Involvement In Health Care Decisions Research Articles

Culturally adaptive healthcare for people with a learning disability from an ethnic minority background: A qualitative synthesis

AbstractBackgroundPeople with a learning disability face health inequality. Those from ethnic minority backgrounds with a learning disability face ‘double discrimination’ as members of two marginalised groups.MethodsThis codesigned review consolidated the evidence on the healthcare experiences of individuals and their carers from ethnic minority backgrounds with a learning disability. Three electronic databases were searched for UK studies from January 1990 to June 2022. Qualitative data from 28 studies were analysed using thematic framework analysis.FindingsThere was an overarching theme of ‘culture, choice and conflicts of control’, which related to the variable preferences for involvement in healthcare decisions. Cultural and individual factors impacted upon experience, with themes relating to ‘misunderstanding and mistrust’, ‘discrimination and stigma’, ‘isolation’, ‘feelings of shame and blame’, ‘burdens of care’ and ‘carer wellbeing’. Factors associated with healthcare‐seeking and care provision are described in the themes ‘triangles of care’, ‘community networks’ and ‘adaptive communication’.ConclusionsPeople from ethnic minority backgrounds with learning disability experience complex barriers which influence their healthcare experiences. Recognising and understanding discrimination can be difficult for people with a learning disability. Carers face challenges which influence their own wellbeing. Services need to be responsive to individual cultural contexts, while addressing potential conflicts of control.

Empowering Pharmacovigilance: The Role of Web 3.0 Technologies in Enhancing Drug Safety and Patient Engagement

The rise of Web 3.0 technology suggests excellent progress in many fields, like healthcare. In this study, we explored the possible impact that Web 3.0 could have on reducing significant drug side effects among patients, which is an ongoing problem in pharmacotherapy. We looked at how often and in what ways adverse reactions to medication occur by analyzing a full dataset containing all drugs' alternatives as well as their corresponding effects, uses and classifications. Our method includes examining data and knowledge about decentralized data handling, safety, and approaches that focus on users in Web 3.0. The results indicate how much better drug safety monitoring can be achieved through decentralized applications, smart contracts, and blockchain technology. It also shows the potential to make patient therapy more personal and motivate patient education and involvement in healthcare decisions. This study emphasizes the ability of Web 3.0 to transform the monitoring of drug safety and effectiveness; it presents a strong case for its use within healthcare systems. The ideas for doctors, patients and healthcare policymakers highlight the crucial need to include Web 3.0 technology to improve patient results and reduce drug-linked morbidity along with death rates.

"It's Like A Partnership": Exploring the Primary Care Experiences and Patient-Defined Goals of People Who Use Drugs.

Primary care is an important yet underutilized resource in addressing the overdose crisis. Previous studies have identified important aspects of primary care for people who use drugs (PWUD) and have found patient involvement in healthcare decisions and goal-setting to be especially critical. However, there has been limited research describing the primary care goals of PWUD. In harm reduction settings, where it is imperative that PWUD set their own goals, this research gap becomes especially relevant. To explore how PWUD navigate primary care with a focus on understanding their primary care goals. A qualitative study using semi-structured interviews. PWUD currently engaged in primary care at the Respectful and Equitable Access to Comprehensive Healthcare (REACH) Program, a harm reduction-based primary care program in New York City. Between June 2022 and August 2022, we conducted 17 semi-structured interviews. Informed by phenomenology, transcripts were coded using both inductive and deductive codes and themes were developed using thematic analysis approaches. Phenomenological analysis identified four core components that, together, created an experience that participants described as "a partnership" between patient and provider: (1) patient-provider collaboration around patient-defined healthcare goals; (2) support provided by harm reduction-based approaches to primary care anchored in incrementalism and flexibility; (3) care teams' ability to address healthcare system fragmentation; and (4) the creation of social connections through primary care. This holistic partnership fostered positive primary care experiences and supported participants' self-defined care goals, thereby facilitating meaningful care outcomes. To best meet the primary care goals of PWUD, these findings underscore the importance of primary care providers and programs facilitating such partnerships through organizational-level support anchored in harm reduction. Future research should explore how these experiences in primary care affect patient health outcomes, ultimately shaping best practices in the provision of high-quality primary care for PWUD.

