Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care

Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease

Background: Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored “goodness of fit” support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role

Current care services provided for patients with COPD in the Eastern province in Saudi Arabia: a descriptive study

Mohammed E Alsubaiei,1,2 Paul A Cafarella,1,2 Peter A Frith,1,2 R Doug McEvoy,2,3 Tanja W Effing1,2 1Repatriation General Hospital, Department of Respiratory Medicine, Adelaide, SA, Australia; 2Flinders University, School of Medicine, Adelaide, SA, Australia; 3Repatriation General Hospital, Sleep and Respiratory Medicine, Southern Adelaide Local Health Network, Daw Park, SA, Australia Background: COPD is a leading cause of morbidity and mortality worldwide. The prevalence rate of COPD in the general Saudi population is estimated to be 2.4% and 14.2% among smokers. Not much is known about current health care services for patients with COPD in Saudi Arabia. The objective of this study was to determine the current care services for patients with COPD provided by government hospitals in the Eastern province of Saudi Arabia.Methods: A cross-sectional study was conducted in the Eastern province of Saudi Arabia. Directors of the Department of Internal Medicine from all 22 general government hospitals that are under the responsibility of the Ministry of Health or the Ministry of Higher Education in this region were asked to participate. Data were collected using a questionnaire.Results: The study results indicated that there are limited hospital facilities for patients with COPD: no respiratory departments in any of the included hospitals, no spirometry in 77.3% of the hospitals, no intensive care units in 63.7% of the hospitals, and no pulmonary rehabilitation program in any of the hospitals. Among the included 22 hospitals, 24 respiratory physicians, 29 respiratory therapists, and three physiotherapists were involved in COPD care.Conclusion: In conclusion, current care services provided by government hospitals in the Eastern province of Saudi Arabia for patients with COPD do not meet international recommendations for COPD management. Increased awareness, knowledge, and implementation of COPD guidelines by health care providers will most probably improve COPD management in Saudi Arabia. In addition, the government could improve dissemination of information about COPD management through national programs and by offering specific education regarding respiratory diseases. Keywords: health services, pulmonary disease, chronic obstructive, Saudi Arabia, hospitals, genera