Family Science: Generating Early Learning in Science

This paper explores a semi-formal Intervention which involves school children and their family adults in project work in astronomy. Mixed generation 'family teams' attended two 'family science evenings' at the children's primary schools and undertook to tackle and report on home-based projects over the intervening six week period. The projects required the family teams to collaborate in their learning and the results, in terms of enhanced interest and enjoyment of astronomy, were very positive. The evaluation of the research data considers outcomes at two levels: (i) general evaluative comments, and (ii) gains for the family teams involved. The research raises a number of issues, and highlights that, particularly In such a mixed context as this, precise learning gains are difficult to assess.     

Contextual dynamics in clinical workplaces: learning from doctor–doctor consultations

Medical Education 2013: 47 : 463–475 CONTEXT Some studies have explored the role of learning context in clerkships and in clinical teams. Very little is known, however, about the relationship between context and competence development in more loosely framed, day‐to‐day practices such as doctor–doctor consultations, although such interactions are frequent and typical in clinical work. METHODS To address this gap in the literature, a study was conducted using semi‐structured interviews in four different hospitals and participant observation at one site. Inductive content analysis was used to develop a framework. Special reference was made to the principles of situated cognition. RESULTS The framework illustrates how different situational, personal and organisational factors interact in every learning situation. The interplay manifests in three different roles that doctors assume in highly dynamic ways: doctors learn as ‘actors’ (being responsible), as ‘participants’ (being involved) and as ‘students’ (being taught); contextual influences also impact on the quality of learning within these roles. CONCLUSIONS The findings add to the current literature on clinical workplace learning and to the conceptualisation of context in the field of education. The practical contribution of the research lies in disentangling the complex dynamics of learning in clinical environments and in helping doctors and medical educators to increase their responsiveness to contextual factors.     

Principles of patient and public involvement in primary care research,applied to mental health research. A keynote paper from the EGPRN Autumn Conference 2017 in Dublin

Clinical research relies on patients being willing to participate in research projects, and making this possible for patients with mental health problems can be a particular challenge. In the modern era, many countries have seen a movement to give a stronger voice to patients both in choices around their care and in how research is conducted. How to achieve effective patient and public involvement (PPI) and to make the patients real partners in this effort is itself a subject of research evaluation. This opinion piece—based on a keynote lecture given at the European General Practice Research Network 2017 autumn meeting in Dublin—describes both the reasons for expanding PPI, how it can usefully be achieved, and how this may relate to the particular context of mental health. There can be moral, methodological or policy reasons for PPI. The three commonest models of good practice in PPI are the ‘one off,’ the ‘fully embedded’ and the ‘outreach’ models. In research into common mental health problems in family practice, ‘outreach’ approaches that minimize commitment over time may work best. ‘Expert patients’ from mental health charities can sometimes play this role. PPI may be challenging and involve extra effort, but the gains for all may be considerable. Wonca Europe networks including EGPRN can extend this message and findings.     

Globalisation and neoliberalism as structural drivers of health inequities

If there is one universal recommendation to countries wanting to make progress towards Universal Health Coverage (UHC), it is to develop the learning capacities that will enable them to ‘find their own way’ – this is especially true for countries struggling with fragmented health financing systems. This paper explores results from a multi-country study whose main aim was to assess the extent to which UHC systems and processes at country level operate as ‘learning systems’. This study is part of a multi-year action-research project implemented by two communities of practice active in Africa. For this specific investigation, we adapted the concept of the learning organisation to so-called ‘UHC systems’. Our framework organises the assessment around 92 questions divided into blocks, sub-blocks and levels of learning, with a seven scale score in a standardised questionnaire developed during a protocol and methodology workshop attended by all the research teams. The study was implemented in six francophone African countries by national research teams involving researchers and cadres of the ministries involved in the UHC policy. Across the six countries, the questionnaire was administrated to 239 UHC actors. Data were analysed per country, per blocks and sub-blocks, by levels of learning and per question. The study confirms the feasibility and relevance of adapting the learning organisation framework to UHC systems. All countries scored between 4 and 5 for all the sub-blocks of the learning system. The study and the validation workshops organised in the six countries indicate that the tool is particularly powerful to assess weaknesses within a specific country. However, some remarkable patterns also emerge from the cross-country analysis. Our respondents recognise the leadership developed at governmental level for UHC, but they also report some major weaknesses in the UHC system, especially the absence of a learning agenda and the limited use of data. Countries will not progress towards UHC without strong learning systems. Our tool has allowed us to document the situation in six countries, create some awareness at country level and initiate a participatory action-oriented process.     