Nurses' perspectives on patient involvement in an emergency department – An interview study

BackgroundPatient involvement in healthcare decisions is key to patient-centred care, and it is an area subject to continuous political focus. However, patient-centred care and patient involvement are challenging to implement in an emergency department (ED) setting, as EDs tend to focus on structures, processes, and outcomes. This study explored nurses’ perspectives on patient involvement in an ED setting. MethodThis study applied an explorative design and conducted focus group interviews to generate data; abductive reasoning was chosen as the analytical method. Two focus groups were held in February 2021, each including six ED nurses. ResultsFour themes were generated: notions of patient involvement, significant factors, ED culture, and management. Nurses considered patient involvement an optional add-on and, to some extent, a matter of tokenism carried forward by managers who are afraid of complaints and bad media coverage. Patient involvement in the form of providing information to patients was considered important yet less critical than life-saving and technical tasks. ConclusionED nurses’ perspectives on patient involvement are particularly influenced by the technical and life-saving culture in an ED. Information provision is considered patient involvement and is decided and administered by nurses.

Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study.

Autistic individuals have higher rates of co-occurring medical conditions and service use. However, autistic individuals and their families also reported lower satisfaction with health care service delivery. Previous studies described health care experiences of autistic adults, but less is known about those of autistic adolescents and young adults. This study aimed to qualitatively describe the health care experiences of autistic youth. Four longitudinal/serial focus groups were conducted with 8 autistic adolescents and young adults. Participants were members of an autistic patient advisory board, which is part of a broader initiative at a large, urban, safety-net hospital to improve the health care experiences of autistic patients. Focus groups were conducted virtually and were audio-recorded. Audio recordings were transcribed and verified for accuracy. Transcripts were consensus-coded with an inductive approach using tenets of grounded theory. Findings included 4 recurring themes: accessibility and accommodations, barriers of health service use, patient involvement in health care decisions, and facilitators of patient-clinician relationship. Participants noted that visit preparation, sensory items, and repeated positive interactions with clinician were helpful to build a positive health care experience. Our findings support previous research that suggest the need to individualize care, ensure availability of accommodations, apply flexibility in practice whenever possible, and increase health care professional knowledge about this unique patient population.

Shared Decision-Making and Cardiovascular Health: A Scientific Statement From the American Heart Association.

Shared decision-making is increasingly embraced in health care and recommended in cardiovascular guidelines. Patient involvement in health care decisions, patient-clinician communication, and models of patient-centered care are critical to improve health outcomes and to promote equity, but formal models and evaluation in cardiovascular care are nascent. Shared decision-making promotes equity by involving clinicians and patients, sharing the best available evidence, and recognizing the needs, values, and experiences of individuals and their families when faced with the task of making decisions. Broad endorsement of shared decision-making as a critical component of high-quality, value-based care has raised our awareness, although uptake in clinical practice remains suboptimal for a range of patient, clinician, and system issues. Strategies effective in promoting shared decision-making include educating clinicians on communication techniques, engaging multidisciplinary medical teams, incorporating trained decision coaches, and using tools (ie, patient decision aids) at appropriate literacy and numeracy levels to support patients in their cardiovascular decisions. This scientific statement shines a light on the limited but growing body of evidence of the impact of shared decision-making on cardiovascular outcomes and the potential of shared decision-making as a driver of health equity so that everyone has just opportunities. Multilevel solutions must align to address challenges in policies and reimbursement, system-level leadership and infrastructure, clinician training, access to decision aids, and patient engagement to fully support patients and clinicians to engage in the shared decision-making process and to drive equity and improvement in cardiovascular outcomes.

