An exploration of the factors influencing the uptake of non-invasive ventilation by people with motor neurone disease in Australia: a qualitative study of patient and health professional perspectives

BackgroundFamily caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care.MethodsA psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver’s need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.ResultsFrom the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers’ individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.ConclusionsThe theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

Investigations into 'inappropriate' use of emergency health services are limited by the lack of definition of what constitutes a health emergency. Position papers from Australian and international sources emphasise the patient's right to access emergency healthcare, and the responsibility of emergency health care workers to provide treatment to all patients. However, discordance between the two perspectives remain, with literature labelling patient use of emergency health services as 'inappropriate'. To define a 'health emergency' and compare patient and health professionals perspectives. A sample of 600 emergency department (ED) patients were surveyed about a recent health experience and asked to rate their perceived urgency. This rating was compared to their triage score allocated at the hospital ED. No significant relationship was found between the two ratings of urgency (P=0.51). CONCLUSIONS; Differing definitions of a 'health emergency' may explain patient help-seeking behaviour when accessing emergency health resources including hospital ED and ambulance services. A new definition of health emergency that encapsulates the health professional and patient perspectives is proposed. An agreed definition of when emergency health resources should be used has the potential to improve emergency health services demand and patient flow issues, and optimise emergency health resource allocation.

Purpose: People with motor neuron sisease require adaptive equipment to enhance life quality. This study aimed to examine total and concurrent equipment items prescribed with phenotype consideration.Methods: A prospective, observational consecutive cohort study was undertaken. Data regarding Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised, phenotype, symptom onset and Functional Independence Measure (inpatients only) was recorded. Equipment utilized was coded by therapist as: speech devices; transfer devices; mobility devices (including power wheelchairs); orthoses; activities of daily living equipment; assisted technology and home modification equipment.Results: Two hundred and seventy-three people with motor neuron disease participated, mean age 67 years, mean amyotrophic Lateral Sclerosis Functional Rating Scale-Revised score 32, a moderate level of disability. Equipment items per participant ranged from 0 to 20, median 5. The electric lift recliner chair was the most commonly used equipment item, used by 51.2% of the cohort. There was a statistically significant difference in equipment use between flail leg and bulbar (Md 11, 3 items, respectively; p = .005), and flail leg and cervical phenotypes (Md 11, 3.5 items respectively; p = .009).Conclusions: People with motor neuron disease have high equipment needs to optimize quality of life. Information regarding phenotype relative to equipment requirement, and most frequently prescribed equipment items can assist health-care providers anticipate equipment needs, burden and intensity for those with motor neuron disease.Implications for rehabilitationPeople with motor neuron disease have high concurrent equipment needs.Electric recliner lift chairs are the most frequently prescribed equipment item by those with motor neuron disease.There is variation in concurrent equipment needs relative to motor neuron disease phenotype.

Patients with incurable end-stage cancer (IESC) who are parenting minor-age children often experience parenting-related distress. Parenting concerns are not always addressed as part of routine hospital-based psychosocial care. Currently, there is a lack multidisciplinary health professional (HP) perspectives in this area. An exploratory study of hospital-based HP perspectives of adult patients' and coparents' parenting experiences, support needs, and parenting supportive care practice was conducted. Twelve multidisciplinary HPs from one Australian tertiary hospital participated in a semistructured focus group and interviews. Data were audio recorded, transcribed, and analyzed using thematic analysis. Results showed HPs were cognizant of patients' and coparents' diverse parenting support needs and experiences and other aspects that comprise best practice. However, multilevel organization, HP, and patient/coparent barriers impeded optimal practice. Barriers included a nonsystemized approach to screening patients' parenting status and parenting support needs, inadequate resources, limited professional support, hospital environment, and parent psychosocial factors. This article provides feasible options for addressing practice barriers. Reviewing what factors influence optimal parenting focus from interdisciplinary HP perspectives helped identify potential strategies that could influence a shift from medical-focused care to more holistic family-focused patient care.

Barriers to Cooperation With Family Members in Psychiatric Care in Turkey: Perspectives of Health Professionals and Family Caregivers.

