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‘Living well’ is an important concept across national dementia strategies. Qualitative research has contributed to understanding of living well for people with dementia. Longitudinal qualitative approaches, though fewer, can explore potential changes in accounts of living well, psychological coping and adapting to dementia, and if/how people with dementia maintain continuity in their lives. This longitudinal qualitative study aims to gauge what is important for ‘living well’ with mild-to-moderate dementia and whether this changes over time in a group of older people with mild-to-moderate dementia living at home. Semi-structured, qualitative interviews with 20 people with dementia from the IDEAL cohort study were conducted in 2017 and again one year later then thematically analysed. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. Continuing participation and meaningful occupation were important to maintaining living well over time; individuals pursued new as well as previous interests. As a key psychological coping strategy to support continuity in their lives, individuals emphasised their capabilities to maintain activities in spite of dementia, compartmentalising areas that had become more challenging. Maintaining social networks and accommodating changes in social relationships were also central to living well, including managing the psychological impacts of changes in spousal relationships. People in the earlier stages of dementia emphasise continuity and their capabilities, reporting change over time only in certain aspects of their lives. However, small, incremental changes in their social relationships and opportunities for meaningful occupation may still afford key areas for supporting capability to ‘live well’.
Average lifespans for people with physical disabilities are increasing; yet there is limited knowledge about their perceptions of what it means to age well. The criteria for Rowe and Kahn’s influential model of successful ageing effectively preclude people ageing with a long-term disability. Several authors have attempted to develop more-inclusive models of successful ageing. The aim of this study was to explore what successful ageing means for people ageing with either spinal cord injury (SCI) or post-polio syndrome (PPS). We used an emic-based methodology, and recruited from Australia 17 participants aged 40–78 years. Nine participants (one male, eight female) had acquired poliomyelitis in childhood and experienced PPS, and eight participants (seven male, one female) had acquired an SCI 15 or more years ago. We used semi-structured interviews to elicit participants’ views on the dimensions important to ageing successfully with a disability, and analysed the transcripts using inductive thematic analysis. We identified eight themes, which related to: (1) maintaining physical health, (2) retaining cognitive abilities, (3) a sense of safety and security, (4) being treated with fairness and respect, (5) positive psychological resources, (6) independence and autonomy, (7) social engagement and participation in community and (8) a sense of purpose. We used the findings to construct a multi-dimensional successful ageing model for those ageing with SCI or PPS. The model includes insights from lay perspectives that further illustrate the role broader society plays in supporting or hindering individuals to age successfully, and has implications for health-care and government services.
COMPASS is an educational intervention aimed at supporting individualised goal setting for students on the autism spectrum. Although its effectiveness is supported by quantitative data, little qualitative research has explored the perceived benefits and challenges of implementing COMPASS with community consultants. In the present qualitative study, we explored the benefits and challenges of COMPASS from the perspectives of stakeholders including parents/caregivers, teachers, and consultants. Semistructured interviews and focus groups were recorded and analysed using reflexive thematic analysis. Participants felt COMPASS (a) brings the right information to the table, (b) sets the scene for collaboration, and (c) uses a quality tool for data collection. The fourth theme reflected participants’ concerns around how (d) time could be a barrier. The data for this study has implications for the individualised planning process for students on the autism spectrum, a process directly linked to critical student outcomes. Overall, stakeholders spoke positively about student outcomes, which they linked directly to participation in the COMPASS program. The standardised process for individualised planning provided by COMPASS was particularly valued. Results of the study provide further understanding about the COMPASS intervention and offer a direction for future replications of COMPASS.
This study aimed to describe medical students’ perceptions and experiences with health policy and advocacy training and practice and define motivations and barriers for engagement.
Methods:
This was a mixed-methods study of medical students from May to October 2022. Students were invited to participate in a web-based survey and optional follow-up phone interview. Surveys were analyzed using descriptive statistics. Phone interviews were audio-recorded, transcribed, and de-identified. Interviews were coded inductively using a coding dictionary. Themes were identified using thematic analysis.
