Supervised Telerehabilitation and Home-based Respiratory Muscle Training for Post-COVID-19 Condition Symptoms: A Nested Qualitative Study Exploring the Perspectives of Participants in a Randomized Controlled Trial.

OBJECTIVE: The purpose of this study was to describe the experiences of individuals with post-COVID-19 condition symptoms who underwent a supervised telerehabilitation and home-based respiratory muscle training (TSHB-RMT) program. METHODS: A qualitative descriptive study was conducted. Participants were recruited using purposeful sampling. The inclusion criteria consisted of: patients aged over 18 years who presented persistent COVID-19 symptoms of fatigue and dyspnea for at least 3 months after the COVID-19 diagnosis. In total, 28 patients were included. In-depth interviews and researcher field notes were used to collect the data. A thematic analysis was performed. RESULTS: Three themes reflect the patients' perspective on the TSHB-RMT before the program (reasons for participating), during the treatment program, and upon completion of the study. Among the reasons for participation, participants highlighted the absence of improvement and treatment, and feeling abandoned and forgotten by the health system. The treatment required discipline on behalf of the patients. Mondays and Tuesdays were the most difficult days for performing the therapy and the physical therapist was perceived as a tool for adherence, change, and a source of validated information. The patients perceived positive effects quite soon, however, it was necessary to extend the follow-up after completing the program because they abandoned the program due to the lack of guidance for exercise supervision. CONCLUSIONS: This study described relevant aspects that physical therapist professionals should consider when providing TSHB-RMT treatment. IMPACT: TSHB-RMT requires discipline, perseverance, effort, and a commitment to the group. The physical therapist is perceived as the tool that facilitates adherence and participation. The effects are rapidly perceived, leading to improved self-confidence and autonomy, however, it is necessary to increase the follow-up time.

Health care concerns in parents of children with different genetic developmental and epileptic encephalopathies: A qualitative study.

AIM: To describe the experiences and unmet medical care needs of a group of parents of children with developmental and epileptic encephalopathies (DEEs) caused by the SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants. METHOD: A qualitative descriptive study was conducted. Participants were recruited using purposeful sampling. The inclusion criteria consisted of parents of children with DEEs caused by the SCN1A, KCNQ2, CDKL5, PCDH19, or GNAO1 variants, aged between 4 and 10 years old. In total, 21 parents were included. Data were acquired via researcher field notes and in-depth interviews. A thematic analysis was performed. RESULTS: Three main themes were identified: (1) managing symptoms: epileptic seizures are experienced with great uncertainty and are accompanied by cognitive, behavioural, and motor symptoms; (2) accepting treatment: the ideal medication regimen is a challenge and the decision to withdraw or start a new therapy falls on the parents; and (3) therapeutic relationship and medical care: behaviours related to the health professional can hinder the therapeutic relationship with the parents. Parents are apprehensive about going to the emergency department. INTERPRETATION: Professionals in emergency departments should acquire better knowledge of DEEs, welcome parents, and improve treatment for the children. The results of this study can serve as a starting point for a roadmap of relevant caregiver-reported outcomes in DEEs, to be implemented with new clinical trials and aetiology-targeted therapies. WHAT THIS PAPER ADDS: Epileptic seizures are the symptom that is most experienced and feared by parents. The medication regime has no defined protocol and the decision to withdraw a medication is frequently left to parents.

Preocupaciones sobre la atención sanitaria en progenitores de niños con diferentes encefalopatías epilépticas genéticas del desarrollo: Un estudio cualitativo.

