Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis

Background

People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non-invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions.

Methods

The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement. The search of five bibliography databases and an extensive supplementary search strategy identified 27 papers that included qualitative accounts of pwMND, caregivers and healthcare professionals' (HCPs) experiences of making decisions about gastrostomy and ventilation. The findings from each study were included in a thematic synthesis.

Findings

Making decisions about interventions is an emotional rather than simply a functional issue for pwMND. The interventions can signal an end to normality, and increasing dependence, where pwMND consider the balance between quality of life and extending survival. Interactions with multiple HCPs and caregivers can influence the process of decision-making and the decisions made. These interactions contribute to the autonomy pwMND are able to exert during decision-making. HCPs can both promote and threaten pwMND perceived agency over decisions through how they approach discussions about these interventions. Though there is uncertainty over the timing of interventions, pwMND who agree to interventions report reaching a tipping point where they accept the need for change.

Conclusion

Discussion of gastrostomy and ventilation options generate an emotional response in pwMND. Decisions are the consequence of interactions with multiple external agents, including HCPs treading a complex ethical path when trying to improve health outcomes while respecting pwMND right to autonomy. Future decision support interventions that address the emotional response and seek to support autonomy have the potential to enable pwMND to make informed and timely decisions about gastrostomy placement and ventilation.

Patient or Public Contribution

The lead author collaborated with several patient and participant involvement (PPI) groups with regards to the conceptualisation and design of this project. Decisions that have been influenced by discussions with multiple PPI panels include widening the scope of decisions about ventilation in addition to gastrostomy placement and the perceptions of all stakeholders involved (i.e., pwMND, caregivers and HCPs).     

Weaknesses and challenges of primary healthcare system in Iran: a review

While the primary healthcare (PHC) services in Iran were appropriate to the needs of the population in the late 1970s and 1980s, the changing burden of disease and shifting demand patterns have rendered the existing PHC system no longer suitable for meeting current and emergent needs. This has serious implications for the PHC system in Iran, which has clearly succeeded in addressing high levels of communicable diseases, maternal deaths and infant mortality, but appears less well prepared to address the emerging challenges of noncommunicable diseases (NCD). We conducted a systematic review of the available literature in the past 10 years related to the PHC system in Iran to assess its weaknesses and challenges. This paper categorizes PHC system weaknesses from the studied articles into two groups: (i) those related to the key functions of PHC, and (ii) others, which refer to health system weaknesses existing with the current PHC model. Iran can draw on international experience and evidence regarding interventions, which can be used to develop an effective and responsive PHC system designed to address current and emerging needs, in particular the NCD burden.     

Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease

This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2–5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre‐scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.     

Upscaling the recruitment and retention of human resources for health at primary healthcare centres in Lebanon: a qualitative study

The sustainability of primary healthcare (PHC) worldwide has been challenged by a global shortage in human resources for health (HRH). This study is a unique attempt at systematically soliciting and synthesising the voice of PHC and community stakeholders on the HRH recruitment and retention strategies at the PHC sector in Lebanon, the obstacles and challenges hindering their optimisation and the recommendations to overcome such obstacles. A qualitative design was utilised, involving 22 semi‐structured interviews with PHC experts in Lebanon conducted in 2013. Nvivo qualitative data analysis software was employed for the thematic analysis of data collected from interviews. Five comprehensive themes emerged: understanding PHC scope, HRH recruitment issues, HRH retention challenges, rural areas' specific challenges and stakeholders' recommendations. Analysis of stakeholders' responses revealed a lack of a unified understanding of the PHC scope impacting the capacity for appropriate HRH planning. Identified impediments to recruitment included the suboptimal supply of HRH, financial constraints and poor management. Retention difficulties were attributed to poor working environments, financial constraints and lack of professional development. There was consensus that HRH challenges faced were aggravated in rural areas, jeopardising the equitable access to PHC services of quality. Equitable access was also jeopardised by the reported shortage of female HRH in a sociocultural context where many females prefer providers of the same gender. The study sets the path towards upscaling recruitment and retention policies and practices through the endorsement of a nationally acknowledged PHC definition and scope, the sustainable development of the PHC workforce and through the implementation of targeted recruitment and retention strategies addressing rural settings and gender equity. Decision‐makers and planners are urged to identify HRH as the most important input for the success of PHC programmes and interventions, especially in the growing fields of mental health and geriatric care.     