Results:
35/580 survey responses (6% response rate) and 15 interviews were completed. 100% rated social factors as related to overall health. 65.7% of participants felt “very confident” or “extremely confident” in identifying social needs but only 11.4% felt “very confident” in addressing these needs. From interviews, six themes were identified: (1) participants recognized that involvement in health policy and/or advocacy is a duty of physicians; (2) participants acknowledged physicians’ voices as well respected; (3) participants were comfortable identifying social determinants of health but felt unprepared to address needs; (4) barriers to future involvement included intimidation, self-doubt, and skepticism of impact; (5) past exposures and awareness of advocacy topics motivated participants to engage in health policy and/or advocacy during medical school; and (6) participants identified areas where the training on these topics excelled and offered recommendations for improvement, including simulation, earlier integration, and teaching on health-related laws and policies.
Conclusions:
This study highlights the importance of involvement in health policy and advocacy among medical students and the need for enhanced education and exposure.
Dignity is perceived as being valued and respected. Maintaining dignity throughout illness is a fundamental principle of palliative care. Dignity can be influenced through family caregiver’s communication, support, and acts of empathy or indifference among other factors. The perception of dignity and the practices adopted by family caregivers to preserve the dignity of their ill relative with serious illness in Lebanon are explored in this paper.
Methods
This is a part of a larger study that explored the understanding of dignity from patients’ and family caregivers’ perspectives in a palliative care context. Data collection involved in-depth interviews with 15 family caregivers. Interviews were analyzed using reflective thematic analysis.
Results
Four main themes, that explained how family caregivers understand, and uphold their relative’s dignity during illness, were developed:
(a) Familial duty expressed through presence and compassion;
(b) Holistic care and financial stability;
(c) Social connection and family roles;
(d) Compassionate services and communication.
Family caregivers maintained the dignity of their ill relatives through being there, compassionate communication, supporting the personal and medical needs of the patient, and helping them preserve their family role. Family caregiving was often underpinned by religious values and a sense of duty. Compassionate services and effective communication were essential to preserve dignity of the ill relative during hospitalizations.
Significance of results
Family caregivers assume multiple roles in fostering the dignity of relatives with serious illnesses. It is crucial that family caregivers are supported by policies, healthcare systems, and community initiatives as patients cannot thrive nor sustain dignity without their support.
The recent wave of clinical trials of psychedelic substances among patients with life-limiting illness has largely focused on individual healing. This most often translates to a single patient receiving an intervention with researchers guiding them. As social isolation and lack of connection are major drivers of current mental health crises and group work is expected to be an important aspect of psychedelic assisted psychotherapy, it is essential that we understand the role of community in psychedelic healing.
Objectives
To explore how psychedelic guides in the United States discuss the role of “community” in naturalistic psychedelic groups.
Methods
This is a secondary qualitative data study of data from a larger modified ethnographic study of psychedelic plant medicine use in the US. Fifteen facilitators of naturalistic psychedelic groups were recruited via snowball sampling. Content analysis was used to identify themes.
Results
Participants viewed the concept of community as essential to every aspect of psychedelic work, from the motivation to use psychedelics, to the psychedelic dosing experience and the integration of lessons learned during psychedelic experiences into everyday life. Themes and subthemes were identified. Theme 1: The arc of healing through community (Subthemes: Community as intention, the group psychedelic journey experience, community and integration); Theme 2: Naturally occurring psychedelic communities as group therapy (Subthemes [as described in Table 2]: Belonging, authenticity, corrective experience, trust, touch).
Significance
Results suggest that existing knowledge about therapeutic group processes may be helpful in structuring and optimizing group psychedelic work. More research is needed on how to leverage the benefit of community connection in the therapeutic psychedelic context, including size and composition of groups, selection and dosing of psychedelic substances in group settings, facilitator training, and role of community integration. Psychedelic groups may provide benefits that individual work does not support.