OBJETIVO: Describir las experiencias y las necesidades de atención médica de un grupo de progenitores de niños con encefalopatías epilépticas y del desarrollo (EED) causadas por las variantes SCN1A, KCNQ2, CDKL5, PCDH19 y GNAO1. MÉTODO: Se realizó un estudio cualitativo descriptivo. Los participantes fueron reclutados mediante un muestreo intencional. Los criterios de inclusión consistieron en progenitores de niños con EED causadas por las variantes SCN1A, KCNQ2, CDKL5, PCDH19 o GNAO1, con edades comprendidas entre los 4 y los 10 años. En total, se incluyeron 21 progenitores. Los datos se obtuvieron mediante entrevistas en profundidad y notas de campo del investigador. Se realizó un análisis temático. RESULTADOS: Se identificaron tres temas principales: (1) Manejando los síntomas, las crisis epilépticas se viven con gran incertidumbre, y se acompañan de síntomas cognitivos, conductuales y motores que limitan la vida del niño; b) Aceptando el tratamiento, la pauta de la medicación idónea es un reto, la decisión de retirar o comenzar una nueva terapia recae en los progenitores; y c) Relación terapéutica y atención médica, existen comportamientos y acciones del profesional que facilitan o dificultan la relación terapéutica con los progenitores. Acudir al servicio de urgencias es vivido con recelo por los progenitores. INTERPRETACIÓN: Los profesionales de los servicios de urgencias deben conocer mejor las EED, acoger a los progenitores y mejorar el tratamiento de los niños. Los resultados de este estudio pueden servir como punto de partida para una hoja de ruta de los resultados relevantes reportados por los cuidadores de las EED, a implementar nuevos ensayos clínicos y terapias dirigidas a la etiología. QUÉ AÑADE ESTE DOCUMENTO: Las crisis epilépticas son el síntomas más experimentado y temido por los progenitores en las EED. La pauta de la medicación no tiene un protocolo definido y la decisión de retirar una medicación recae en las manos de los progenitores.

Real-world experience of OnabotulinumtoxinA treatment in female patients with chronic migraine: a qualitative study using in-depth interviews.

BACKGROUND: Chronic migraine (CM) causes great disability and affects an individual's quality of life. OnabotulinumtoxinA (OBT-A, Botox®) was the first prophylactic treatment specifically indicated for CM. The aim of this study was to describe the experiences of women with CM treated with OBT-A. MATERIALS AND METHODS: The study design is a qualitative descriptive study. A purposeful sampling of 30 women (mean age, 42.7; standard deviation, 10.6) who had received at least two administrations of OBT-A for CM (PREEMPT protocol) was performed. Data collection included in-depth interviews and researchers' field notes. A thematic analysis was carried out according to qualitative research guidelines. RESULTS: Five themes were identified: (a) A long way to go before Botox®, (b) First time hearing about the treatment and its expectations, (c) The administration of Botox®, (d) Treatment effects, and (e) Follow-up. Patients described a long history of treatment failures prior to the start of OBT-A treatment. Information about this migraine treatment came from the neurologist; following the information, patients had high expectations, including unrealistic expectations regarding the onset and duration of effect. They acknowledged fear of the injections and some discomfort due to the procedure. With treatment, participants reported better migraine control and an improvement in their quality of life. Follow-up had some barriers, such as delayed appointments for subsequent doses, but also strengths, such as effectiveness and few side effects. CONCLUSIONS: Qualitative research offers insight into how patients with CM experience treatment with OBT-A. Our results highlight some relevant aspects that should be considered when providing OBT-A treatment.

Women had unrealistic expectations regarding the onset and duration of OBT-A effect.With OBT-A treatment, women perceived better migraine control and improved quality of life.Follow-up had barriers, such as delayed appointments for subsequent doses.

Carpal tunnel syndrome in the workplace. Triggers, coping strategies, and economic impact: A qualitative study from the perspective of women manual workers.

BACKGROUND: Carpal tunnel syndrome (CTS) may lead to significant work limitations, especially in female manual workers. There is scarce evidence on the perspective of female manual workers with CTS. PURPOSE: To explore the perspective of female workers who suffer from CTS regarding triggers, coping strategies, and economic impact. STUDY DESIGN: A qualitative phenomenological study was conducted involving 18 manual workers with CTS diagnosed by the neurology service of a public hospital. METHODS: Purposive sampling was applied, and data were collected using in-depth interviews and researchers' notes. An inductive thematic analysis was applied to identify themes reflecting the participants' experience. Guba and Lincoln criteria were applied to establish the trustworthiness of the data. RESULTS: The mean age of participants was 40.06 years (SD 9.86). Four themes were identified: (a) coping with work limitations; (b) work activities that aggravate symptoms; (c) relationships at work; and (d) the economic burden of CTS. The effect of work on CTS, daily constraints, work situations that trigger the symptoms, and the strategies used by participants to adapt to their work are described. In addition, they recounted how relationships with managers and coworkers are modified and how CTS affects family finances. CONCLUSIONS: The findings describe aggravating factors among working women, coping strategies used, and the social and occupational impact of CTS.

