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Children's lives in the Covid‐19 pandemic were subject to unparalleled restrictions on and disruption to their daily lives. This paper explores the day‐to‐day relational, social participation and activities of young children in one East London borough in early 2021, as told through qualitative interviews with their parents. We adopt a social‐ecological model of children's development, a child rights focused understanding of well‐being, underpinned by an agentic view of both parents and children. We find that for some children, parents had additional time to spend with them and new activities were possible. But for others, particularly those living 'compressed lives' in low‐income households and over‐crowded accommodation with no outside space of their own, all three aspects—relational, participatory and activities—were significantly diminished. [ABSTRACT FROM AUTHOR]

mcinnes e., seers k. & tutton l. (2011) Older people's views in relation to risk of falling and need for intervention: a meta-ethnography. Journal of Advanced Nursing 67(12), 2525-2536. Abstract Aim. This paper is a report of a meta-ethnography of qualitative studies of older peoples' views on risk of falling and need for intervention. Background. Falls and falls-related injuries in older people are worldwide problems. A conceptual understanding of older people's views about falls risk and need for intervention is useful for understanding factors likely to impact on acceptance of risk and recommended interventions. Data Sources. Seven electronic databases were searched 1999-2009. Reference lists of included articles were screened for eligible papers. Review Methods. Assessment of quality was carried out. Themes and concepts were extracted using a meta-ethnographic approach to compare similarities and differences across the retrieved studies. A line of argument was developed to produce an explanatory framework of the extracted themes and concepts. Results. Eleven relevant qualitative research articles of reasonable quality were identified. Six key concepts were identified: beyond personal control; rationalizing; salience; life-change and identity; taking control and self-management. A line of argument synthesis describes how older people approach self-appraisal of falls risk and intervention need, and how they cope and adapt to falls risk and intervention need. Conclusion. In response to having an elevated risk status and perceived associations with frailty and impact on an independent life-style, some prefer to adapt to this reality by taking control and implementing self-management strategies. Healthcare professionals should take into account beliefs about risk and negotiate choices for intervention, recognizing that some individuals prefer to drive the decision-making process to preserve identity as a competent and independent person. [ABSTRACT FROM AUTHOR]

Home-care re-ablement or 'restorative' services are a cornerstone of preventive service initiatives in many countries. Many English local authorities are transforming their former in-house home-care services to provide intensive, short-term re-ablement instead. The focus of this paper is on the organisation and content of re-ablement services and the features of their organisation and delivery that have the potential to enhance or detract from their effectiveness. Qualitative data were collected from five sites with well-established re-ablement services. Data included semi-structured interviews with senior service managers in each site; observation of 26 re-ablement visits to service users across the five sites (four to six in each site) and a focus group discussion with front-line staff in each site (in total involving 37 front-line staff). The data generated from all three sources were analysed using the framework approach. All five services had developed from selective pilot projects to inclusive 'intake' service, accepting almost all referrals for home-care services. A number of features were identified as contributing to the effectiveness of re-ablement services. These included: service user characteristics and expectations; staff commitment, attitudes and skills; flexibility and prompt intervention; thorough and consistent recording systems; and rapid access to equipment and specialist skills in the team. Factors external to the re-ablement services themselves also had implications for their effectiveness; these included: a clear, widely understood vision of the service; access to a wide range of specialist skills; and capacity within long-term home-care services. The paper argues that re-ablement can be empowering for all service users in terms of raising their confidence. However, the move to a more inclusive 'intake' service suggests that outcomes are likely to be considerably lower for service users who have more limited potential to be independent. The paper discusses the implications for practice. [ABSTRACT FROM AUTHOR]

Introduction: Many people experience persistent symptoms for more than 12 weeks following SARS‐CoV‐2 infection, which is known as post‐COVID‐19 condition (PCS) or Long COVID (LC). PCS can impair people's quality of life and daily functioning. However, there is a lack of in‐depth research exploring the PCS patient journey, as well as gendered aspects of patients' experiences. Methods: Nineteen semi‐structured qualitative interviews were conducted with people living with PCS in the United Kingdom (13 women, 6 men). Interviews were transcribed verbatim and analysed inductively using reflexive thematic analysis. Results: Five main themes were identified: 'Symptom dismissal', 'Lack of information and support', 'Life before and after Long COVID', 'Psychological impact' and 'Acceptance'. A shift overtime to self‐management of symptoms was evident. These themes represent different stages of patients' PCS journey. Narratives indicated that women highlighted dismissal by healthcare professionals (HCPs), which was not as prominent in men's narratives. In addition, women went into more detail about the psychological impact of PCS compared to men. Conclusion: Women with PCS reported symptom dismissal by HCPs, which may have delayed their diagnosis and negatively affected their well‐being. We were not able to explore the experiences of people from non‐conforming gender groups. Raising awareness of these issues among HCPs, particularly general practitioners, could improve patient care in PCS. Patient or Public Contribution: Patient and public involvement consisted of people who took part in the interviews and commented on the themes' interpretation and study conclusions. [ABSTRACT FROM AUTHOR]

