Chris Toye

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

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.

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.

An Evidence‐Based Program to Improve Analgesic Practice and Pain Outcomes in Residential Aged Care Facilities

Pain is common in individuals living in residential aged care facilities (RACFs), and a number of obstacles have been identified as recurring barriers to adequate pain management. To address this, the Australian Pain Society developed 27 recommendations for comprehensive good practice in the identification, assessment, and management of pain. This study reviewed preexisting pain management practice at five Australian RACFs and identified changes needed to implement the recommendations and then implemented an evidence‐based program that aimed to facilitate better pain management. The program involved staff training and education and revised in‐house pain‐management procedures. Reviews occurred before and after the program and included the assessment of 282 residents for analgesic use and pain status. Analgesic use improved after the program (P < .001), with a decrease in residents receiving no analgesics (from 15% to 6%) and an increase in residents receiving around‐the‐clock plus as‐needed analgesics (from 24% to 43%). There were improvements in pain relief for residents with scores indicative of pain, with Abbey pain scale (P = .005), Pain Assessment in Advanced Dementia Scale (P = .001), and Non‐communicative Patients Pain Assessment Instrument scale (P < .001) scores all improving. Although physical function declined as expected, Medical Outcomes Study 36‐item Short‐Form Survey bodily pain scores also showed improvement (P = .001). Better evidence‐based practice and outcomes in RACFs can be achieved with appropriate training and education. Investing resources in the aged care workforce using this program improved analgesic practice and pain relief in participating sites. Further attention to the continued targeted pain management training of aged care staff is likely to improve pain‐focused care for residents.

Development and pilot testing of the “focus on the person” form: Supporting care transitions for people with dementia

When people with dementia are hospitalised, their capacity to communicate with the staff may be limited, compounding risks of distress and other adverse outcomes. Opportunities for carers to share relevant information to inform appropriate person-centred care are also limited. This four-phase mixed methods study aimed to develop an evidence-based family carer–staff communication form, the Focus on the Person form, to address this concern. In Phase I, a literature review plus consultation with clinicians and carers informed form development. In Phase II, the professionally formatted form was piloted by 31 family carers, who were then interviewed about their experiences. These data, combined with data from 30 hospital staff members who participated in Phase III focus groups, led to final, Phase IV, refinements of the form. The form now provides an opportunity for families to inform the person-centred care of people with dementia in hospital, potentially improving outcomes for this vulnerable group.