Goal‐setting in paediatric rehabilitation: perceptions of parents and professional

Background In paediatric rehabilitation, there is a belief in goal‐setting as a fundamental component of decision‐making that encourages collaboration and motivation, and improves outcomes. This study aimed to explore parents' and professionals' perceptions of setting and implementing goals within a family centred rehabilitation programme for preschoolers with cerebral palsy (CP). Methods Parents and service providers of 13 preschoolers with CP, classified in Gross Motor Function Classification System level I‐III, participated in two‐step focus group interviews. Results Three major themes emerged, each with two subthemes: (1) ‘Goals enhance competence’ with the subthemes ‘parents as drivers’, and ‘awareness through observation’; (2) ‘Goals direct attention’ with the subthemes ‘goals as valuable means’ and ‘collaboration through participation’, and (3) ‘Goals enter everyday life’ with the subthemes ‘goals as activities’ and ‘training vs. everyday practise’. A fourth theme ‘child perspective’ with the subthemes ‘follow‐up initiative’, ‘capture mastery’, and ‘create learning opportunities’ was both an exclusive theme and integrated in the other three main themes. Conclusions Active involvement of parents throughout the process of setting and implementing goals seemed to increase their feeling of competency and partnership with professionals. Concrete goals based on families' preferences and concerns, participatory observation, and discussions with professionals, came out as valuable means for practice of functional tasks within home environments.     

Continuity,commitment and context: adult siblings of people with autism plus learning disability

Sibling relationships are usually lifelong and reciprocal. They can assume particular significance when a brother or sister has a learning disability. Until recently, adult siblings of people with disabilities such as severe autism have been ignored by policy, practice and research. This qualitative study contributes to an emerging literature by exploring how adult siblings, who have a brother or sister with autism (plus learning disability) and living in England, give meaning to their family (and caring) relationships and engage with service delivery. We spoke to 21 adult siblings using semi‐structured interviews and met with 12 of their siblings with autism. Our analysis, using a broad narrative approach, demonstrates the continuity of the sibling relationship and an enduring personalised commitment. The nature of this relationship, however, is sensitive to context. How non‐disabled adult siblings relate to their childhood experience is fundamental when making sense of this, as is their need to fulfil other social and family obligations, alongside their ‘sense of duty’ to support their disabled brother or sister. Sibling experience was further mediated by negotiating their ‘perceived invisibility’ in social care policy and practice. Our work concludes that by understanding the way relationships between siblings have developed over time, adult siblings’ contribution to the lives of their brother or sister with autism can be better supported for the benefit of both parties. Such an approach would support current policy developments.     

Assessing the needs of caregivers of children with disabilities in Penang,Malaysia

Disability in a child not only affects the child but also presents socioeconomic and psychological impacts to the child's family. This study aims to describe the service needs of caregivers of children with disabilities in the state of Penang, Malaysia, and to determine the child and family characteristics predisposing to having more caregiver needs. A cross‐sectional survey was conducted between February and June 2013 among caregivers of children aged 0–12 years with disabilities registered with the Penang Department of Social Welfare. Caregivers completed a self‐administered mailed questionnaire containing a 20‐item Caregiver Needs Scale (CNS). Each item in the CNS was rated on a 5‐point Likert scale ranging from ‘help not at all needed’ to ‘help extremely needed’. A total of 273 surveys were available for analysis (response rate 34.0%). The CNS contained four domains. The ‘Help getting Information and Services for child’ domain had the highest mean score (3.61, 95% CI: 3.46, 3.77) followed by ‘Help with Finances’ (3.29, 95% CI: 3.13, 3.45) and ‘Help Coping with child’ (3.11, 95% CI: 2.97, 3.25), while the ‘Help getting Childcare’ domain had the lowest mean score (2.30, 95% CI: 2.13, 2.47). Multivariate regression analysis identified caregivers of younger children and with more severe disability as having more caregiver needs in all domains. Besides that, caregivers of children with learning disability needed more help getting information and help with coping. Caregivers of children with learning and multiple disabilities needed more help getting childcare compared to children with other disability. Caregivers of Indian ethnicity, who had less than a tertiary education and who themselves had medical problems needed more help with finances. The findings on caregiver needs in this study can help inform planning of family support services for children with disabilities in Penang, Malaysia.     