BackgroundThere is growing appreciation of the role health literacy plays in population health and health care design. Health literacy encompasses an individual’s capacity to manage their health and the responsiveness of the health system. Our aim was to identify the health literacy strengths and challenges in an Australian cohort living with motor neurone disease (MND), including both people living with the disease and their carers.MethodsThis study used the Health Literacy Questionnaire and eHealth Literacy Questionnaire for health literacy assessment. Using a secure online platform, an anonymous survey was disseminated which included demographic data and clinical measurements. Descriptive statistical analysis and cluster analysis were employed to describe the sample and to identify different health literacy patterns in subgroups of people living with MND and their carers.ResultsA total of 227 people participated (171 people living with MND and 56 carers). Cluster analysis generated fifteen cluster profiles for the cohort living with MND and seven cluster profiles for carers. The variability and potential significance of patterns of health literacy strengths and challenges within the MND community are described. There was extensive diversity within the sampled population, with a mix of sociodemographic backgrounds across each cluster profile.ConclusionsThe health literacy cluster profiles created from this study provide insight into the full spectrum of where the challenges and strengths exist for individuals and subgroups of people managing this fatal disease. The results from this study pave the way for generating system wide interventions that address health literacy diversity, to create more enabling health care environments for all those affected by MND.

PurposeThe purpose of this paper is to determine if issues relevant to multidisciplinary rehabilitation care from the perspective of the patient and caregiver can be addressed utilising the International Classification of Functioning, Disability and Health (ICF) framework; also to identify gaps in evidence and service provision to optimise clinical care.Design/methodology/approachParticipants with motor neurone disease (MND) (n=44) and their caregivers (n=37) were recruited from a tertiary MND clinic. Cross‐sectional predominantly qualitative methodology was used to explore the perspectives of MND patients and their caregivers on disability and service gaps. Their disability experience and relevant environmental factors were then mapped onto the ICF framework. Personal factors were described. The impact of MND on caregivers was also described.FindingsThere were significant gaps in MND care. In particular, the need for coordinated care by neurology, rehabilitation and palliative care services (“neuropalliative rehabilitation” model) was highlighted. The ICF framework adequately incorporated patient‐and caregiver‐ reported disability in MND.Originality/valueThis is the first review that the authors can identify, that lays the foundation for development of an ICF “Core set” (expert‐selected ICF categories that should be addressed in multidisciplinary care settings) for MND, which could improve consensus of care and communication amongst treating clinicians.

Motor neuron disease (MND) is a heterogeneous group of neurodegenerative disorders defined by a progressive upper motor neuron (UMN) and lower motor neuron (LMN) loss in a varying combination, encompassing...

To evaluate problems after head and neck cancer (HNC) from the multidisciplinary team perspective; to classify the results using the International Classification of Functioning, Disability, and Health (ICF); and to compare the results with a patient perspective. Internet-based survey. There were 103 participants from 27 countries: 50 physicians (otolaryngologists, maxillofacial specialists, and radiation and medical oncologists) and 53 nonphysicians (dentists, psychologists, physiotherapists, speech swallowing therapists, nurses, and social workers). Health professionals involved in the treatment of HNC were asked about relevant problems. The survey was Internet based and included 5 questions, 1 for each of the ICF components: Body Functions, Body Structures, Activities and Participation, and contextual Environmental and Personal factors. Answers were translated into ICF categories by 2 independent researchers, and frequencies were calculated. The results were compared with the outcomes of patient interviews based on similar questions. A total of 3643 different answers translated into the ICF using 160 different second-level ICF categories. Less than 1% of answers were not covered by the ICF. There was high consistency in the ratings of food ingestion, pain, and the relevance of the immediate family. In general, health professionals tended to emphasize aspects of anatomical defects and body image, whereas areas of speech and exercise tolerance functions were more often named by patients. The ICF seems to be a comprehensive tool for classifying problems after HNC from the multidisciplinary health professional perspective. There are important differences between the health professional and patient perspectives. We should be aware of this during cancer follow-up sessions and in the creation of rehabilitation plans.