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study.

PURPOSE: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. METHODS: A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed. RESULTS: This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. CONCLUSIONS: Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.

Clinical and Functional Characteristics of a New Phenotype of SMA Type I among a National Sample of Spanish Children: A Cross-Sectional Study.

Spinal Muscular Atrophy (SMA) type I has classically presented extremely severe clinical features. New pharmacological treatments have led to a new phenotype of SMA. The aim of this study was to describe the current health and functional status of children with SMA. A cross-sectional study was conducted based on the STROBE guidelines. Patient questionnaires and standardized tools were used. A descriptive analysis was conducted establishing the proportions of subjects for each of the characteristics of interest. In total, 51 genetically confirmed SMA type I subjects were included. Fifty-seven percent received oral feeding, 33% received tube feeding and 10% combined both. Moreover, 21.6% had tracheostomies, and 9.8% needed more than 16 h/d ventilatory support. Regarding orthopedic status, 66.7% had scoliosis, and 68.6% had hip subluxation or dislocation. Up to 67% were able to sit independently, 23.5% walked with support and one child walked independently. Current SMA type I is a different entity from the classic phenotype but also from types II and III. In addition, no differences were found between SMA type I subgroups. These findings may enable the professionals involved in the care of these patients to improve their interventions in terms of prevention and rehabilitation measures for these children.

The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team.

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.

Multidimensional analysis of sedentary behaviour and participation in Spanish stroke survivors (Part&Sed-Stroke): a protocol for a longitudinal multicentre study.

INTRODUCTION: Stroke survivors usually experience long-lasting functional, emotional and social consequences that might contribute to sedentary behaviour and participation restrictions, which are important targets to address during rehabilitation. However, the trajectory and inter-relationship between these factors are unknown. METHODS AND ANALYSIS: Part&Sed is a research project based on an observational study design with 6 and 12 months of follow-ups in stroke survivors. In addition, a qualitative analysis of the impact of the stroke on the stroke survivor, validation of the Satisfaction with Daily Occupation-Occupational Balance assessment tool and analysis of the reliability of the Fitbit Inspire 2 activity tracker wristband will be carried out. Participants will be chronic stroke survivors with independent walking capacity. Sociodemographic and clinical data, physical activity, ambulation, sleep, quality of life, anxiety and depression, community participation, and occupational satisfaction and balance, as well as data provided by the activity tracker wristband, will be collected. In addition, if the participant has a primary caregiver, the caregiver will also be monitored. A minimum of 130 participants will be recruited to conduct a random-effects multiple regression model. Mixed models for repeated measures will assess the variation over time of the different variables associated with participation and sedentary behaviour. Psychometric properties (eg, internal consistency, construct validity, test-retest reliability) of the Satisfaction with Daily Occupation-Occupational Balance will be determined. Additionally, intraclass correlation coefficients and minimum detectable change will be calculated to assess intrasubject reliability of physical activity and sleep parameters recorded by the Fitbit Inspire 2. The qualitative analysis process will be carried out using the analysis proposed by Giorgi. ETHICS AND DISSEMINATION: The study received ethical approval from the Spanish Regional Ethics Committee 'Comité de Ética de la Investigación de la Comunidad de Aragón' (PI21/333). The results will be made available via peer-reviewed publications, international conferences and official channels.

Facing symptoms and limitations: A qualitative study of women with carpal tunnel syndrome.

BACKGROUND: Carpal tunnel syndrome (CTS) is a neuropathic pain condition characterised by pain, paresthesia, loss of strength and disability. OBJECTIVE: To explore the experiences of women with CTS regarding the management of symptoms and limitations. METHODS: A qualitative phenomenological study was conducted. Women with a clinical and electromyographic diagnosis of CTS recruited from the Neurology Department of a Public Hospital were included. Purposeful sampling was performed. Data were collected using in-depth interviews and researchers' field notes. Analysis proposed by Giorgi was used. RESULTS: A total of 18 women with CTS were included. Two themes emerged: a) Living with CTS symptoms and limitations: describing the symptoms experienced, triggers of their symptoms and how they define CTS. Also, describing the difficulties that they experience on a daily basis, at home when handling tools, communicating, driving, and at work; and b) developing daily strategies for managing limitations: developing potential daily strategies to overcome daily limitations and/or compensate for them, and seeking professional help. CONCLUSIONS AND SIGNIFICANCE: Current results provide insight on how symptoms and daily limitations are experienced by a group of women with CTS. These findings could help occupational therapists to understand the day-to-day difficulties and the reasons for developing certain strategies.