The minimal relationship between simulation fidelity and transfer of learning

Medical Education 2012 Context High‐fidelity simulators have enjoyed increasing popularity despite costs that may approach six figures. This is justified on the basis that simulators have been shown to result in large learning gains that may transfer to actual patient care situations. However, most commonly, learning from a simulator is compared with learning in a ‘no‐intervention’ control group. This fails to clarify the relationship between simulator fidelity and learning, and whether comparable gains might be achieved at substantially lower cost. Objectives This analysis was conducted to review studies that compare learning from high‐fidelity simulation (HFS) with learning from low‐fidelity simulation (LFS) based on measures of clinical performance. Methods Using a variety of search strategies, a total of 24 studies contrasting HFS and LFS and including some measure of performance were located. These studies referred to learning in three areas: auscultation skills; surgical techniques, and complex management skills such as cardiac resuscitation. Results Both HFS and LFS learning resulted in consistent improvements in performance in comparisons with no‐intervention control groups. However, nearly all the studies showed no significant advantage of HFS over LFS, with average differences ranging from 1% to 2%. Discussion The factors influencing learning, and the reasons for this surprising finding, are discussed.     

Implementing alcohol and other drug interventions effectively: How does location matter?

Objective: To identify enabler and barrier mechanisms that impact project implementation, from a review of 127 completed projects intended to reduce harms associated with problematic alcohol and licit drug use in Australia. Design: Data comprised archival material (proposals, reports). A coding framework was developed from the literature and a sample of projects; two researchers developed and refined the framework. Open coding was used to identify factors impacting implementation, followed by pattern coding to identify underlying mechanisms. Sample: Project categories were developed from funding orientation and main activities projects were: enhancing organizational systems and processes (39), training and workforce development (18), community education and prevention (37) and client engagement and treatment (33). Thirty‐five projects (28%) were in non‐capital city locations. Results: Nine enabler and ten barrier mechanisms were identified, for example, ‘project planning and design’ and ‘wider service system challenges’. Three enabler mechanisms were more likely to be identified for non‐capital city projects; ‘external communication and relationships’ (83% vs 70%), ‘sensitivity to service users and settings’ (49% vs 40%) and ‘funding and resourcing’ (40% vs 35%). Most barrier mechanisms were identified for a higher proportion of non‐capital city projects, particularly ‘identifying and retaining personnel’ (54% vs 34%), ‘engaging communities and partners’ (46% vs 26%) and ‘organizational governance and capacity’ (29% vs 5%). Conclusions: Project implementation in non‐capital city locations requires particular attention to project planning and design, staffing and organizational well‐being. Policy initiatives and planning proposals might consider enabler mechanisms along with strategies to minimize barrier mechanisms to support successful implementation.     

Why are newly qualified doctors unprepared to care for patients at the end of life?

Medical Education 2011: 45 : 389–399 Context Death and dying occur in almost all areas of medicine; it is essential to equip doctors with the knowledge, skills and attitudes they need to care for patients at the end of life. Little is known about what doctors learn about end‐of‐life care while at medical school and how they learn to care for dying patients in their first year as doctors. Methods We carried out a qualitative study using face‐to‐face interviews with a purposive sample of 21 newly qualified doctors who trained in different medical schools. Results Data were analysed using a constant comparative approach. Two main groups of themes emerged. The first pertained to medical school experiences of end‐of‐life care, including: lack of exposure; a culture of ‘clerking and signs’; being kept and keeping away from dying patients; lack of examinations; variable experiences, and theoretical awareness. The second group of themes pertained to the experiences of recently qualified doctors and included: realising that patients really do die; learning by doing; the role of seniors; death and dying within the hospital culture; the role of nursing staff, and the role of the palliative care team. Conclusions Undergraduate medical education is currently failing to prepare junior doctors for their role in caring for dying patients by omitting to provide meaningful contact with these patients during medical school. This lack of exposure prevents trainee doctors from realising their own learning needs, which only become evident when they step onto the wards as doctors and are expected to care for these patients. Newly qualified doctors perceive that they receive little formal teaching about palliative or end‐of‐life care in their new role and the culture within the hospital setting does not encourage learning about this subject. They also report that they learn from ‘trial and error’ while ‘doing the job’, but that their skills and knowledge are limited and they therefore seek advice from those outside their usual medical team, mainly from nursing staff and members of palliative care teams.     