Shared decision making among hypertensive clients in public hospitals of West Shoa, central Ethiopia, 2020: Institution based cross sectional study

BackgroundPatient involvement in health care empowers patients to choose treatment and improves the quality of care and treatment outcomes. Despite its purpose, shared decision-making in clinical encounters was not given attention. So, this study aims to assess the level of shared decision-making among hypertensive patients. ObjectiveTo study the level of shared decision-making among hypertensive patients. MethodThe institution-based cross-sectional study method was used to collect data in three randomly selected public hospitals in the West Shoa Zone. A simple random sampling method was used for the selection of study participants. A pretested and structured shared decision-making questionnaire was used to measure patient engagement in decision-making. A descriptive analysis was done to determine the individual patient's level of involvement in shared decision-making. A 95% confidence interval (95% CI) was used to determine the level of shared decision-making. ResultsA total of 406 patients with hypertension participated in the study, yielding a response rate of 96.2%. Totally, 45.3% [CI (43.28–46.75)] of the participants have actively participated in shared decision-making. On the other hand, 53.6% [CI (49.42–56.7)] of participants reported they have been understood by their caregivers, and 52.9% [CI (46.2–58.9)] of the participants reported their caregiver helped them understand all the treatment options. On the other hand, only 121 patients, i.e., 34.7% [CI [28.86–37.8]] of the participants, have jointly chosen one type of treatment with their care provider. ConclusionThe level of involvement in shared decision-making among hypertensive patients is low in the study area compared to the expected standard of shared decision-making. So enhanced patient involvement in health care decisions is important.

Chronic Illness Patients' Perceptions of Quality of Care During Hospitalization: A Qualitative Study.

The rising prevalence of patients living with chronic illnesses and frequent hospitalizations represent many challenges in delivering high-quality care. Assessing patients' perceptions and needs regarding the quality of health care services is a critical step in improving quality of care. This study sought to explore the perception of quality of care from the perspectives and experiences of chronically ill patients during hospitalization. This study was conducted using a qualitative descriptive design. Face-to-face semi-structured individual interviews were conducted with 15 chronically ill patients at their bedside during their current hospital admission. Analysis followed Braun and Clarke's thematic analysis approach. Overall patients were pleased with their hospitalization experience; however, they highlighted many aspects of care that can be addressed to improve the quality of care provided. Five themes were identified from the analysis as follows: defining quality of care; aspects related to the healthcare providers; unmet care needs; patient's involvement in healthcare decisions and care expectations and outcomes. A key finding of this study was the association between quality of care and healthcare providers' skills, clinical competence, and attitudes. Poor communication and discoordination of care were the most significant impediment expressed. Actively involving patients in care may be effective when combined with meeting expectations. The findings of this study helped to identify the strength points and areas of improvement that are the cornerstone for developing tailored and patient-centered strategies to improve the quality of care during hospitalizations among chronically ill Saudis.

Parental Perceptions and Barriers towards Childhood COVID-19 Vaccination in Saudi Arabia: A Cross-Sectional Analysis.

Introduction: The vaccination of children against Coronavirus disease (COVID-19) is a prime area of focus around the globe and is considered a pivotal challenge during the ongoing pandemic. This study aimed to assess parents′ intentions to vaccinate their children and the barriers related to pediatric COVID-19 vaccination. Methodology: An online web-based survey was conducted to recruit parents with at least one child under the age of 12 years from Saudi Arabia’s Al-Jouf region. The parental intentions to vaccinate children were assessed via six items, while barriers against vaccination were assessed through seven items in validated study instrument. A 5-point Likert scale was used to record the responses of parents regarding both their intentions and barriers. Results: In total, 444 parents (28.41 ± 7.4 years, 65% females) participated in this study. Almost 90% of parents were vaccinated against COVID-19 but only 42% of parents intended to vaccinate their children. The mean intention score was 2.9 ± 1.36. More than one-third of study participants had no plan to vaccinate their children against COVID-19. The majority of the respondents agreed to vaccinate their children if vaccination was made compulsory by the government (relative index: 0.76, 73%). Out of seven potential barriers analyzed, concerns over vaccine safety and side effects were ranked highest (RII: 0.754), reported by 290 (65%) participants. In multivariate logistic regression, significant predictors of parental intention to vaccinate children were the increased education level of the parents (secondary education: OR = 3.617, p = 0.010; tertiary education: OR = 2.775, p = 0.042), COVID-19 vaccination status (vaccinated: OR = 7.062, p = 0.003), mother’s involvement in decisions regarding the child’s healthcare (mother: OR 4.353, p < 0.001; both father and mother: OR 3.195, p < 0.001) and parents’ trust in the vaccine’s safety (OR = 2.483, p = 0.022). Conclusions: This study underscored the low intention among parents to vaccinate their children against COVID-19. Vaccination intention was found to be associated with education, parents’ vaccination status, the mother’s involvement in healthcare decisions, and parents’ trust in the vaccine’s safety. On the other hand, parents’ concerns over the safety and efficacy of the COVID-19 vaccine were widely reported as barriers to childhood vaccination. The health authorities should focus on addressing parental concerns about vaccines to improve their COVID-19 vaccination coverage.