Emotional Impact and Perception of Support in Nursing Home Residents during the COVID-19 Lockdown: A Qualitative Study.

Social isolation measures implemented in nursing homes during the COVID-19 pandemic generated occupational imbalance, discomfort, and mental health impairment in residents. We aimed to analyze the lived experience of elderly nursing home residents during the lockdown and social contact restrictions resulting from the COVID-19 pandemic. METHODS: Exploratory qualitative study. Information was collected through in-depth interviews and field notes. An inductive thematic analysis was performed and international recommendations for the development of qualitative studies were followed. RESULTS: Twenty-four participants residing in nursing homes were included. Two main themes were identified: (1) emotional impact of the experience of COVID-19 lockdown (subthemes: experience of contradictory feelings; illness and death; importance of routine; feeling busy; and role of religious beliefs); and (2) support as a therapeutic tool (subthemes: family support; peer support; and professional support). CONCLUSION: Social restrictions by COVID-19 caused significant changes in residents' occupations and routines, producing fear, loneliness, and abandonment of desired occupations; however, very important supports were also identified that helped to overcome the lockdown, such as social support, spirituality, and gratitude.

Understanding the Non-Surgical Treatment Experience of Female Patients with Carpal Tunnel Syndrome: A Qualitative Study.

Carpal tunnel syndrome (CTS) is a peripheral neuropathy of the upper extremity, characterized by pain, loss of strength, and decreased fine motor function. This study describes the experiences of women with CTS who received non-surgical treatments. A qualitative phenomenological study was undertaken. Purposive sampling was used. Women with clinical and electromyographic diagnoses of CTS were included. Eighteen in-depth interviews were conducted among women with CTS, and field notes were kept. The Giorgi's approach was used for qualitative analysis of the data collected. Five themes emerged: (a) Seeking help and waiting for a diagnosis, (b) trying non-surgical therapeutic options, (c) avoiding invasive options, (d) treatment expectations, and (e) relationships with clinicians. The women described how diagnoses were delayed because women delay seeking help and referrals to medical specialists. Women avoid surgical options and prefer to opt for more conservative approaches, such as splinting or physical therapy. The main reason for avoiding surgical treatment is the fear of limitations and that surgery will not fully eliminate the symptoms. Conflicts may arise in the relationship with the clinician, and they demand to be able to participate in the decision-making process.

The impact of digital physical therapy during COVID-19 lockdown in children with developmental disorders: A qualitative study.

BACKGROUND: Digital physical therapy was performed within early intervention sessions for children with developmental disorders during the COVID-19 pandemic. There is no known qualitative study that addresses the perspectives of parents with digital practice for early intervention. OBJECTIVE: To describe the parents' experiences with digital physical therapy for early intervention in children during COVID-19 lockdown. METHODS: A qualitative phenomenological study. Purposive sampling was conducted, including 16 parents of the children participating in the early intervention program. Data were collected through semi-structured interviews and researchers' field notes. An inductive analysis was performed. RESULTS: Four themes emerged: a) ambivalent experiences about digital physical therapy: telehealth can be a good solution in times of COVID-19, however, it was also perceived as difficult and insufficient; b) barriers encountered for its implementation: describing factors related to physical aspects, training, and time, and difficulties maintaining the child's attention; c) perceived facilitators during its use: based on digital accessibility, availability, and adaptability of the therapist and the rest of the family; d) future possibilities of digital physical therapy: suggested uses for after the lockdown, such as a complement that facilitates communication and as a follow-up with older children. CONCLUSIONS: Our findings help shed light on the possible benefits of digital physical therapy in children with developmental disorders, considering the perspectives of families. However, there are several difficulties to be overcome to successfully implement this type of therapy and optimize its future possibilities.

Multisensory stimulation to promote feeding and psychomotor development in preterm infants: A systematic review.