‘The unknown becomes the known’: collective learning and change in primary care teams

Context The growing emphasis on teamwork within the National Health Service (NHS) has made it a priority to understand how health care teams learn together and cope with change. Objectives This study aimed to explore how collective learning and change happen in primary care teams and how the process varies across the disciplines of general medical practice, pharmacy and dentistry. Methods This study reports on qualitative data gathered from 10 primary care teams over 1 year, by means of observational visits and 38 semi‐structured interviews. Results Informal collective learning is a powerful team coping mechanism that develops through experiential, evolving and implicit learning processes. These processes are predominantly relational in that they rely on the extent to which team members know and understand one another as people. This makes shared learning an effective but ‘messy’ dynamic, the motivation for which is internally generated by the team itself. Teams report that if they cannot learn together, they cannot meet patient needs. Conclusions These findings demonstrate that teams share their knowledge because they believe it has value, not because they are driven by external incentives or are monitored. This challenges the prevailing assumption that, to be effective, interprofessional learning should be externally managed. As health care develops, it will become increasingly important to consider how to support the internal learning processes of care teams as they navigate complex organisational changes and the shared learning experiences that characterise those changes. Those who support learning and development within the NHS should therefore focus on how relational processes, as well as educational content, contribute to a team’s collective learning capability and the quality of care its members provide.     

Role of research in occupational therapy clinical practice: Applying action learning and action research in pursuit of evidence‐based practice

Background: In South Africa, as in many other countries, the development of research capacity in students and their early professional career is regarded as of major importance. Within the context of clinical education for occupational therapy students at the University of the Free State, a lecturer and her students embarked on a collaborative journey while fulfilling the requirements of their undergraduate curriculum. The outcome is a model promoting evidence‐based practice (EBP) during service development on a dementia care ward. Methods: The practical use of action learning, action research (ALAR) approach in the clinical context, was used to encourage student engagement in successive small‐scale research projects while simulating EBP. The projects ranged from the development of therapeutic multi‐sensory environments to compiling activity profiles for identified residents. At the same time, students had the opportunity to experience the value of a scientific approach to practice development, which stimulated their awareness of the importance of research. Results: Reflection by the researcher contributed towards more effective ways for compiling project assignments and a formalised approach for assessing projects. Students described personal and professional gains because of participation in projects against the life‐changing experience of rendering a service to elderly persons suffering from dementia. The formalised approach guiding thoughts and actions finally assisted in developing a practical process model that could support EBP. Conclusions: The ALAR model contributed towards a scholarship of practice where the students, clinical educator and residents of a dementia unit all experienced the value of research.     

Preparedness is not enough: understanding transitions as critically intensive learning periods

Medical Education 2011: 45 : 1006–1015 Objectives Doctors make many transitions whilst they are training and throughout their ensuing careers. Despite studies showing that transitions in other high‐risk professions such as aviation have been linked to increased risk in the form of adverse outcomes, the effects of changes on doctors’ performance and consequent implications for patient safety have been under‐researched. The purpose of this project was to investigate the effects of transitions upon medical performance. Methods The project sought to focus on the inter‐relationships between doctors and the complex work settings into which they transition. To this end, a ‘collective’ case study of doctors was designed. Key transitions for foundation year and specialist trainee doctors were studied. Four levels of the case were examined, pertaining to: the regulatory and policy context; employer requirements; the clinical teams in which doctors worked, and the doctors themselves. Data collection methods included interviews, observations and desk‐based research. Results A number of problems with doctors’ transitions that can all adversely affect performance were identified. (i) Transitions are regulated but not systematically monitored. (ii) Actual practice (as observed and reported) was determined much more by situational and contextual factors than by the formal (regulatory and management) frameworks. (iii) Trainees’ and health professionals’ accounts of their actual experiences of work showed how performance is dependent on the local learning environment. (iv) The increased regulation of clinical activity through protocols and care pathways helps to improve trainees’ performance, whereas the less regulated aspects of work, such as rotas, induction and the making of multiple transitions within rotations, can impede performance during a period of transition. Conclusions Transitions may be reframed as critically intensive learning periods (CILPs) in which doctors engage with the particularities of the setting and establish working relationships with other doctors and other professionals. Institutions and wards have their own learning cultures which may or may not recognise that transitions are CILPS. The extent to which these cultures take account of transitions as CILPs will contribute to the performance of new doctors. Thus, these findings have implications for practice and for policy, regulation and research.     