Identifying challenges and barriers in the delivery of primary healthcare at the district level: a study in one Thai province

In 2001, the universal health coverage policy was adopted by Thailand with primary healthcare (PHC) as the major focus of the policy. In order to understand the structural and institutional factors affecting the implementation of PHC in rural Thailand, a qualitative study, utilising individual interviews with national and provincial policy decision makers, community health directors, heads of hospital primary care units, chiefs of district health offices, heads of health centres and community representatives, from one rural province was undertaken. Findings showed that the sustainability of PHC service provision under the administration of community hospitals is problematic as barriers exist at the policy and operational levels and access to PHC for all citizens may not be achieved until these barriers are addressed. Furthermore, although PHC needs to be acknowledged and implemented by all stakeholders within the health industry and government, the roles and responsibilities of the stakeholders in health services management at the district level need to be clarified. Copyright © 2012 John Wiley & Sons, Ltd.     

Living with motor neurone disease: lives, experiences of services and suggestions for change

Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experiences of people living with MND? (2) What are people's experiences of services? and (3) Can improvements to care be identified? A qualitative research design was adopted using semi‐structured interviews. The topic guide was developed from existing literature. The study was based in three boroughs in London, UK. People living with MND and professionals were drawn from a database at King's College Hospital, and additionally, through ‘snowball’ sampling. Nine people with MND, five carers/family members and 15 professionals took part in the interviews. These interviews were audio‐taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. The analysis was facilitated with the NVIVO computer software package. The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals’ attitudes and approaches, and professionals’ knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.     

Handovers in primary healthcare in Norway: A qualitative study of general practitioners’ collaborative experiences

Worldwide demographic development increases the pressure on healthcare services. In Norway, municipal acute wards (MAWs) have been established as a 24‐hr acute healthcare service as a primary healthcare alternative to hospitalisation. General practitioners (GPs) are key holders of referrals to different healthcare service levels, yet studies of GPs’ experiences with these wards are sparse. Suboptimal handovers could lead to hospital readmissions, avoidable morbidity and even mortality. The aim of this study was to explore GPs’ experiences with patient handovers to MAWs as well as to hospitals. A qualitative study including semi‐structured interviews with 23 GPs in a county in south‐eastern Norway was conducted. Data were analysed using thematic analysis. The results show that GPs preferred to collaborate with others in their own profession for patient handovers. The GPs had positive collaborative experiences with MAW doctors, while collaboration with doctors in hospitals was viewed more negatively, particularly as GPs had the impression that hospital doctors felt they had superior medical competence. After patient transfer, GPs felt uncertainty related to their own responsibilities for the patient. This study contributes new knowledge about GPs’ experiences with collaboration and distribution of responsibility between primary and tertiary healthcare services. This information is essential when developing acceptable alternatives to general hospitals.     

Determinants of healthcare utilization in Greece: Implications for decision-making

Objective: To explore factors influencing the utilization of primary and secondary healthcare in Greece. Methods: A national, geographically stratified sample was randomly selected. From November 2001 to March 2002, 5000 questionnaires were mailed, 4427 were actually received, and 1819 were completed and returned (response rate 41%). The questionnaire investigated respondents’ characteristics and their health services utilization. A number of potential utilization determinants were explored, such as region, gender, age, education, income, insurance coverage, number of family members, self-rated health status, country of birth, and parents’ country of birth. Results: The utilization of primary healthcare services depended on self-rated health status, age, income, gender, and region. Individuals with moderate and poor self-rated health, older people, women, and residents of the region of Epirus showed increased utilization of primary healthcare services. Income was a factor affecting the utilization of primary healthcare only at lower income levels. The frequency of visits for primary healthcare was negatively correlated with self-rated health status and increased as self-evaluation of health status worsened. Hospitalization was associated with self-rated health and insurance coverage for primary healthcare. Individuals with better self-rated health status, as well as those who were covered by health insurance for primary care, showed decreased hospital care utilization. The frequency of hospitalization depended on region and lower evaluations of health status.

