereavement mental health at P < 0.1. Adequacy of psychological support showed the clearest relationship with bereavement outcome both in univariate and multivariate analyses. The level of support, particularly psychological, may be more important for carers’ bereavement outcome than achievement of the preferred place of death for the patient.

Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial

Introduction: The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care. Aim: To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care. 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. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis. Results: The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced. Conclusion: Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers’ needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of family caregivers.

Using observation as a data collection method to help understand patient and professional roles and actions in palliative care settings

Background: Observational research methods are important for understanding people’s actions, roles and behaviour. However, these techniques are underused generally in healthcare research, including research in the palliative care field. Aim: The aim in this paper is to place qualitative observational data collection methods in their methodological context and provide an overview of issues to consider when using observation as a method of data collection. This paper discusses practical considerations when conducting palliative care research using observation. Findings: Observational data collection methods span research paradigms, and qualitative approaches contribute by their focus on ‘natural’ settings which allow the explanation of social processes and phenomena. In particular, they can facilitate understanding of what people do and how these can alter in response to situations and over time, especially where people find their own practice difficult to articulate. Observational studies can be challenging to carry out: we focus on the potentially problematic areas of sampling, consent and ethics, data collection and recording, data management and analysis. Conclusion: Qualitative observational data collection methods can contribute to theoretical and conceptual development and the explanation of social processes in palliative care. In particular this contribution to understanding care structures and processes should improve understanding of patients’ experiences of their care journey and thus impact on care outcomes.

The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial

Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers’ needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group 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). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain.

Enabling a family caregiver-led assessment of support needs in home-based palliative care: Potential translation into practice:

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.

Developing a person-centred approach to carer assessment and support

Community nurses play an important role in providing palliative care and support for patients and carers at home. The Carer Support Needs Assessment Tool (CSNAT) provides practitioners with an evidence-based comprehensive tool to use with carers in palliative home care. As a practice tool, the CSNAT uses a person-centred approach-that is, the process of carer assessment and support is facilitated by practitioners but is carerled. In this paper, the CSNAT research team provides an overview of the development of the tool and the benefits for both carers and practitioners arising from using the CSNAT as a person-centred approach in practice. The authors outline the five stages of the CSNAT approach to assist practitioners wishing to implement the CSNAT in practice.