Exploring the mealtime experience in residential care settings for older people: an observational study

Improving the mealtime experience in residential care can be a major facilitator in improving care, well‐being and QoL. Evidence suggests that, despite guidance on the subject of food, nutrition and hydration, there are still concerns. Although there is a range of methods to research and assess the quality of food provision, there is a challenge in capturing the experiences of those residents who are unable or unwilling to describe their feelings and experiences because of frailty, impaired communication or other vulnerability. The aim of this exploratory study was to capture and describe individual residents’ mealtime experience. In spring 2011, a small‐scale, observational study was carried out in seven dining settings in four residential care homes in Manchester. An adapted dementia care mapping tool was used alongside field notes. Observations showed two major differences in the way the mealtimes were organised: ‘pre‐plated’ and ‘family‐style’ (where either bowls of food are placed in the centre of the table or food is served directly from a hotplate by a chef). These two styles of service are discussed in relation to the emerging themes of ‘task versus resident‐centred mealtimes’, ‘fostering resident independence’ and ‘levels of interaction’. Although improving mealtimes alone is not enough to improve quality of life in care homes, findings showed that relatively small changes to mealtime delivery can potentially have an impact on resident well‐being in these homes. Observation is a useful method of engaging residents in care settings for older people who may not otherwise be able to take part in research.     

Rural residents' perspectives on the rural ‘good death’: a scoping review

The ‘good death’ is one objective of palliative care, with many ‘good death’ viewpoints and research findings reflecting the urban voice. Rural areas are distinct and need special consideration. This scoping review identified and charted current research knowledge on the ‘good’ rural death through the perspectives of rural residents, including rural patients with a life‐limiting illness, to identify evidence and gaps in the literature for future studies. A comprehensive literature search of English language articles (no date filter applied) was conducted in 2016 (2 January to 14 February) using five library databases. Reference lists of included articles, recent issues of eight relevant journals and three grey literature databases were also hand‐searched. Twenty articles (for 17 studies and one systematic review) were identified after a two‐phase screening process by two reviewers, using pre‐determined inclusion criteria. Data from each study were extracted and charted, analysed using a thematic analysis of the included articles' content, and with a quantitative analysis of the scoping review. These papers revealed data collected from rural patients with a life‐limiting illness and family caregivers, rural healthcare providers, the wider rural community, rural community leaders and rural health administrators and policy makers. Rural locations were heterogeneous. Residents from developed and developing countries believe a ‘good death’ is one that is peaceful, free of pain and without suffering; however, this is subjective and priorities are based on personal, cultural, social and religious perspectives. Currently, there is insufficient data to generalise rural residents' perspectives and what it means for them to die well. Given the extreme importance of a ‘good death’, there is a need for further studies to elicit rural patient and family caregiver perspectives.     

Learning not to take it seriously: junior doctors' accounts of error

Objectives We aimed to investigate experiences of, and responses to, medical error amongst junior doctors and to examine the challenges junior doctors face and the support they receive. Methods We carried out a qualitative study of 38 randomly selected pre‐registration house officers (PRHOs) in 10 hospitals. All 38 had graduated in 2000 or 2001 from a single medical school. Results Errors were common and sometimes serious. In relation to disclosure and learning from error, four main themes emerged: a norm of selective disclosure; the effects of the team; individualised blame and responsibility, and the ‘learning moment’. Trainees reported disclosing errors informally, particularly when teams were seen as supportive, but were reluctant to criticise colleagues. Formal reports and disclosure to patients were very rare. Patient care was compromised when juniors did not access senior help, often when working outside their usual team environment. Lack of cooperation between teams and poor continuity of care also contributed to errors. Learning was maximised when errors were formally discussed and constructive feedback offered. However, both blame and the prioritisation of reassurance over learning and structured feedback appeared to inhibit reflection on the experience of error. Conclusions Junior doctors need help to reflect on their experiences and to recognise where they may have made mistakes, particularly in the contexts of shift‐work and fragmented teams. Formal reporting systems alone will not facilitate learning from error. Juniors require individual clinical supervision from seniors with appropriate training. Such expertise may benefit the whole team and the training environment.     