Motor neurone disease (MND) or amyotrophic lateral sclerosis (ALS) is a devastating, neurological condition. It is a progressive disease that attacks the nerves in the brain and spinal cord, leading to progressive weakness and wasting of muscles. This can lead to difficulties in walking, speech, eating, drinking and breathing (MND Association, 2016). MND is a rapidly progressive disease with death usually occurring 2–5 years from onset of first symptom. Diagnosis is usually made around 12 months from first symptom, with the diagnosis typically being made around the midpoint (50% of total disease duration elapsed) of the disease pathway (Mitchell et al, 2010). Although it is progressive, the rate and nature of progression can be unpredictable, with damage to affected areas occurring in no specific order (MND Association, 2016). The incidence of MND in England, Wales and Northern Ireland is approximately 1–2 cases per 100 000 people per year, very similar to multiple sclerosis. However, due to the rapid progression of MND the prevalence is only about 4–5 per 100 000 compared to about 50 per 100 000 for MS. (MND Association, 2015). People with MND are said to have a series of losses, including the: ■Loss of movement ■Loss of speech ■Loss of ability to eat, drink and breathe. They can have many health and social care professionals involved in their care at any one time. Although often grateful for the support and advice, it can be overwhelming and patients are often confused about roles (Oliver and Webb, 2000). The management of MND is usually provided by a multidisciplinary team based in the hospital and community. There is no cure for MND, with treatment limited to one drug, Riluzole, known to extend survival by only 2–3 months, and has been recommended by the National Institute of Health and Care Excellence (NICE, 2001). The main areas of intervention, are therefore symptom management, and supportive, including interventions to improve quality of life. These may include enteral feeding (Miller et al, 2012; Stavroulakis et al, 2014) and ventilation (Baxter et al, 2013). The physical manifestations of MND/ALS are well known and widely researched. In comparison cognitive impairment in MND is less well recognised.

Background and objectivesThe progressive character of dementia usually leads to a continuously increasing need for support. There is some evidence of late use of professional support during the disease course. We aim to provide an overview of aspects influencing access and use of formal care in dementia from the perspective of health and social care professionals. Additionally, the perspectives of professionals and people with dementia/informal carers will be compared.MethodsWe conducted a scoping review with a systematic literature search in Medline via Ovid in January 2019 and updated this in April 2020 and in May 2021. Publications were considered eligible when focusing on influencing aspects of the use of formal care or support for people with dementia in an outpatient setting from the perspective of health professionals. Included publications were critically appraised using the Mixed Method Appraisal Tool. We identified aspects of access to and use of formal care and support services. A consultation exercise with three specialised trained dementia care nurses was conducted to validate our results.ResultsWe included 29 studies: n = 20 qualitative, n = 6 quantitative-descriptive, n = 3 mixed-methods. Various support services were identified, but a focus was on services for diagnostic and treatment of dementia. A wide range of influencing aspects (n = 15) describe the access to and use of formal care services. Aspects related to the complexity and structure of the healthcare system and the competence of professionals were frequently addressed. Second, attitudes and expectations of professionals, and experiences with people with dementia and their informal carers were identified. The dementia care nurses highlighted the importance of coordinated care to enhance dementia-specific competencies.ConclusionsHealth and social care professionals still describe barriers in accessing and using formal care due to various influences. Ways to improve access to and use of professional support in dementia should consider individual and system-level activities, as well as overarching aspects. Important topics are therefore education and training of professionals and coordinated dementia-specific care to provide adequate support for people with dementia and their relatives. Several professions may be involved in this increasingly important field, e.g., nurses with a dementia-specific training like dementia care nurses.

PurposeBreakthrough cancer pain (BtCP) is a prevalent health issue which is difficult to manage. A plethora of quantitative research in this area exists. There is a paucity of research on the perspectives of health professionals and patients surrounding domains impacting effective treatment, including definitions of BtCP, treatment, and education opportunities. This review aims to identify and synthesize the extent of qualitative research exploring health professional and patient perspectives of BtCP.MethodsA systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) approach was undertaken. The approach was registered with Prospero. MEDLINE, EMBASE, and Web of Science were searched for peer-reviewed literature published any date prior to May 19, 2022. Eligible sources must have considered health professional and/or patient perspectives of BtCP. A narrative synthesis approach was utilized.ResultsThree sources met the review criteria. One source explored nurse perspectives, while two sources explored patient perspectives. Study quality was moderate to high. Overlapping themes across the three studies included communication, defining BtCP, impact of BtCP, management of BtCP, perceptions of BtCP, analgesia and pain relief, and training and professional development.ConclusionGiven limited research investigating clinician and patient perspectives of BtCP, a rich understanding informed by exploratory qualitative methods around identification, best management strategies, professional development, and factors promoting and inhibiting best practice remains unclear. Further qualitative inquiry is warranted, and it is expected such research will inform BtCP clinical guidelines.