Conclusion: The findings of our research are encouraging, since they suggest that the utilization of health services in Greece is mostly determined by health status rather than other socioeconomic factors. It is believed that similar studies should be conducted in the country, since they can improve health service planning and reinforce decision-making towards healthcare resource allocation according to healthcare needs.     

Service use and needs of people with motor neurone disease and their carers in Scotland

A national study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.     

Touching moments: phenomenological sociology and the haptic dimension in the lived experience of motor neurone disease

Currently, there is a relative research lacuna in phenomenological research into the lived experience of motor neurone disease. Based on a sociological research project in the UK, involving 42 participants diagnosed with MND, this article explores the potential of a phenomenological sociology for analysing experiences of this drastically life‐limiting neurological disorder. Calls have been made for sociological researchers to analyse more fully and deeply the sensory dimension of the lived body, and this article also contributes to this newly developing body of literature. While the social sciences have been accused of a high degree of ocularcentrism, here we take forward the literature by specifically focusing upon the haptic dimension, given that touch – and particularly the loss of key elements of the haptic dimension– emerged as salient in MND patients' accounts. To illustrate the potential of our phenomenologically inspired theoretical perspective, we consider two specific haptic themes: (i) being out of touch: the loss of certain forms of touch within MND and (ii) unwelcome touch by medical staff.     

Investigating the job satisfaction of healthcare providers at primary healthcare centres in Lebanon: A national cross‐sectional study

Low job satisfaction is linked to higher staff turnover and intensified shortages in healthcare providers (HCP). This study investigates the level of, and factors associated with, HCP job satisfaction in the national primary healthcare (PHC) network in Lebanon. The study adopts a cross‐sectional design to survey HCP at 99 PHC centres distributed across the country between October 2013 and May 2014. The study questionnaire consisted of four sections: socio‐demographics/professional background, employment characteristics, level of job satisfaction (Measure of Job Satisfaction scale) and level of professional burnout (Maslach Burnout Inventory‐HSS scale). A total of 1,000 providers completed the questionnaire (75.8% response rate). Bivariate and multivariate regression analyses were used to identify factors significantly associated with job satisfaction. Findings of the study highlight an overall mean job satisfaction score of 3.59 (SD 0.54) indicating that HCP are partially satisfied. Upon further examination, HCP were least satisfied with pay, training and job prospects. Gender, age, career plans, salary, exposure to violence, and level of burnout were significantly associated with the overall level of job satisfaction which was also associated with increased likelihood to quit. Overall, the study highlights how compensation, development and protection of PHC HCP can influence their job satisfaction. Recommendations include the necessity of developing a nationally representative committee, led by the Ministry of Public Health, to examine the policies and remuneration scales within the PHC sector and suggest mechanisms to bridge the pay differential with other sectors. The effective engagement of key stakeholders with the development, organisation and evaluation of professional development programmes offered to HCP in the PHC sector remains crucial. Concerned stakeholders should assess and formulate initiatives and programmes that enrich the physical, psychological and professional well‐being of their HCP. The aforementioned suggestions are necessary to strengthen and sustain PHC HCP and support the provision of universal health coverage to the Lebanese population.     