Aims and objectives The aim of this paper is to explore how people live life successfully with Parkinson's disease and what contributed to the level of success. Objectives To examine the level of success as defined by people with Parkinson's disease. To find what contributed to the level of success. Background Self-care support has gained importance for supporting people with their chronic diseases including Parkinson's disease. Although self-care and life adjustments can improve patients' general well-being, it is unclear which approaches best facilitate positive adjustments to illness. Design Semi-structured interviews with participants with Parkinson's disease. Methods Eight participants living with Parkinson's disease for 2-16 years were recruited from a Parkinson's disease voluntary group in the UK. Interviews covered their perceived level of success and the factors which they perceived led to that success. Thematic analysis was used to analyse the data. Results Participants rated a high level of success in living with Parkinson's disease with an average personal rating 75/100 despite facing difficulties. Successful living was perceived to have taken place when people were either (1) able to return to their usual state of health or (2) considered themselves to be stable within a new/readjusted state of health. Aspects which were perceived to support positive psychosocial adjustment included a positive mindset, determination, acceptance of new challenges and family support. Conclusion Maintaining usual life and physical ability is the major concern among the people with Parkinson's disease. It would be helpful for health care professionals to identify what constitutes a 'usual' life for that person and to support them to develop a positive mindset and acceptance of new challenges, drawing on the determination of the person as well as any available family support. Relevance to clinical practice In supporting self-care, it is helpful to gain information about the subjective experience of living with Parkinson's disease including their perceived level of success at the time and what led to that perceived success for that person. [ABSTRACT FROM AUTHOR]

Purpose: In light of the increasing elderly population and the growing demand for home care, the potential of robot support is given increasing attention. In this paper, an inventory of activities was made that threaten independent living of elderly when becoming problematic. Results will guide the further development of an existing service robot, the Care-O-bot®. Method: A systematic literature search of PubMed was performed, focused on the risk factors for institutionalization. Additionally, focus group sessions were conducted in the Netherlands, United Kingdom and France. In these focus group sessions, problematic activities threatening the independence of elderly people were discussed. Three separate target groups were included in the focus group sessions: (1) elderly persons ( n = 41), (2) formal caregivers ( n = 40) and (3) informal caregivers ( n = 32). Results: Activities within the International Classification of Functioning domains mobility, self-care, and interpersonal interaction and relationships were found to be the most problematic. Conclusions: A distinct set of daily activities was identified that may threaten independent living, but no single activity could be selected as the main activity causing a loss of independence as it is often a combination of problematic activities that is person-specific. Supporting the problematic activities need not involve a robotic solution. [ABSTRACT FROM AUTHOR]

This article discusses a paper which explores the experience of falls and balance difficulties for people with Charcot-Marie-Tooth disease (CMT). Mentioned are the six themes which emerged after the researcher asked participants of the focus groups regarding how CMT affects them physically and how CMT affects their ability to walk, namely, frequent falling, cognitive burden of walking, environmental issues, external support, getting off the floor, and the perception of others.

Background and objectives: Caregivers may encounter, or inadvertently cause, refusals of care by a care recipient. Managing refusals of care can be challenging and have potential negative consequences. We aimed to examine caregivers' (care-home staff and family carers) experiences of managing refusals of personal care in advanced dementia. Research design and methods: One-to-one semi-structured interviews with 12 care assistants from six care homes and 20 family carers who were physically assisting a person with advanced dementia with their personal care in the UK. Interviews were audio recorded and transcribed verbatim, with data analysed using qualitative content analysis. Findings: Core to the caregiver experience of refusals of care was knowing the person . This underpinned five key themes identified as caregivers' strategies used in preventing or managing refusals of care: (1) finding the right moment to care; (2) using specific communication strategies; (3) being tactful: simplifying, leaving, or adapting care; (4) having confidence in care; and (5) seeking support from others when safety is at risk. Discussion and implications: Different caregiver relationships with the person with dementia influenced how they managed refusals of care. Refusals of care can place caregivers in tough situations with tensions between providing care when it is seemingly not wanted and leaving care incomplete. Both caregiver groups require support such as coaching, mentoring and/or advice from other health and social care practitioners to manage difficult personal care interactions before crisis points occur. [ABSTRACT FROM AUTHOR]