Tanzanian men\u2019s engagement in household chores is associated with improved antenatal care seeking and maternal health

BackgroundMale support for partners’ antenatal care (ANC) has the potential to improve women’s care-seeking and maternal health outcomes. This study describes factors that are associated with men’s involvement in household tasks and explores the relationship between men’s help with tasks and women’s ANC-seeking, diet and workload during pregnancy as well as other health behaviors.MethodsThis study was conducted in five Lake Zone regions of Tanzania. Cross-sectional surveys were carried out among approximately 10,000 households that had children under the age of 2 years. Surveys were administered to mothers of children less than 2 years and where available, their male partners. Data were collected between December 2015 and May 2020, in conjunction with a large-scale campaign aimed at reducing childhood stunting by changing the behavior of mothers, caregivers, and decision makers. Data analysis included bivariate analysis and logistic regression modeling.ResultsMen’s engagement in household activities was significantly associated with living in an urban setting, being younger, having at least some formal schooling, early verbal interactions with their children, and male involvement in healthcare decisions. Additionally, mothers of male partners that were engaged in household activities were significantly older and more likely to have at least some secondary school education. Relative to households where men only infrequently helped out with chores or not at all, women from households where men frequently helped were significantly more likely to have taken iron tablets during pregnancy, report having eaten more than usual, lessening their household workload during their most recent pregnancy, and more likely to have played with their child in the week prior to the survey.ConclusionMale’s participation in household tasks is associated with a general improvement in mother’s ANC behaviors. Implicit in these findings is that general primary education for both men and women has health benefits that transcend socioeconomic class and that future interventions aimed to engage males in household tasks may target older males with less education living in rural areas.

Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

BackgroundENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model.MethodsQualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE.ResultsWhile physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building.ConclusionsENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.

How people living with motor neurone disease and their carers experience healthcare decision making: a qualitative exploration

Purpose Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision making may be affected by personal approach to receiving information, decision making style, and disease symptoms. This study explored decision making from the perspectives of people living with motor neurone disease (plwMND). The issues impacting engagement and involvement in healthcare decisions were investigated. Methods Semi-structured interviews were conducted with 19 plwMND and 15 carers. Interview data was inductively analysed to identify and describe patterns and themes. Results Data analysis identified six overarching themes: Dimensions of decision making; Window of opportunity for choice; Intrinsic influences on decision making; Extrinsic influences impacting decision making; Planning in uncertainty; and, Communication is core. Many participants did not identify a process of “decision-making” except if considering early gastrostomy placement. Information provision requires a balance between ensuring patients are informed but not overwhelmed. Communication impairment impacts involvement. Healthcare professionals’ communication style influences engagement in decision making. Conclusion PlwMND perceive a lack of clinical decisions to make because disease symptoms and clinical phenotypes dictate necessary interventions. PlwMND describe communication impairment as a barrier to involvement in decision making and extra support is required to ensure they maintain engagement. IMPLICATIONS FOR REHABILITATION People living with MND (plwMND) perceive they have few clinical decisions to make and viewed this process as “accepting a recommendation”, rather than “making a decision” although early gastrostomy placement is the exception with considerable deliberation evident. Specialist multidisciplinary clinic advice is especially helpful for plwMND without dysphagia (swallowing problems) when considering early gastrostomy placement. Communication impairment may be a barrier to involvement in healthcare decisions and extra support to remain engaged is required. Some plwMND choose not to involve others in their decisions, and patients/families with medical or scientific backgrounds are more likely to collaborate with each other outside the context of clinic appointments.