The diagnostic,therapeutic and assistance pathway for amyotrophic lateral sclerosis in a north-eastern Italian region: satisfaction of patients and their caregivers

In order to evaluate the users’ satisfaction degree for the diagnostic, therapeutic and assistance services for amyotrophic lateral sclerosis (ALS) in the Italian region Friuli-Venezia Giulia (FVG), a self-compiled anonymous multiple-choice questionnaire was administered to ALS patients and their caregivers. The questionnaire explored 41 different issues covering the following areas: (a) access to diagnostic pathway and communication among patients, families and health professionals; (b) quality of disease monitoring and effectiveness of interventions aimed at mitigating ALS symptoms; (c) easiness of access to assistive devices (e.g. wheelchair, ankle-foot-orthosis) and home assistance; (d) patient’ choices sharing and health professionals empathy. The same issues were proposed both to patients and carers, appropriately adapting the questions, during the period between June and December 2019. The answers were categorised according to criticality level. Median with interquartile range of the numeric variables and percentages of the categorical variables and of the answers to questions were calculated. The mean percentage of satisfied users was 72.8%, considering all the areas. Pain treatment and easiness of access to ambulance transport were the most positive aspects (95.7% and 92.5% of satisfied respondents, respectively), while information about possible enrolment in clinical trials and about possible registration to the regional ALS association were the most critical issues (30.9% and 43.4% of satisfied users). Although the satisfaction level of ALS patients and their caregivers for the services provided resulted generally good, there were some areas that have to be improved. For this purpose, enhancement of multidisciplinary collaboration, sharing of points of view from users and different practitioners and rising awareness among healthcare professionals through clinical audits could be useful. Further research is needed to identify a wider range of users’ unexplored unmet needs.     

Primary healthcare personnel challenges and barriers on the management of patients with multimorbidity in Albania

The number of people living with chronic conditions is increasing worldwide with most of these people receiving the needed healthcare services in primary healthcare (PHC) settings. The objective of this study was to explore the main challenges and barriers that PHC providers confront while treating multimorbid patients. This is a qualitative study utilising semi-structured individual in-depth interviews. The study took place in Vlora City, which is the biggest city located in south Albania. Τhe two biggest PHC centres of the city were enrolled. Purposive sampling method was used to recruit PHC practitioners. Main criteria of participation in the study were being fully employed at the enrolled primary care centres, having worked for at least 1 year and to deal with multimorbid patients in daily practice. Data collection took place from September 2019 to January 2020. In total, 36 semi-structured interviews took place with 23 (63.9%) nurses and 12 (33.3%) physicians (general practitioners/family doctors). Communication problems and disputes, lack of materials/equipment and the inappropriate infrastructure, miscommunication and problems in doctor–nurse relationships, coordination problems, lack of protocols and problems in the referral system were reported as the main challenges and barriers that the PHC personnel confront. The findings of this study are critical in understanding challenges that PHC personnel face when dealing with multimorbid patients in PHC settings. The emerged knowledge contributes significantly in a better understanding of the actual situation and to inform health policy makers on how to deal with the existing problems.     

Mental health professionals’ views of the parents of patients with psychotic disorders: a participant observation study

As a consequence of the deinstitutionalisation of mental health services, family members have become an important part of the care system. However, little is known about mental health professionals’ perceptions of these family members. The aim of this study was to explore professionals’ views of one particular group, the parents of patients with psychotic disorders. Because sensitive issues such as professionals’ perceptions of parents can be difficult to capture via interviews or self‐report instruments, we conducted participant observation of 20 multi‐professional team meetings. The observations were carried out during 2011 at a psychiatric care unit specialised in working with patients with psychosis. Approximately 10 inpatients and outpatients were discussed in each team meeting. All conversations about the patients’ parents were documented with field notes that were later analysed using inductive thematic analysis. Through the analysis, a complex and multi‐faceted image emerged of parents as seen by mental health professionals. Some parents were described as a helpful resource, but others were thought to hinder treatment. Conflicts between staff members and parents were commonly due to their differing views on the treatment, particularly the medical treatment, of the patient. Other parents were described as causing the patient emotional pain and some parents were perceived as neglectful or abusive. These findings highlight the crucial role mental health professionals play in identifying families’ particular needs and capacities to provide interventions that effectively address each specific situation. Professionals should also recognise families with adverse experiences and help parents fulfil their potential to become resources for their children with psychosis.