BACKGROUND: Sensory stimulation is an intervention that, through peripheral stimuli, can facilitate brain organization, due to neuronal plasticity and cortical reorganization. The objective of this study was to evaluate the evidence about the effects of a multisensory stimulation program, applied on preterm infants, compared to any intervention or standard care, to improve feeding behaviour, and psychomotor development. METHODS: The data sources included Medline (pubmed, EBSCO), Scopus and Web Of Science. The studies were randomized clinical trials published between 2015 and 2021 that analyzed multisensory stimulation interventions in preterm infants born less than 37 weeks of pregnancy. RESULTS: Nine articles were identified, involving 545 preterm infants between 25 and 37 weeks of pregnancy. The studies applied different combinations of sensory stimulation. These interventions were related to a better time to achieve full oral feeding and higher consumption of human milk at discharge, better psychomotor development and visual function. All studies scored 6 or higher on the PEDro scale meaning good quality. CONCLUSION: Multisensory stimulation in preterm infants may improve feeding, psychomotor development, and visual function.

Volunteering as a Meaningful Occupation in the Process of Recovery From Serious Mental Illness: A Qualitative Study.

IMPORTANCE: Volunteering is an activity that facilitates social welfare, a sense of connection to others, and the construction of links with other people and the community. OBJECTIVE: To describe the experience of a group of people with serious mental illness (SMI) who engaged in community volunteer work. DESIGN: Qualitative, phenomenological study using purposeful sampling and an inductive thematic analysis. SETTING: Several mental health community centers in Madrid and Catalonia, Spain. PARTICIPANTS: People with SMI engaged in community volunteer work. Outcomes and Measures: In-depth interviews were used to collect data. RESULTS: Two themes, with four subthemes each, emerged from the data: (1) engaging in a meaningful occupation enhances the recovery process (subthemes: undergoing positive experiences, performing or resuming a meaningful occupation, living in the present moment, and relating with one's social and family environment) and (2) a process of mutual support (subthemes: in helping others, you help yourself; helping others on the basis of one's first-person experience; recover before you can help others; and role of professionals in volunteering). CONCLUSIONS AND RELEVANCE: Volunteering is perceived as a meaningful occupation. Helping others generates a reciprocal benefit that favors the recovery process and contributes to the establishment of personal and social bonds. What This Article Adds: This study provides a basis for understanding the potential of volunteering to be a meaningful occupation in the recovery process of people with SMI. It can help occupational therapy practitioners develop volunteer-based intervention programs that support the recovery process.

Aquatic Therapy for Persons with Neuromuscular Diseases - A Scoping Review.

BACKGROUND: Aquatic exercise is among the most common physical activity modalities performed by people with disabilities. OBJECTIVE: The present paper reviews currently-available research on aquatic therapy (AT) for persons with neuromuscular diseases (NMD). METHODS: A scoping review of the existing literature was conducted on PubMed, Embase, Medline, Scopus, Web of Science, SPORTdiscus, CINAHL and Lilacs from the earliest date available until October 2020. It follows the methodological framework for conducting a scoping review proposed by the Joanna Briggs Institute. RESULTS: A total of 28 articles were analyzed and the study parameters grouped by the topography of NMD; most of the studies (n = 16) addressed myopathies. A considerable increase in the number of studies was found over time, and heterogeneity was identified across and within AT interventions for persons with NMD; hence, to allow more effective interpretation of study results, there is a need to standardize the fundamental parameters and procedures for AT. CONCLUSIONS: This scoping review provides a comprehensive outline of available literature; the findings could serve as a starting point for clinical studies on the effects of AT on persons with NMD, and encourage a more coherent approach to their design.

"Your Life Turns Upside Down": A Qualitative Study of the Experiences of Parents with Children Diagnosed with Phelan-McDermid Syndrome.

(1) Background: Parents of children with rare diseases experience great uncertainty and employ different strategies to care for their children and cope with the disease. The purpose of the present study was to describe the perspective of parents with children with Phelan McDermid Syndrome (PMS). (2) Methods: A non-probabilistic purposeful sampling was used to perform this qualitative descriptive study. Thirty-two parents with children with PMS were interviewed. In-depth interviews and research field notes were analyzed using an inductive thematic analysis. (3) Results: Four themes emerged from the data. "Understanding and accepting the disease" described how parents experienced their child's diagnosis and the lack of information. The second theme, called "Living day by day", highlighted the daily difficulties faced when caring for a child with PMS. The third theme, "Expectations versus reality", was based on the parents' expectations of parenthood and the reality they face. Expectations for the future are also included. Finally, "Pain and happiness" describes how parents alternate feelings of distress and suffering but also joy with what they learn from these experiences. (4) Conclusions: Health professionals can use these results to support parents.