Academic-community research partnerships focusing on addressing the social determinants of health and reducing health disparities have grown substantially in the last three decades. Early-stage investigators (ESIs), however, are less likely to receive grant funding from organizations like the National Institutes of Health, and we know little about the facilitators and barriers they face on their career journeys or the best ways to support them and their community research partnerships. This study examines ESIs’ experiences with a program that funded and supported their community-partnered pilot health disparities research.
Methods:
Fourteen ESIs from five cohorts of pilot investigators participated in in-depth focus groups between April 2020 and February 2024. Two reviewers independently identified significant quotes and created codes. Thematic analysis was used to develop relevant themes.
Results:
The overarching theme was that the program was a launch pad for the ESIs’ research careers. Four distinct sub-themes contributing to the launch pad theme were: (1) ESI Growth & Adaptation; (2) Community and Support; (3) The Value of Collaboration and Partnership; (4) Need for Effective Mentorship. The results suggest the program offered ESIs and community partners substantial, unique support and resources, but challenges remained.
Conclusions:
Future programs helping ESIs who conduct community-engaged research to launch their research careers should consider implementing tailored support while offering strategies to eliminate or reduce institutional barriers, including strengthening mentoring.
To explore mothers’ and early childhood (EC) educators’ experiences of breast-feeding/breast milk provision and breast-feeding support in child care centres (CCC) in the USA.
Design:
We conducted one-time, semi-structured phone interviews with mothers and EC educators to examine perceptions of support, accommodations and barriers to breast-feeding in CCC. We administered a background survey to assess participant characteristics and quantify perceived degree of breast-feeding support in the workplace (mothers) and CCC (mothers and EC educators).
Setting:
US-based CCC
Participants:
Fifty working mothers using CCC for their infants and twenty-two EC educators
Results:
Interview themes and background surveys reflected neutral feelings towards breast-feeding support received (mothers) and provided (EC educators) in CCC. Maternal expectations for breast-feeding support in CCC were generally low; workplace and social support for breast-feeding were perceived as the most important factors impacting breast-feeding. EC educators’ capacity to offer breast-feeding support was constrained by CCC infant feeding regulations, inadequate breast-feeding training and time limitations. Tensions arose when mothers attempted to manage low milk supply at the CCC level by requesting EC educators to individualise feeding or milk storage practices for their infant.
Conclusions:
Breast-feeding efforts of working mothers are undermined in multiple settings, including the workplace and CCC. Improving breast-feeding outcomes for this population requires structural/policy changes that: (1) maximise opportunities for continued, direct breast-feeding and maternal/infant proximity and (2) enforce evidence-based CCC feeding protocols and standards and EC educator lactation training.
This study aimed to explore healthcare experiences of rural-living patients both with (attached) and without (unattached) a local primary care provider.
Background:
Primary care providers serve a gatekeeping role in the Canadian healthcare system as the first contact for receiving many health services. With the shortage of primary care providers, especially in rural areas, there is a need to explore attached and unattached patient experiences when accessing healthcare.
Methods:
A cross-sectional survey of rural patients both with (attached) and without (unattached) a primary care provider was conducted July–September 2022. An open-ended question gathered participants’ thoughts and experiences with provider shortages.
Findings:
Overall, 523 (Mean age = 51 years, 75% female) rural British Columbia community members (306 attached; 217 unattached) completed the survey. Despite similar overall health, unattached patients received care less frequently overall compared to attached patients, including less frequent non-urgent and preventive care. The vast majority of attached patients sought care from a regular provider whereas unattached patients were more likely to use walk-in, emergency department, and urgent care and 29% did not seek care at all. Overall, 460 (88.0%) provided a response to the open-ended doctor shortage question. Similar themes were found among both attached and unattached participants and included: i) the ubiquity of the doctor shortage, ii) the precariousness or fluidity of attachment status, and iii) solutions and recommendations. Greater attention is needed on the negative and cyclical impacts provider shortages have for both attached and unattached patients alike.