Medical students’ first clinical experiences of death

Medical Education 2010: 44 : 421–428 Objectives Many medical students feel inadequately prepared to address end‐of‐life issues, including patient death. This study aimed to examine medical students’ first experiences of the deaths of patients in their care. Methods Final‐year medical students at the Schulich School of Medicine & Dentistry, University of Western Ontario were invited to share their first experience of the death of a patient in their care. The students could choose to participate through telephone interviews, focus groups or e‐mail. All responses were audiotaped, transcribed verbatim and analysed using a grounded theory approach. Results Twenty‐nine students reported experiencing the death of a patient in their care. Of these, 20 chose to participate in an interview, five in a focus group and four through e‐mail. The issues that emerged were organised under the overlying themes of ‘young’, ‘old’ or ‘unexpected’ deaths and covered seven major themes: (i) preparation; (ii) the death event; (iii) feelings; (iv) the role of the clinical clerk; (v) differential factors between deaths; (vi) closure, and (vii) relationships. These themes generated a five‐stage cyclical model of students’ experiences of death, consisting of: (i) preparation; (ii) the event itself; (iii) the crisis; (iv) the resolution, and (v) the lessons learned. ‘Preparation’ touches on personal experience and pre‐clinical instruction. ‘The event itself’ could be categorised as referring to a ‘young’ patient, an ‘old’ patient or a patient in whom death was ‘unexpected’. In the ‘resolution’ phase, coping mechanisms included rationalisation, contemplation and learning. The ‘lessons learned’ shape medical students’ experiences of future patient deaths and their professional identity. Conclusions A tension between emotional concern and professional detachment was pervasive among medical students undergoing their first experience of the death of a patient in their care. How this tension was negotiated depended on the patient’s clinical circumstances, supervisor role‐modelling and, most importantly, the support of supervisors and peers, including debriefing opportunities. Faculty members and residents should be made aware of the complexities of a medical student’s first experience of patient death and be educated regarding sympathetic debriefing.     

Exploring ways to overcome barriers to mammography uptake and retention among South Asian immigrant women

South Asians comprise one of the fastest growing immigrant groups in North America. Evidence indicates that South Asian (SA) immigrant women are vulnerable to low rates of breast cancer screening. Yet, there is a dearth of knowledge pertaining to socioculturally tailored strategies to guide the uptake of screening mammography in the SA community. In 2010, the authors conducted semi‐structured focus groups (FG) to elicit perspectives of health and social service professionals on possible solutions to barriers identified by SA immigrant women in a recent study conducted in the Greater Toronto Area. Thirty‐five health and social services staff members participated in five FG. The discussions were audio taped and detailed field notes were taken. All collected data were transcribed verbatim and thematic analysis was conducted using techniques of constant comparison within and across the group discussions. Three dominant themes were identified: (i) ‘Target and Tailor’ focused on awareness raising through multiple direct and indirect modes or approaches with underlying shared processes of involving men and the whole family, use of first language and learning from peers; (ii) ‘Enhancing Access to Services’ included a focus on ‘adding ancillary services’ and ‘reinforcement of existing services’ including expansion to a one‐stop model; and (iii) ‘Meta‐Characteristics’ centred on providing ‘multi‐pronged’ approaches to reach the community, and ‘sustainability’ of initiatives by addressing structural barriers of adequate funding, healthcare provider mix, inter‐sectoral collaboration and community voice. The findings simultaneously shed light on the grassroot practical strategies and the system level changes to develop efficient programmes for the uptake of mammography among SA immigrant women. The parallel focus on the ‘Target and Tailor’ and ‘Enhancing Access to Services’ calls for co‐ordination at the policy level so that multiple sectors work jointly to streamline resources, or meta‐characteristics.     

Do models of care designed for terminally ill ‘home alone’ people improve their end‐of‐life experience? A patient perspective

Palliative care patients who live alone report greater psychological distress, and are less likely to die at home than those living with a family carer. However, there is a lack of research on the value of models of care that specifically address this disadvantage. This article describes the experiences of terminally ill ‘home alone’ people using one of two models of care aimed at maintaining participants’ need for independent living, focusing on the effect of these two models of care on their physical, social and emotional needs. Twenty six palliative care patients of Silver Chain Hospice Care, in Western Australia, were randomly assigned to either having a personal alarm or additional care‐aide hours in their home. An in‐depth qualitative study was conducted in two phases in 2010 using face‐to‐face interviews. The care‐aide model of care resulted in benefits such as easing the burden of everyday living; supporting well‐being; enhancing quality of life and preserving a sense of dignity; and reducing loneliness and isolation. The personal alarm model of care imparted a sense of security; provided peace of mind; and helped to deal with feelings of isolation. Participants in both groups felt that they could remain at home longer. By providing a safer, more secure environment through the use of a personal alarm or additional care‐aide hours, patients were able to continue their activities of daily living, could build a sense of ‘normality’ into their lives, and they could live independently through support and dignity.