Perceived involvement in health care decisions among US adults: Sociodemographic and medical condition correlates

ObjectiveTo explore factors associated with how often US adults perceived that they were “always” involved in decisions about health care to the degree that they desired. MethodsWe examined cross-sectional, nationally representative data from the 2018 Health Information National Trends Survey. There were 3504 responses in the full HINTS dataset; 2499 remained after eliminating respondents with missing data for any factor of interest. Sociodemographic factors included age, gender, race/ethnicity, and education. Medical conditions included diabetes, hypertension, heart disease, lung disease, arthritis, cancer, and depression. Participants were asked to think about communication with health professionals during the last 12 months and how often health professionals involved them in decisions about health care. ResultsIn univariate analyses, Asian and Hispanic race were associated with lower odds of always being involved in decisions about health care; whereas higher education and a history of cancer were associated with higher odds of “always” being involved in decisions about health care, p < 0.05. In multivariate analyses, race and education both remained significant; however, history of cancer did not. ConclusionDifferences by race/ethnicity and educational attainment exist regarding perceived involvement in decisions about health care. Practice implicationsFindings may inform future shared decision making interventions.

Experiences of Cardiac Patients and Healthcare Providers Regarding Involvement in Health Care Decisions

Experiences of Cardiac Patients and Healthcare Providers Regarding Involvement in Health Care Decisions

Perceived problems with involvement in decision making about breast cancer treatment and care: A cross-sectional study

ObjectiveTo examine perceived problems with involvement in medical decision making among people with breast cancer from various phases of the cancer care trajectory. MethodsBreast cancer outpatients (n = 663) from 13 treatment centres completed a survey of perceived involvement in treatment and care decisions in the last month, psychological distress, demographic and clinical factors. A subsample (n = 98) from three centres completed a follow-up survey on preferred and perceived treatment decision making roles. ResultsOverall, 112 (17 %) of 663 respondents from 13 oncology centres had experienced problems with involvement in decision making about their treatment and care in the last month, and of these, 36 (32 %) reported an unmet need for help with this problem. Elevated psychological distress was associated with 5.7 times the odds of reporting this problem and 6.6 times the odds of reporting this unmet need in the last month. Among the follow-up subsample (n = 98), 39% (n = 38) reported discordance between preferred and perceived role in a major treatment decision. Psychological distress was not associated with this outcome. ConclusionPsychological distress was significantly associated with recently experiencing problems with involvement in treatment and care decisions, but not with misalignment of preferred and perceived roles in prior major treatment decisions. Practice implicationsThere is a need to maintain support for patient involvement in healthcare decisions across the cancer care continuum.

Patient Reports of Involvement in Health Care Decisions: Falling Short of Healthy People 2020 Objectives

The Healthy People 2020 (HP 2020) initiative delineates objectives for improving population health in the United States. The National Cancer Institute’s Health Information National Trends Survey (HINTS) has served as an important data source for tracking several HP 2020 Health Communication and Health Information Technology objectives, including patient perceptions of involvement in health-care decisions. We analyzed data from six cross-sectional administrations of HINTS (2008 to 2017; N = 25,410) to assess progress toward the HP 2020 objective of increasing the proportion of persons reporting that their health-care providers always involved them in decisions about their health care. In each survey year, just over half the population (range = 51.6 to 54.6) reported that their health-care providers always involved them in health-care decisions; the observed percentages over a 10-year period remained below the HP 2020 goal of 56.8% and did not show significant improvement. Results show a lack of progress toward this HP 2020 goal despite increased attention to patient engagement in health care over the last several decades.

Nuances of reproductive decisions by women in a rural community of Lagos, Nigeria.