Over the last couple of decades, there has been a growing awareness of the value of community-engaged research (CEnR). Simultaneously, many academic institutions have established centralized support for CEnR. For example, dozens of academic medical centers in the United States receive National Institutes of Health (NIH)-funded Clinical and Translational Science Awards (CTSAs) and have embedded community engagement programs (CE) whose primary expertise and mission is to advance CEnR at their institutions.
Methods:
As part of a larger interview study aiming to learn more about how institutional CE programs and HRPPs work together, we analyzed interviews with CE program leaders at academic medical centers that receive funding from the NIH CTSA program to identify barriers and strategies to conducting CEnR at their institutions, primarily focusing on the relationships with Institutional Review Boards (IRBs).
Results:
We identified three categories in the interviews: barriers and strategies vis-à-vis IRBs to address 1) CE/IRB relationships; 2) Understanding issues; and 3) Structural and resource issues.
Conclusions:
CTSA CE program leaders have experience implementing solutions to common barriers to IRB review faced by CEnR researchers. The barriers they face in these three categories and the strategies they use to overcome them can provide helpful insights to others who hope to facilitate CEnR research at their institutions.
Pandemic-related restrictions in nursing homes have undermined the critical role that family and friend caregivers play in enhancing resident quality of life. We examined how family caregiver access restrictions in nursing homes were implemented and how they impacted the mutual well-being of and relationships between residents and their caregivers over time. Between March 2021 and March 2022, 24 ‘designated caregivers’ in Atlantic Canada were interviewed three times. We identified changes in family relationships and activities over time, constricted support networks, the increasing need for advocacy and monitoring, and the generally negative cumulative impacts of restrictions, especially during residents’ end-of-life. Subsequent adaptations to access restrictions allowed caregivers to contribute to essential monitoring, care relationships, and advocacy roles. We argue that the role of designated caregivers in nursing homes must be maintained during public health emergencies to ensure resident’s supportive family relationships and general well-being.
This study used the Behaviour Change Wheel (BCW) and Theoretical Domains Framework (TDF) to identify parental factors that are associated with increasing their child’s fruit and vegetable consumption. The information gathered enabled a behavioural diagnosis and the identification of intervention functions to increase fruit and vegetable consumption in children.
Design:
A qualitative design using open-ended online survey methodology was utilised.
Setting:
United Kingdom.
Participants:
Twenty-eight parents of primary school-aged children (4–11 years) aged 29–51 years participated.
Results:
Thematic and summative analysis identified skills in preparation and cooking, awareness of and desire to increase fruit and vegetable intake, knowledge of the recommendations and better health for their child as the main facilitators. The main barriers were time and financial constraints, their child’s food preferences and refusal to eat fruit and vegetables, negative role modelling from parents and grandparents and beliefs that fruit and vegetable intake will increase with age. For behaviour change to occur, ‘knowledge’, ‘social influences’, ‘environmental context and resources’, ‘beliefs about consequences’ and ‘beliefs about capabilities’ need to be altered.
Conclusions:
Novel findings suggest that future intervention development should focus on parental beliefs and skills around how to increase fruit and vegetable consumption as their child ages and expanding parental knowledge on the benefits of fruit and vegetable consumption such as mental and future health. The use of the TDF and BCW identified appropriate intervention functions that will guide future behaviour change techniques, modes of delivery and policy categories that best target increasing children’s fruit and vegetable consumption.