The purpose of the current review is to synthesize the evidence of patients' perspectives of recovery after hip fracture across the care continuum. A systematic search was conducted, focusing on qualitative data from hip fracture patients. Screening, quality appraisal, and a subset of articles for extraction were completed in duplicate. Themes were generated using a thematic synthesis of data from original studies. Fourteen high-quality qualitative studies were included. Four review themes were identified: recovery as participation, feelings of vulnerability, driving recovery, and reliance on support. Patients considered recovery as a return to pre-fracture activities or "normal" enabling independence. Feelings of vulnerability were observed irrespective of the time since hip fracture and only diminished when recovery of function and activities enabled participation in valued activities, e.g., outdoor mobility. Participants expressed a desire to engage in recovery with realistic expectations and the benefits of meaningful feedback reported. While reliance on healthcare professionals decreased towards a later stage of recovery, reliance on social support persisted until recovery was perceived to have been achieved. Patient perspectives highlighted hip fracture as a major life event requiring health professional and social support to overcome feelings of vulnerability and enable active engagement in recovery. Rehabilitation professionals should ensure expectations and goals are set early in the recovery process. Rehabilitation professionals should ensure goals set with patients are tailored to the individual's pre-fracture activities or "normal" promoting independence. Rehabilitation professionals should monitor goals ensuring they are providing support, motivation, and managing expectations across the care continuum. Rehabilitation professionals should address patients' feelings of vulnerability, particularly in the absence of social support, and ensure appropriate ongoing input to maximize recovery. [ABSTRACT FROM AUTHOR]

The aim of this study was to explore the lived experience of interstitial cystitis (IC)/painful bladder syndrome (PBS). A phenomenological approach with emphasis on reflection and openness was adopted. Twenty women diagnosed with IC an average of nine years prior to data collection produced a written account of their experiences. The textual data was analyzed using thematic analysis. Four themes were derived from data analysis: diagnostic uncertainty; restrictions and limitations on life; self-management; and interpersonal relationships and social support. Women reported issues in receiving a diagnosis of IC, undergoing numerous diagnostic tests, and experiencing multiple referrals. Having undergone numerous treatments with limited success, women sought information and management strategies outside of standard medical care and reported a negative impact on sexual and social relationships. The findings illustrate the complex nature of women's experiences and the physical and psychological impacts and effects of IC/PBS on women's daily lives. [ABSTRACT FROM AUTHOR]

While considerable research has focused on medicalized infertility for women living with involuntary childlessness, far less attention has been placed on men. This exploratory study focuses on four British men using data collected through semi-structured interviews. The data were analyzed using interpretative phenomenological analysis, and four over-arching themes emerged: personal impact of loss; losing interpersonal connections; turning loss into inner strength; and reforming identity through nurturing relationships. The findings highlight the men's grief over their loss and the meaning-making to their everyday lives, adding experiential understanding helpful for health professionals and researchers. [ABSTRACT FROM AUTHOR]

Background: Duchenne muscular dystrophy is a rare genetic neuromuscular disorder, which can result in early death due to disease progression. Ataluren is indicated for the treatment of nonsense mutation Duchenne muscular dystrophy, in ambulatory individuals aged two years and older. This study explored the symptoms and impacts of nonsense mutation Duchenne muscular dystrophy and experience with ataluren. Methods: Qualitative interviews were conducted with caregivers in the UK. Interviews were conducted by telephone, were recorded and transcribed. Data were analysed using thematic analysis and saturation was recorded. Results: Ten interviews were conducted with parents of individuals aged 4–19 years. Key symptoms included muscle weakness and muscle breakdown, which were associated with limitations in physical function and pain. These impacted individuals' daily activities, social activities and emotional wellbeing. These concepts and relationships were illustrated in a conceptual model, along with positive and negative moderating factors. Experience with ataluren and changes since initiation with treatment were discussed. Conclusion: Individuals with nonsense mutation Duchenne muscular dystrophy experience a range of interrelated symptoms and functional issues which impact their broader health-related quality of life. Treatments which address this high unmet need have the potential to improve the health-related quality of life of these individuals. [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. Methods: We conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. Results: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. Discussion: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others. [ABSTRACT FROM AUTHOR]