Previous reports indicate that motor neuron disease (MND) may rarely be associated with systemic cancer. We have encountered 14 patients with MND and cancer who formed three distinct groups. Group 1: Three patients developed a rapidly progressive MND, less prominent symptoms of involvement of other areas of the nervous system, and anti-Hu antibodies. Group 2: Five women developed signs of upper motor neuron (UMN) disease, initially resembling primary lateral sclerosis (PLS), and breast cancer. In 4, symptoms of UMN occurred within 3 months of cancer diagnosis or tumor recurrence. They had no metastases or spinal cord compression. Serum anti-neuronal antibodies were negative. Three patients are alive (follow-up of 156, 15, and 12 months), and 2 remain without lower motor neuron signs. Group 3: Six patients developed MND resembling amyotrophic lateral sclerosis between 47 months before and 48 months after their cancer diagnosis. In group 1, the MND associated with the anti-Hu antibody is unequivocally paraneoplastic. In group 2, the proximate onset of MND with the diagnosis of cancer or its recurrence, its pure or long-lasting UMN signs, and its association with breast cancer, suggest that the disorder may be paraneoplastic. Although for most cancer patients who develop MND the occurrence of both disorders is probably coincidental, in some patients with MND a careful search for an underlying cancer is warranted (ie, patients in groups 1 and 2).

Background: Functional mobility (FM) is the person's ability to move to accomplish daily living tasks and activities. FM limitations are common in Parkinson's disease, increase with disease progression, and can be highly disabling. Although several studies in Parkinson's disease (PD) field use this concept, only recently, a formal definition has been proposed.Objective: We aimed to explore patient's and health professional's perspectives of FM in PD.Methods: A focus group methodology has been used. Four focus groups, with a total of 10 patients and 10 health professionals, were performed. Six patients were early stage and four advanced stage. The health professional's group was composed of five neurologists and five physiotherapists. The suitability of the new concept, the impact of FM limitations in PD patient's daily routine, and the potential benefit of walking aids have been discussed.Results: All participants were able to provide a spontaneous definition of FM, matching with the proposed concept. All agreed that PD affects patient's FM, increasing the limitations with disease progression, and with the existence of a serious prejudice with walking aids that hinders its use. Early-stage patient's perspective seems to be more in line with neurologist's perspective, while the views of advanced-stage patients were closer to physiotherapist's views.Conclusion: FM concept was considered as intuitive and useful. FM limitations have an important physical and social impact in the advanced stage of the disease. Although patients and health professionals acknowledge walking aid's benefit improving patient's FM, the prejudice associated with this type of tools limits its recommendation and use.

Background: The age standardised death rate from motor neuron disease (MND) has increased from 1.29 to 2.74 per 100,000, an increase of 112.4% between 1959 and 2013. It is clear that genetics could not have played a causal role in the increased rate of MND deaths over such a short time span. We postulate that environmental factors are responsible for this rate increase. We focus on lead additives in Australian petrol as a possible contributing environmental factor. Methods: The associations between historical petrol lead emissions and MND death trends in Australia between 1962 and 2013 were examined using linear regressions. Results: Regression results indicate best fit correlations between a 20 year lag of petrol lead emissions and age-standardised female death rate (R2 = 0.86, p = 4.88 × 10−23), male age standardised death rate (R2 = 0.86, p = 9.4 × 10−23) and percent all cause death attributed to MND (R2 = 0.98, p = 2.6 × 10−44). Conclusion: Legacy petrol lead emissions are associated with increased MND death trends in Australia. Further examination of the 20 year lag between exposure to petrol lead and the onset of MND is warranted.