Impressions of aquatic therapy treatment in children with prolonged mechanical ventilation - clinician and family perspectives: a qualitative case study.

PURPOSE: To describe the experiences of applying aquatic therapy (AT) to children with ventilation needs after discharge from the paediatric intensive care unit (PICU). MATERIAL AND METHODS: A qualitative and descriptive case study with integrated units. Purposive sampling was carried out, including the parents of the children participating in the AT programme and the healthcare professionals treating them. Fourteen participants were included: four parents, five physicians, three physiotherapists and two nurses. The study was carried out as part of a program on AT in critically ill children. Semi-structured interviews were conducted. A thematic analysis was performed. RESULTS: Three themes were identified. Theme (1) Difficulties for implementation: AT was not perceived as a viable therapeutic modality; lack of knowledge and resources. Theme (2) Risks and challenges: Perceptions of anxiety at the beginning; planning and precautions. Theme (3) AT facilitates new possibilities and benefits: The necessity of the presence of parents during the AT session; a sense of "normalcy;" outcomes of AT in relation to post-intensive care syndrome. CONCLUSIONS: Our results will help to better understand a safe and feasible way to work with children with PPMV, even though this approach is not yet widespread due to its special circumstances. These results can be used in future AT programmes in children undergoing special treatments.IMPLICATIONS FOR REHABILITATIONChildren with ventilation needs after discharge from the intensive care unit present physical, cognitive, and mental alterations that decrease functional capacity and quality of life.In a relatively small sample, positive outcomes were found for AT in relation to post-intensive care syndrome, enabling children to participate in aquatic therapy activities with the involvement of parents.This study highlighted the positive impact on the quality of life of both children and their parents.Aquatic therapy is a feasible intervention in children requiring prolonged mechanical ventilation, although certain difficulties should be addressed in terms of implementation, together with challenges regarding safety and planning.These difficulties may be overcome by promoting coordination between professionals, creating security protocols, and/or facilitating specialised education for therapists.

Spiritual Care in Advanced Dementia from the Perspective of Health Providers: A Qualitative Systematic Review.

BACKGROUND: Worldwide, 47 million people suffer from dementia. Despite recognizing the importance of spirituality within dementia care, it is still unclear how this should be integrated into dementia services. AIM: To explore the perspective of health professionals regarding the spiritual care of people with advanced dementia. METHODS: A qualitative systematic review was performed following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research guidelines for the study design. The inclusion criteria included original articles published from January 2008 to March 2019, using either qualitative or mixed methods. The quality of the articles included was evaluated using the consolidated criteria for reporting qualitative research, Standards for Reporting Qualitative Research, and the Critical Appraisal Skills Programme. Synthesis of findings was performed using thematic analysis. RESULTS: Twelve studies were included in the review. Seventeen categories were identified, grouped into four themes: (1) the perception of spirituality, including the failure to address the same, (2) the spiritual needs of people with advanced dementia, (3) spiritual needs from health care providers, and (4) addressing spirituality, with the following categories: music, significant activities, among others. CONCLUSIONS: Spirituality is not formally addressed in this population, and professionals do not feel confident enough to be able to integrate spirituality in their care. It is necessary to identify and record the spiritual needs of people with advanced dementia, as well as to design specific care programs.

The Meaning of Volunteering among People with Severe Mental Disorders: A Phenomenological Qualitative Study.

This study aimed to describe the perspectives of people with severe mental disorders who volunteer regarding the relationship between volunteering and work, from the framework of personal recovery. A qualitative phenomenological study was undertaken. Purposive sampling was conducted on people with severe mental disorders who participated in volunteering. In-depth unstructured and semi-structured interviews were used, during which researchers took handwritten field notes. An inductive thematic analysis was applied. Twenty-three participants with severe mental disorders were included (16 men and 7 women) with a mean age of 47 years. Three themes emerged: (a) the relationship between volunteering and working; (b) thinking about a possible future job; and (c) disclosing a mental health condition. Volunteering is perceived as a substitute to working, although not all participants feel able to work, and they do not always disclose that they suffer from a mental health condition.