Objectives: Individuals with a diagnosis of schizophrenia often experience both positive and negative symptoms. Negative symptoms can be disabling and have a serious impact on everyday functioning. Despite the range of clinician‐rated measurement tools used to assess negative symptoms, very little is known about how individuals subjectively experience these symptoms. This study sought to examine, using qualitative methods, how people living with a diagnosis of schizophrenia subjectively experience negative symptoms. Design: Qualitative study. Method: Semi‐structured interviews were carried out with individuals with a diagnosis of schizophrenia who were experiencing negative symptoms. The sample was recruited from community and inpatient National Health Service mental health settings in the United Kingdom. Interviews were analysed using thematic analysis. Results: Twenty individuals took part. Individuals highlighted the persistent and enduring nature of their negative symptoms. Two central themes were identified: What it is like to experience negative symptoms and where have my negative symptoms come from? Within the first theme, four sub‐themes emerged: loss of concentration, loss of motivation, withdrawal, and 'feeling but not feeling'. Within the second theme, four sub‐themes emerged related to the causes of negative symptoms: impact of traumatic life events, positive psychotic symptoms, impact of social network, and recreational and prescribed drug use. Conclusion: Individuals, who experience negative symptoms, were able to articulate the persistent and disabling nature of negative symptoms and clearly described factors which they believed contributed to the onset, exacerbation, and amelioration of the experiences. Practitioner points: Negative symptoms for people diagnosed with schizophrenia are persistent and enduring and impact an individual's life.There has been little research conducted qualitatively on individuals' subjective experiences of negative symptoms.Individuals who experience negative symptoms attribute these to a number of factors, including adverse life events, recreational and prescribed drug use, an absence of social support, and positive psychotic symptoms.Understanding negative symptoms is important for services, clinicians, and family members, where misattributions made about negative symptoms can lead to such experiences being dismissed. [ABSTRACT FROM AUTHOR]

Introduction: This qualitative research explores the experience of partner caregivers and how their partner's dementia impacts on their daily living and occupational lives, with the aim of informing the sustainability of homecare and decreasing the likelihood of formal care. Method: Ten participants were recruited through Alzheimer's Society groups. They were interviewed using the same semi-structured interview process and asked questions about their daily activities and caregiving role. The data was analysed using Braun and Clarke's thematic analysis process and themes generated using inductive coding and reasoning. Findings: Three main themes were identified: (1) losing occupational activities and roles; (2) adapting to a new occupational life and (3) adjusting to a new relationship in the trajectory of their partner's illness. Conclusion: This study highlights the complex occupational challenges experienced by partner caregivers of people with dementia. It suggests that there is a role for occupational therapists in sustaining homecare by working with partner caregivers as 'expert service users'. Involvement should be provided at critical points of the caregiving journey and include co-creating technology solutions for social inclusion, sustaining adaptive engagement in personal occupations, creating opportunities for restoration and supporting caregivers to preserve their partner's personhood. [ABSTRACT FROM AUTHOR]

Background: Twenty four-hour postural care that includes the use of night-time positioning equipment (NTPE) is being increasingly recommended. However, because most of the published studies focus on children, there is a lack of evidence on the use of NTPE in adults. Aim: The aim of this pilot study was to assess the effect of NTPE use in UK care home residents with complex health conditions and postural asymmetry. Methods: Ten care home residents trialled NTPE over a 12-week period. Qualitative and quantitative data were collected before and after each trial using standardised assessment tools. Semi-structured interviews were conducted with participants and relatives after each trial. Staff's views were elicited via two focus groups at the end of the study. Results: There were notable benefits of NTPE use in terms of participants' pain levels, sleep quality, risk of pressure ulcers, risk of choking, and weight. There was also evidence of improvements in participants' function, ability to undertake activities of daily living and quality of life. However, some equipment was abandoned during the trials because participants found it too hot or restrictive. Conclusion: This pilot study increases the evidence base for a personalised approach to 24-hour postural care that can support older people's health and well-being. Further empirical studies are required to determine how NTPE can be used to improve older people's quality of life. [ABSTRACT FROM AUTHOR]

