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.

Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: a population-based national study.

BACKGROUND: Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice.

Factors influencing management of chronic respiratory diseases in general and chronic obstructive pulmonary disease in particular in Saudi Arabia: An overview.

The prevalence of chronic obstructive pulmonary disease in Saudi Arabia is 4.2% among the general population and 14.2% among smokers. Studies showed that management of respiratory diseases is inadequate. In this article, we have elaborated on how factors as health economic factors, lack of health-care providers, culture, attitude, lifestyle (such as smoking and physical inactivity), and lack of adherence to the evidence-based practice guidelines may influence chronic respiratory disease management in Saudi Arabia. We have to conclude that these factors should be taken into account while seeking to improve and optimize the quality of care for patients with respiratory diseases in Saudi Arabia.

Barriers for setting up a pulmonary rehabilitation program in the Eastern Province of Saudi Arabia.

BACKGROUND: Pulmonary rehabilitation (PR) programs proven to be one of the most effective treatment options for respiratory diseases; yet, they are not well-established in hospitals in Saudi Arabia. AIM: To determine the main barriers for setting up PR programs in Saudi Arabia. METHODS: A cross-sectional study was conducted in the Eastern Province of Saudi Arabia. Health care providers involved in treatment of chronic obstructive pulmonary disease (COPD) patients were recruited from 22 general government hospitals. Data were collected using questionnaires: Full version if they had heard about PR before the study, and a short version if they had not heard about PR before. RESULTS: A total of 123 health care providers were recruited (physicians [n = 44], nurses [n = 49], and respiratory therapists/technicians [n = 30]). Only 3.2% of the recruited health care providers had heard about PR programs before. According to the health care providers, the main barriers for setting up PR programs were a lack of (1) hospital capacity (75.6%), (2) trained health care providers (72.4%), and (3) funds (48.0%). There were significant differences in barriers reported by the health care providers. Compared to physicians, nurses were more likely to nominate the PR costs as a barrier (18.0% vs. 38.8%; P < 0.05). CONCLUSION: There is a worrisome lack of knowledge regarding content and benefits of PR programs among Saudi health care providers treating COPD patients. These findings imply that improving awareness and increasing education of the health care providers regarding PR will be required before PR can be more widely implemented as an integral treatment modality for patients with COPD in Saudi Arabia.

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

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.

Development of a self-treatment approach for patients with COPD and comorbidities: an ongoing learning process.

BACKGROUND: Patient-initiated action plans are an important component of COPD self-management (SM) interventions. When integrated into SM interventions, these action plans have proven to be effective in reducing exacerbation severity, hospitalisations, and costs and in improving health status in patients with COPD without severe comorbidities. Because of overlap in symptoms, a self-treatment (ST) approach that focuses solely on traditional symptoms of COPD is inadequate for patients with COPD and comorbidities. The COPE-III SM intervention combines (I) patient-initiated action plans that are tailored to the individual's co-morbid disease(s), and (II) ongoing nurse support. In this paper we provide information regarding the integration of information from two previous COPD SM studies (COPE I and II) in the development of the current COPE-III ST approach. MATERIALS AND METHODS: COPE-III ST materials include daily symptom diaries and action plans that take patient's common comorbidities [chronic heart failure (CHF), anxiety, depression, ischaemic heart disease (IHD), and diabetes] into account. The comorbid diary and action plans components were developed in collaboration with multiple disease-experts. RESULTS: Previous SM studies have highlighted some essential topics that need to be considered when developing a SM or ST approach: 'when to initiate ST', 'how to optimize materials and safety', and 'how to achieve behavioural change'. In the COPE-III study, ST is initiated after a significant change in symptoms. This is consistent with the COPE-II approach and was implemented because disease symptoms are often present even when patients are stable. We have tried to ensure patient safety by providing an easily accessible case-manager to patients throughout their involvement in the study. Furthermore, a psychologist has ensured the use of behavioural change techniques throughout the intervention. CONCLUSIONS: We should continue to learn from our experiences with SM interventions to further optimize future SM and ST interventions. The use of materials that are suitable for different levels of patient literacy and the training of health care providers are other points of improvement.

Treatments for anxiety and depression in patients with chronic obstructive pulmonary disease: a literature review.

Chronic obstructive pulmonary disease (COPD) is a serious contemporary health issue. Psychological co-morbidities such as anxiety and depression are common in COPD. Current evidence for treatment options to reduce anxiety and depression in patients with COPD was examined. There is evidence available for the efficacy of pharmacological treatments, cognitive behavioural therapy, pulmonary rehabilitation, relaxation therapy and palliative care in COPD. Therapeutic modalities that have not been proven effective in decreasing anxiety and depression in COPD, but which have theoretical potential among patients, include interpersonal psychotherapy, self-management programmes, more extensive disease management programmes, supportive therapy and self-help groups. Besides pulmonary rehabilitation that is only available for a small percentage of patients, management guidelines make scant reference to other options for the treatment of mental health problems. The quantity and quality of research on mental health treatments in COPD have historically been insufficient to support their inclusion in COPD treatment guidelines. In this review, recommendations regarding assessment, treatment and future research in this important field were made.

Chronic obstructive pulmonary disease (COPD) is a major personal and public health burden in Australia.

OBJECTIVE: Chronic obstructive pulmonary disease (COPD) is a serious disease that is increasing in prevalence, yet is under-diagnosed and under-recognised in Australia. The goal is to bring this to the attention of public health and offer recommendations in order to reduce the present and future burden from COPD. APPROACH: The increase in prevalence, particularly in women, and the impact upon personal and public health demonstrate that COPD is a major public health issue. A proactive approach for public health is suggested, including strategies to increase smoking cessation among at-risk groups, reduce delayed diagnosis, extend disease management strategies, and establish an Australian research base. CONCLUSION: The reduction of the burden from COPD is contingent upon a proactive approach by public health that includes approaching it as a research priority and the provision of adequately resourced prevention and management strategies.