The Effectiveness and Usability of a Rehabilitation Program Using the Nintendo Switch to Promote Healthy Aging in Older People with Cognitive Impairment: A Randomized Clinical Trial.

(1) Background: Healthy aging is the process of developing and maintaining functional capacity and optimizing involvement in order to improve one's quality of life as people age. This study aimed to encourage healthy aging in people with cognitive impairment, as well as a control group, via the use of the Nintendo Switch combined with occupational therapy sessions, aiming to improve gross and fine motor skills, functionality, quality of life, and cognitive status. (2) Methods: A randomized clinical trial was undertaken. The sample was randomized using the OxMar software program Attribution 4.0 International, facilitating the division into a control group (CG), who received conventional occupational therapy sessions, and an experimental group (EG), who received therapy incorporating the Nintendo Switch, in addition to conventional occupational therapy sessions. The intervention period with the Nintendo Switch lasted for 8 weeks. (3) Results: Thirty-two participants were included in the study. Significant differences were found in the vast majority of the variables analyzed, which shows an improvement following the intervention; these improvements were mainly observed in measures of skill and the perception of quality of life. (4) Conclusions: An eight-week intervention with the Nintendo Switch alongside conventional occupational therapy helps to maintain cognitive status and functional independence. Following 8 weeks of intervention with the Nintendo Switch, improvements in gross motor dexterity, fine motor dexterity, and quality of life were observed in older people with cognitive impairment.

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.

Barriers and Facilitators to the Learning and Acquisition of Research Competencies among Nursing Students through Active Methodologies: A Qualitative Study Using Reflective Writing.

BACKGROUND: The development of educational research, critical thinking skills, and evidence-based practice requires proposals for educational innovation. The purpose of this study was to explore the perspectives of undergraduate nursing students on the barriers and facilitators after the implementation of a novel activity within the course of research methodology, composed of three active learning strategies: (a) project-based learning; (b) small-group learning; and (c) self-directed learning. METHODS: A qualitative exploratory study using reflective writing was conducted at the Nursing Department of the Red Cross School (Spain). Seventy-four nursing students participated in the study, enrolled in the research methodology course. Purposive sampling was used. Online reflective notes were collected from a script of open-ended questions. An inductive thematic analysis was performed. RESULTS: The new proposals facilitated learning of the subject matter and its contents. They were useful and enabled the students to put the contents into practice. In addition, they improved the students' organization, planning, and involvement. The barriers identified were a lack of time, ambiguity, inadequate tutoring or novelty of the work, and inequity in the distribution of tasks and workloads. CONCLUSIONS: Our findings shed light on the barriers and facilitators identified by nursing students when implementing an educational innovation proposal, using three active learning methodologies as learning tools for the subject of nursing research.

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.

Social and Family Challenges of Having a Child Diagnosed with Phelan-McDermid Syndrome: A Qualitative Study of Parents' Experiences.

(1) Background: Phelan-McDermid Syndrome (PMS) in children causes significant challenges affecting social and family relationships. The purpose of this study was to explore the experience of parents with children diagnosed with PMS regarding interactions with their social environment; (2) Methods: A qualitative descriptive study was conducted. Participants were recruited using non-probabilistic purposeful sampling. In total, 32 parents of children with PMS were included. In-depth interviews and researchers' field notes were used to collect the data. An inductive thematic analysis was performed; (3) Results: Five themes were identified: (a) challenges in the relationship as a couple; (b) challenges within the family and close social relationships; (c) challenges in the educational-school environment; (d) challenges in the health environment and with health professionals, and (e) reconnection through the PMS association. It would be beneficial for parents to create training programs on PMS in the educational and healthcare settings, to promote the participation of professionals in the PMS association and to develop care programs focusing in their physical, psychological and social health.

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.

Food Intake Changes and Their Impact on Quality of Life in Spanish Citizens with and without COVID-19 during Lockdown.

The pervasive impact of the COVID-19 pandemic is just beginning to be analyzed. To date, only a handful of these studies have investigated the relationship between an individual's quality of life (QoL) and their changes in food intake due to the virus (from the associated symptomatology of diagnosis to the universal impact of lockdown on individual lives, regardless of a person's health status). Therefore, the purpose of this study is to identify changes in food intake resulting from the pandemic and the corresponding impact on QoL in the Spanish population. This study focuses its investigation on the 3-month time period within which lockdown was its most restrictive, March−May 2020. Survey questions ask participants to compare their eating habits, general health status, and QoL during these 3 months to times prior to the pandemic. We conducted an online survey amongst the Spanish population over 18 years old. Three surveys were administered: (1) the adult eating behavior questionnaire (EABQ), (2) EuroQoL-5D-5L, and (3) The determinants lifestyle changes during lockdown period (March to May 2020). A total of 86 participants were included, with a mean age of 34 years. In the analysis of QoL, significant differences were found according to age, sex, and the presence of a COVID-19 diagnosis. Likewise, in the analysis of food intake, significant differences were found by age (greater changes in the 18−29-years-old population) (p< 0.01) and by sex (women p < 0.03), as well as greater changes in those with a diagnosis of COVID-19. Furthermore, both food intake and COVID-19 diagnosis were variables that predicted QoL outcomes. In sum, forced home lockdown can cause changes in food intake, which can predict a lower QoL. It follows that the lockdown situation caused by the worldwide COVID-19 pandemic has affected the food intake and overall QoL of the Spanish population.

