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

Designing information for families caring for people with dementia

A health communication project, to develop information to support families caring for people with dementia, is described. Close collaboration of designers with carers – ‘experts by experience’ – and clinicians and other professionals – ‘experts by training’ – was used. Carer consultation led to a printed (rather than digital) handbook. An iterative process of carer and clinician consultation and design shaped the material form of the handbook. Carers’ needs for different kinds of information were met by a modular approach, and tailored module design. Evaluation following distribution of the handbook suggested it improved carers’ understanding of dementia significantly compared to the information from diverse sources supplied previously. It did not, however, influence people’s confidence in their ability to care, which appeared to be supported better through carer education courses. The specific contribution of information design and its potential for delivering return on investment are discussed

An evaluation of Canada's Compassionate Care Benefit from a family caregiver's perspective at end of life

<p>Abstract</p> <p>Background</p> <p>The goal of Canada's Compassionate Care Benefit (CCB) is to enable family members and other loved ones who are employed to take a temporary <it>secured </it>leave to care for a terminally ill individual at end of life. Successful applicants of the CCB can receive up to 55% of their average insured earnings, up to a maximum of CDN$435 per week, over a six week period to provide care for a gravely ill family member at risk of death within a six month period, as evidenced by a medical certificate. The goal of this study is to evaluate the CCB from the perspective of family caregivers providing care to individuals at end of life. There are three specific research objectives. Meeting these objectives will address our study purpose which is to make policy-relevant recommendations informed by the needs of Canadian family caregivers and input from other key stakeholders who shape program uptake. Being the first study that will capture family caregivers' experiences and perceptions of the CCB and gather contextual data with front-line palliative care practitioners, employers, and human resources personnel, we will be in a unique position to provide policy solutions/recommendations that will address concerns raised by numerous individuals and organizations.</p> <p>Methods</p> <p>We will achieve the research goal and objectives through employing utilization-focused evaluation as our methodology, in-depth interviews and focus groups as our techniques of data collection, and constant comparative as our technique of data analysis. Three respondent groups will participate: (1) family caregivers who are providing or who have provided end of life care via phone interview; (2) front-line palliative care practitioners via phone interview; and (3) human resources personnel and employers via focus group. Each of these three groups has a stake in the successful administration of the CCB. A watching brief of policy documents, grey literature, media reports, and other relevant items will also be managed throughout data collection.</p> <p>Discussion</p> <p>We propose to conduct this study over a three year period beginning in October, 2006 and ending in October, 2009.</p

Safety in home care: A research protocol for studying medication management

<p>Abstract</p> <p>Background</p> <p>Patient safety is an ongoing global priority, with medication safety considered a prevalent, high-risk area of concern. Yet, we have little understanding of the supports and barriers to safe medication management in the Canadian home care environment. There is a clear need to engage the providers and recipients of care in studying and improving medication safety with collaborative approaches to exploring the nature and safety of medication management in home care.</p> <p>Methods</p> <p>A socio-ecological perspective on health and health systems drives our iterative qualitative study on medication safety with elderly home care clients, family members and other informal caregivers, and home care providers. As we purposively sample across four Canadian provinces: Alberta (AB), Ontario (ON), Quebec (QC) and Nova Scotia (NS), we will collect textual and visual data through home-based interviews, participant-led photo walkabouts of the home, and photo elicitation sessions at clients' kitchen tables. Using successive rounds of interpretive description and human factors engineering analyses, we will generate robust descriptions of managing medication at home within each provincial sample and across the four-province group. We will validate our initial interpretations through photo elicitation focus groups with home care providers in each province to develop a refined description of the phenomenon that can inform future decision-making, quality improvement efforts, and research.</p> <p>Discussion</p> <p>The application of interpretive and human factors lenses to the visual and textual data is expected to yield findings that advance our understanding of the issues, challenges, and risk-mitigating strategies related to medication safety in home care. The images are powerful knowledge translation tools for sharing what we learn with participants, decision makers, other healthcare audiences, and the public. In addition, participants engage in knowledge exchange throughout the study with the use of participatory data collection methods.</p

A systematic review of psychosocial interventions for family carers of palliative care patients

<p>Abstract</p> <p>Background</p> <p>Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness. A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers. We wanted to discern whether or not the evidence base to support family carers has improved. Furthermore, undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration <url>http://www.centreforpallcare.org</url>.</p> <p>Methods</p> <p>A systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade. The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients. Studies were graded to assess their quality.</p> <p>Results</p> <p>A total of fourteen studies met the inclusion criteria. The focus of interventions included psycho-education, psychosocial support, carer coping, symptom management, sleep promotion and family meetings. Five studies were randomised controlled trials, three of which met the criteria for the highest quality evidence. There were two prospective studies, five pre-test/post-test projects and two qualitative studies.</p> <p>Conclusions</p> <p>The systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade. More rigorous intervention research is required in order to meet the supportive care needs of family carers of palliative care patients.</p

Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups

A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Care Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time.An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers’ feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation of the evolving caregiver needs at different stages of the disease