Objective: This qualitative study was imbedded in a randomized controlled trial evaluating the addition of geriatricians to usual care to enable the comprehensive geriatric assessment process with older patients on acute medical units. The qualitative study explored the perspectives of intervention participants on their care and treatment. Design: A constructivist study incorporating semi-structured interviews that were conducted in patients’ homes within six weeks of discharge from the acute medical unit. These interviews were recorded, transcribed, and analysed using thematic analysis. Setting: An acute medical unit in the United Kingdom. Participants: Older patients (n = 18) and their informal carers (n = 6) discharged directly home from an acute medical unit, who had been in the intervention group of the randomized controlled trial. Results: Three core themes were constructed: (1) perceived lack of treatment on the acute medical unit; (2) nebulous grasp of the role of the geriatrician; and (3) on-going health and activities of daily living needs postdischarge. These needs impacted upon the informal carers, who either took over, or helped the patients to complete their activities of daily living. Despite the help received with activities of daily living, a lot of the patients voiced a desire to complete these activities themselves. Conclusions: The participants perceived they were just monitored and observed on the acute medical unit, rather than receiving active treatment, and spoke of on-going unresolved health and activity of daily living needs following discharge, despite receiving the additional intervention of a geriatrician. [ABSTRACT FROM AUTHOR]

Introduction: This study aimed to describe the content of occupational therapy delivered in a randomized controlled trial of United Kingdom care home residents with stroke (The Occupational Therapy in Care Homes (OTCH) trial). The trial intervention aimed to maintain or improve residents' activity levels in relation to personal activities of daily living and mobility. Method: A qualitative design was adopted using content analysis to thematically code and analyse the occupational therapy notes of residents in the intervention arm of the trial. Treatment notes comprised of an initial assessment, a goal and treatment plan and a description of activities at each visit. A purposive sample of 50 sets of therapy notes was selected reflecting the geographical locations, care home types and resident characteristics observed in the OTCH trial intervention group. Findings: Occupational therapists individually assessed residents' function and goals. Planning was sometimes client-centred, but not all residents were able to share personal goals. Carers impacted on the success of the intervention. Treatment outcomes in relation to increasing functional activity were noted in some cases, but not always fully realized in this frail population. Conclusion: Increasing functional activity is challenging in care home populations; future studies should assess occupational therapy for residents in relation to leisure or social activities. [ABSTRACT FROM AUTHOR]

Background: Prospective memory is a common deficit following brain injury that can reduce an individuals' ability to complete everyday tasks. The smartphone is a device that may compensate for these difficulties using the calendar's prompting function. Reminders can be programmed remotely using email to phone synchronization. Objective: To explore whether smartphone reminders help people complete pre-identified tasks as compared to when reminders are not provided. Methods: An ABAB case series design compared reminder present vs. reminder absent phases with regards completion of pre-set tasks. Six participants aged 24-55 with Acquired Brain Injury (ABI) and five caregivers participated in the study. Both completed a series of questionnaires looking at the impact of the smartphone reminders on everyday memory functioning at pre, post and follow-up. A 3-month follow-up questionnaire assessed continued use of the system. Results: There was a significant improvement in task completion rates when smartphone reminders were provided. A thematic analysis identified that smartphone reminders improved independence, confidence in coping with memory difficulties and general mood. All participants were still using the system at 3-month follow-up. Conclusions: Smartphone reminders may provide a cost-effective, accessible and non-stigmatizing tool for participants to compensate for prospective memory difficulties. [ABSTRACT FROM AUTHOR]

Background: Gastrostomy feeding in head and neck cancer patients is recognised standard practice in some cancer centres with beneficial effects on outcomes for appropriately selected patients. However, the impact on patients and care-givers needs consideration. The present study aimed to understand the daily impact of gastrostomy feeding on head and neck cancer patients and their care-givers to identify improvements to services. Methods: Twenty-one adult patients were randomly selected from the Head and Neck centre at University College London Hospital. Six head and neck cancer patients and three care-givers participated in focus groups. The sessions were recorded, fully transcribed and qualitatively thematically analysed, and the resulting data were tabulated. Results: Patients and care-givers expressed opposite experiences within knowledge and understanding of why the tube was necessary; their personal perceptions and objectives of nutritional support. Themes expressing similar experiences included: developing positive coping strategies; preventing nutritional decline; tube dependency; dentures; finance; active care; and psychological support. Furthermore, both groups expressed the benefits of retaining a support network for rehabilitation with the hospital-based specialist team. Also patients and carers recognised that the gastrostomy tube helped patient survival and, with timely dietetic management, helped them wean off the tube reliance with more confidence. Conclusions: It is essential that patients and care-givers attend pretreatment clinics to discuss nutritional support via the artificial route; their quality of life can be enhanced if guided through a specialist support pathway based at the clinical site where they initiated their care, with links to key agencies. [ABSTRACT FROM AUTHOR]