The objective of this study was to explore barriers and facilitators to utilising a range of food assistance resources as reported by parents living with or at risk for food insecurity (FI), as well as parents’ recommendations for improving utilisation of these resources. Qualitative data from semi-structured interviews about parents’ perspectives on interventions to address FI were analysed using a hybrid deductive/inductive thematic approach. Parents were drawn from the larger Family Matters longitudinal cohort study (N = 1,307), which was recruited from primary care clinics in Minnesota. Forty racially and ethnically diverse parents (Mage = 38.5 years; 97.5% mothers; 85% parents of colour) were recruited by food security level, with ten parents representing each level (i.e. high, marginal, low, very low). Six overarching qualitative themes were identified, which indicated the importance of (1) comfort level seeking assistance; (2) routine screening to assess need; (3) advertising, referrals, and outreach; (4) adequacy of policies and programmes to address need; (5) resource proximity and delivery; and (6) acceptability of foods/benefits provided. With some exceptions, these themes were generally represented from more than one angle (i.e. as barriers, facilitators, recommendations) and raised as relevant across different types of assistance (e.g. federal food assistance programmes, food pantries) and different settings (e.g. schools, healthcare). This study identified key factors influencing food assistance utilisation across multiple dimensions of access. These factors—which range from psychosocial to logistical in nature—should be considered in efforts to expand the reach of food assistance programmes and, in turn, improve food security among families.
Transportation plays a vital role in meeting the daily activity needs of individuals, including older adults. One major gap in the existing ageing and mobility literature is that most studies are situated in the Global North despite Global South cities facing comparatively faster ageing. This article’s primary purpose is to examine the daily lived experiences of transportation use among older adults in Mexico City. Secondarily it explores contextual differences among individuals living in two neighbourhood types – those with high or low access to public transportation networks. We conducted semi-structured interviews with 22 older adults and isolated four central themes that encapsulate their experiences of transportation in Mexico City. The extensive and well-run structured-transit system in central Mexico City was the source of many positive experiences for older adults, especially regarding affordability, high network connectivity and overall sense of safety and comfort. This was true for most participants across neighbourhood types and socio-economic statuses. Conversely, in peripheral neighbourhoods dominated by less-structured transportation modes, negative experiences included complaints about vehicle drivers, crime and safety, comfort and convenience. This article’s contributions are showing (1) consistency with existing Global South literature whereby older adults tend to use public transportation more widely and hold similar complaints related to poor experiences as older adult passengers; (2) that Mexico City exemplifies older adult transportation experiences that are dramatically different from car-dependent societies in the Global North; and (3) how older adults’ experiences with public transportation can vary significantly based on residential location within the city.
In this chapter we focus on ethical challenges for researchers who are engaged in qualitative digital research. We argue that the digital world has opened up huge opportunities for qualitative researchers, but it has also brought complex and multi-layered ethical challenges for qualitative researchers to navigate. Although we consider that there can no longer be a clear-cut rule book of “If–Then” ethical actions, we do offer examples drawn from researchers working in a range of disciplines and share how they have identified, navigated, and addressed the ethical issues raised when working digitally.
During the COVID-19 pandemic, collecting data online was the only option for many researchers. This chapter describes the barriers to, advantages of, and key lessons learned in conducting online interviews during the pandemic. We draw on a qualitative study focusing on employment experiences during the pandemic among youth with and without disabilities. Thirty interviews were conducted synchronously via Zoom. Barriers to conducting online interviews included technical difficulties and some challenges with building rapport. Benefits of conducting online interviews included greater efficiency and flexibility, technical advantages, and perceived anonymity and privacy. Key lessons learned in conducting online interviews included testing equipment in advance and having a back-up recorder, giving participants questions in advance or having it on the shared screen, and providing technical information to participants in an easy-to-understand format.
Many companion kittens entering shelters are fostered by volunteer community members during the sensitive period for socialisation (~2 to 9 weeks of age) when early experiences are critical to behavioural development. Using a mixed-method survey, we explored current fostering practices relevant to kitten behavioural development and welfare. Foster caretaker participants (n = 487) described their fostering practices and reported providing kittens with a majority of recommended socialisation experiences, such as handling and exposure to various toys and exploratory items. In open-ended text responses, foster caretakers described how they adapted socialisation practices for fearful kittens and the supports and challenges they perceived to impact their ability to properly socialise kittens. Some non-recommended techniques (e.g. flooding) were reported for socialising fearful kittens, with a decreased odds of reporting non-recommended techniques for participants with a higher level of agreeableness personality trait and an increased odds of reporting if fostering practices had been impacted by the COVID-19 pandemic. Foster caretakers reported feeling supported through shelter-supplied resources, personal knowledge, external support, and having access to socialisation opportunities; however, faced personal (e.g. time constraints), shelter-specific (e.g. lack of shelter support), and kitten-specific challenges (e.g. kitten illness). This study highlights the perspectives of foster caretakers as related to optimal socialisation, behavioural development, and welfare. To identify opportunities for improvement it is important to investigate the socialisation guidelines provided to foster caretakers, with the ultimate goal of enhancing kitten behavioural development for improved welfare, long-term adoption, and caretaker satisfaction.