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.

Mental Practice and Manipulative Skills Training Among People With Multiple Sclerosis: A Pilot Study.

IMPORTANCE: Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that produces both motor and cognitive dysfunctions. Impairments in limb function as a result of MS cause a decline in the performance of activities of daily living (ADLs). OBJECTIVE: To determine whether the use of mental practice (MP) or MP combined with training in motor manipulation skills (skills training) would improve gross and fine motor skills and treatment satisfaction among people with MS. DESIGN: Pilot study with a duration of 3 mo plus 3-mo follow-up. SETTING: Two MS associations. PARTICIPANTS: Thirty-five patients diagnosed with MS of the relapsing-remitting and progressive secondary subtypes, ages 25 to 60 yr. INTERVENTION: The participants were allocated to one of three groups according to their order of inclusion in the study: (1) MP, (2) MP + skills training, or (3) control group. The treatment protocol had a 6-wk duration and a total of 12 sessions. Outcomes and Measures: Blinded evaluators performed three assessments for each patient (pretreatment, posttreatment, and 3-mo follow-up) using the Nine-Hole Peg Test, Box and Block Test, ABILHAND, and Canadian Occupational Performance Measure (COPM). RESULTS: We found no evidence of benefits in self-perceived performance of ADLs with respect to gross and fine motor skills; however, there was an improvement in perceived satisfaction and in the performance of activities, independent of the treatment received. CONCLUSIONS AND RELEVANCE: Perceived ADL performance and satisfaction with performance increases among people with MS when they receive MP, MP + skills training, and conventional rehabilitation treatment. What This Article Adds: Mental practice combined with conventional treatment could contribute to patients perceiving improved performance of ADLs. Self-reported outcome measures, such as the COPM, could provide highly valuable information about occupation performance that may not match the objective evidence.

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.

Pain management and coping strategies for primary dysmenorrhea: A qualitative study among female nursing students.

AIM: Primary dysmenorrhea is a problem that affects both young and adult women, with a significant impact on their daily lives. This pain is primarily managed through the consumption of non-steroidal anti-inflammatories and non-pharmacological approaches such as exercise, acupressure and heat. The present study aimed to describe how Spanish university students manage dysmenorrhea. DESIGN: Qualitative case study. METHODS: Nursing students (N = 33) from the region of Andalusia (Spain) participated in focus groups. A purposive sampling method was used, and the data were collected through videoconferencing and subsequently analysed thematically. The guidelines for conducting qualitative studies established by the consolidated criteria for reporting qualitative research (COREQ) and the standards for reporting qualitative research (SRQR) were followed. RESULTS: Four principal themes were identified: (a) Strategies for pain management; (b) using painkillers; (c) choosing the ideal treatment; (d) non-pharmacological interventions. CONCLUSIONS: The nursing students experienced difficulties in managing primary dysmenorrhea, they self-medicated, expressed reluctance to seek professional medical advice, used non-pharmacological strategies and seeked advice from other women within their family/social circle.

"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.

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.

The Influence of Self-Perception on Manipulative Dexterity in Adults with Multiple Sclerosis.

BACKGROUND: Multiple sclerosis is a disorder which causes a loss of functionality, affecting the person's ability to perform activities of daily living, such as interpersonal interactions and relationship, dressing, self-care, or bathing, as well as having a negative impact on work and leisure activities. AIMS: This study examined the relationship (correlational or associations/predictive) between self-perceived quality of life and performance of manipulative dexterity. Also, this study sought to measure predictors of dexterity. Study Design. A cross-sectional study from two associations of MS within the Community of Madrid, Spain. Methods and Procedures. A final sample of 30 people with multiple sclerosis. The outcome measures used were the ABILHAND questionnaire, the Purdue Pegboard Test, the Nine Hole Peg Test, and the Box and Block Test. RESULTS: No significant correlations were found between dexterity and self-perception tests; however, correlations were found between perceived dexterity and quality of life (p < 0.001). Scores for the ABILHAND questionnaire, which measures the perception of skills in daily living, predicted up to 60% of the variance in the dexterity tests. CONCLUSIONS: The results of this study suggest that interventions for improving the manipulative dexterity of people with multiple sclerosis should address the person's perception of improving their manipulative dexterity and the perceived of quality of life, as both factors may influence manipulative dexterity.

The Perspective of Physical Education Teachers in Spain Regarding Barriers to the Practice of Physical Activity among Immigrant Children and Adolescents: A Qualitative Study.