Introductioninadequate utilization of maternal health services due to limited reproductive decision-making capacity could be contributory to high maternal mortality in developing countries. This study sought to assess nuances of reproductive decisions by women in a rural community of Lagos, Nigeria.Methodsthis descriptive, cross-sectional house to house survey was part of a study conducted in April 2015 on females selected from 298 households chosen based on geographical clusters by simple random sampling. The study instrument was adapted from a USAID-funded project and was interviewer-administered. Data entry and analysis were performed with the aid of Epi-info™ 7.0.8.3 statistical software and ethical approval was obtained for the study.Resultsspousal age difference was less than 10 years for about half (51.3%) of the respondents. The majority (91.6%) of the respondents had received antenatal care during pregnancy and jointly decided with their spouses on place of care. The most commonly used contraceptives were the pills (23.5%), injectables (16.8%) and condoms (13.8%). Spousal disapproval regarding the use of family planning was almost nil at 1%. Employment status as a socio-economic factor did not significantly affect respondents´ involvement in decision-making. However, there were statistically significant associations between spousal age differences and some indicators of autonomy such as respondents´ involvement in health care decisions and the determinant on choice of antenatal care provider.Conclusionwomen´s reproductive independence and involvement in health decisions could result in reduction of maternal ill-health and mortality whilst promoting higher male involvement and better maternal health.

Are Patient Decision Aids Used in Clinical Practice after Rigorous Evaluation? A Survey of Trial Authors.

Background. Patient decision aids (PtDAs) are effective interventions to support patient involvement in health care decisions, but there is little use in practice. Our study aimed to determine subsequent PtDA use in clinical practice following published randomized controlled trials. Design. A descriptive study using an e-mail-embedded questionnaire survey targeting authors of 133 trials included in Cochrane Reviews of PtDAs (106 authors). We classified PtDA level of use as a) implementation, defined as integrating within care processes; b) dissemination to target users with planned strategies; and c) diffusion, defined as passive, unplanned spread. We conducted content analysis to identify barriers and enablers guided by the Ottawa Model of Research Use. Results. Ninety-eight authors responded (92.5%) on 108 trialed PtDAs. Reported levels of use were implementation (n = 29; 28%), dissemination to target user(s) (n = 9; 9%), and diffusion (n = 7; 7%); 57 (55%) reported no uptake, and 1 had no response (1%). Barriers to use in clinical practice were identified at the level of researchers (e.g., lack of posttrial plan), PtDAs (e.g., outdated, delivery mechanism), clinicians (e.g., disagreed with PtDA use), and practice environment (e.g., infrastructure support; funding). Enablers were online delivery, organizational endorsement (e.g., professional organization, charity, government), and design for and integration into the care process. Limitations. Self-report bias and potential for recall bias. Conclusions. Only 44% of PtDA trial authors indicated some level of subsequent use following their trial. The most commonly reported barriers were lack of funding, outdated PtDAs, and clinician disagreement with PtDA use. To improve subsequent use, researchers should codesign PtDAs with end users to ensure fit with clinical practice and develop an implementation plan. National systems (e.g., platforms, endorsement, funding) can enable use.

Patient involvement in health care decision making; an experience

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 5.120 (2020 JCR, received in June 2021)

Communication and cognitive impairments and health care decision making in MND: A narrative review.

Motor neurone disease (MND) is a neurodegenerative disease presenting with progressive weakness of voluntary muscles. For any condition, person-centred health care relies on the sharing of information and a mutual understanding of the person's needs and preferences. Decision making in MND becomes more complex as there is no cure and a high prevalence of co-morbid communication and/or cognitive difficulties. To identify the reported impact of communication and/or cognitive impairment on patient and carer involvement in health care decision making in MND. A review and synthesis of studies addressing issues of communication impairment and/or cognitive impairment in relation to decision making focussed on MND was conducted. Articles were excluded if they were reviews, case studies, conference papers, or commentaries. To be included studies needed to address issues of communication impairment or cognitive impairment specifically in relation to decision making. Relevant data were extracted verbatim and subjected to content analysis to support the narrative summary. Seventy-six articles were identified, and 35 articles screened. Six articles met inclusion criteria each describing examples of decision making in MND. There was limited data related to communication and/or cognitive impairment, and the impact these impairments may have on decision making despite recognition that many people with MND may lose verbal communication or develop subtle cognitive impairments. The literature is primarily from the perspective of others. This review highlights that the current body of literature exploring decision making within the MND population presents us with extremely limited insights into the impact of communication and/or cognitive impairments on health care decision making. Extant literature focuses on interventions (namely, ventilation and gastrostomy), the broad process of decision making, or cognitive assessment of decision-making ability. Whilst most studies acknowledge that deficits in communication or cognition impact the decision-making process, this issue is not the focus of any study.