Motor neuron disease (MND) is a progressive, fatal, neurodegenerative condition that affects motor neurons in the brain and spinal cord, resulting in loss of the ability to move, speak, swallow and breathe. Acceptance and commitment therapy (ACT) is an acceptance-based behavioural therapy that may be particularly beneficial for people living with MND (plwMND). This qualitative study aimed to explore plwMND’s experiences of receiving adapted ACT, tailored to their specific needs, and therapists’ experiences of delivering it.
Method:
Semi-structured qualitative interviews were conducted with plwMND who had received up to eight 1:1 sessions of adapted ACT and therapists who had delivered it within an uncontrolled feasibility study. Interviews explored experiences of ACT and how it could be optimised for plwMND. Interviews were audio recorded, transcribed and analysed using framework analysis.
Results:
Participants were 14 plwMND and 11 therapists. Data were coded into four over-arching themes: (i) an appropriate tool to navigate the disease course; (ii) the value of therapy outweighing the challenges; (iii) relevance to the individual; and (iv) involving others. These themes highlighted that ACT was perceived to be acceptable by plwMND and therapists, and many participants reported or anticipated beneficial outcomes in the future, despite some therapeutic challenges. They also highlighted how individual factors can influence experiences of ACT, and the potential benefit of involving others in therapy.
Conclusions:
Qualitative data supported the acceptability of ACT for plwMND. Future research and clinical practice should address expectations and personal relevance of ACT to optimise its delivery to plwMND.
Key learning aims
(1) To understand the views of people living with motor neuron disease (plwMND) and therapists on acceptance and commitment therapy (ACT) for people living with this condition.
(2) To understand the facilitators of and barriers to ACT for plwMND.
(3) To learn whether ACT that has been tailored to meet the specific needs of plwMND needs to be further adapted to potentially increase its acceptability to this population.
Diagnosis of autism falls under the remit of psychiatry. Recognition that psychiatrists could be autistic is recent. Psychiatrists are the second largest specialty group in Autistic Doctors International, a peer support group for autistic doctors.
Aims
To explore the experiences of autistic psychiatrists in relation to recognising themselves and others as autistic.
Method
This was a qualitative study using loosely structured interviews and an interpretive phenomenological analysis.
Results
Eight autistic senior psychiatrists based in the UK participated. One had a childhood diagnosis, two had been diagnosed in adulthood and the remainder self-identified as autistic as adults. Recognition of autism followed diagnosis of their children or encounters with autistic patients. Barriers to self-recognition included lack of autism training, the deficit-based diagnostic criteria and stereotypical views of autism. Recognising that they were autistic led to the realisation that many colleagues were also likely to be autistic, particularly in neurodevelopmental psychiatry. All participants reported the ability to quickly recognise autistic patients and to develop a good rapport easily, once they were aware of their own autistic identity. Difficulties recognising patients as autistic occurred before self-recognition when they shared autistic characteristics and experiences. ‘If we don't recognise ourselves as autistic how on earth can we diagnose patients accurately?’
Conclusions
Autistic psychiatrists face multiple barriers to recognising that they are autistic. Lack of self-recognition may impede diagnostic accuracy with autistic patients. Self-recognition and disclosure by autistic psychiatrists may be facilitated by reframing the traditional deficit-based view of autism towards a neurodiversity-affirmative approach, with consequent benefits for autistic patients.