Physical activity (PA) contributes to the development of children and adolescents and to their mental and physical health. The practice of PA in the school context can contribute towards generating a more inclusive educational community for immigrant children and adolescents. The aim of this study was to describe the perspectives of Spanish physical education (PE) teachers on the practice of PA among immigrant children and adolescents. This research was a qualitative exploratory study. A purposeful sampling strategy was used. Data were collected through semi-structured interviews and field notes. Twenty teachers were recruited. An inductive thematic analysis and content analysis were applied. The following topics were identified: (a) Professional expectations; (b) Economic resources; (c) Integration; (d) Family; (e) Religious beliefs and practices; and (f) Gender difference. A predominance of positive emotions was identified in the narratives, and the most repeated words in word clouds were 'Caribbean', 'Latin', and 'population'. These findings help to identify PA barriers for immigrant children and adolescents and may contribute to the creation of PA-based interventions in social and educational contexts.

Living with Restrictions. The Perspective of Nursing Students with Primary Dysmenorrhea.

Primary dysmenorrhea (PD) affects a large number of female university students, diminishing their quality of life and hindering academic performance, representing a significant cause of absenteeism. The purpose of our study was to determine how nursing students experienced restrictions as a result of primary dysmenorrhea. A qualitative exploratory study was conducted among 33 nursing students with primary dysmenorrhea. A purposeful sampling strategy was applied. Data were collected from five focus groups (two sessions each) and the field notes of 10 researchers. A video meeting platform was used to conduct the focus groups. A thematic inductive analysis was performed. Thirty-three female nursing students participated in the study with a mean age of 22.72 (SD 3.46) years. Three broad themes emerged: (a) restrictions on daily activities and sports; (b) academic restrictions, and (c) restrictions on social and sexual relationships. The students described restrictions in performing everyday activities, such as carrying weight, and shopping. Some students even gave up the practice of sports and were absent from classes at the university, and from clinical practices at the hospital. The pain affected their ability to maintain and create new social relationships. Primary dysmenorrhea caused restrictions in the personal, social and academic life of the nursing students.

The Meaning of Physical Activity: A Qualitative Study on the Perspective of South American Immigrant Parents.

Physical activity facilitates the acquisition of healthy habits from childhood to adulthood. There are differences in the practice of physical activity between immigrant children and native Spanish children. The aim was to describe physical activity in children, from the perspective of South American immigrant parents. A qualitative case study was conducted. Parents were recruited using purposeful sampling. Data were collected from 12 participants by means of unstructured interviews together with researcher notes. A thematic analysis was applied. The following topics were identified: (a) physical activity and health, (b) socialization, (c) the need for movement, (d) gender, (e) barriers, (f) educational burden, (g) community living, and (h) reason for immigrating. Parents described how physical activity is fundamental and has benefits for health, and for the relationship between children. They perceived that physical activity should not be limited by gender. The time dedicated to other school activities, the norms related to community living, and financial limitations were especially relevant as barriers for the performance of physical activity. These results can be used to revise the curriculum in schools, promote equal opportunities for physical activity and support family participation.

Living with Pain and Looking for a Safe Environment: A Qualitative Study among Nursing Students with Dysmenorrhea.

Dysmenorrhea refers to chronic pain associated with menstruation that is often accompanied by other symptoms. Primary dysmenorrhea (PD) occurs without any associated pelvic disease. Nonetheless, it may negatively affect women's quality of life. Among university students, dysmenorrhea decreases academic performance and is a cause of absenteeism. The purposes of our study were to describe how nursing students experienced PD and the changes affecting their body and mood. A qualitative case study was performed among 33 nursing students with PD. Data were collected through five focus groups (with two sessions each) and 10 researchers' field notes. We used a video meeting platform to conduct the focus groups. A thematic analysis was performed, and the Standards for Reporting Qualitative Research and the Consolidated Criteria for Reporting Qualitative Research guidelines were followed. Three main themes emerged from the data: (a) living with dysmenorrhea, with two subthemes: menstruation and pain; (b) body changes and mood swings; and (c) seeking a safe environment, with three subthemes: safe environment, unsafe environment, and key safety aspects. Students considered menstruation to be negative and limiting, causing physical and mood changes, making them feel less attractive, and conditioning their way of dressing and relating.

Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study.

Rare diseases face serious sustainability challenges regarding the distribution of resources geared at health and social needs. Our aim was to describe the barriers experienced by parents of children with Rett Syndrome for accessing care resources. A qualitative case study was conducted among 31 parents of children with Rett syndrome. Data were collected through in-depth interviews, focus groups, researchers' field notes and parents' personal documents. A thematic analysis was performed and the Standards for Reporting Qualitative Research (SRQR) guidelines were followed. Three main themes emerged from the data: (a) essential health resources; (b) bureaucracy and social care; and (c) time management constraints. Parents have difficulties accessing appropriate health services for their children. Administrative obstacles exist for accessing public health services, forcing parents to bear the financial cost of specialized care. Time is an essential factor, which conditions the organization of activities for the entire family. Qualitative research offers insight into how parents of children with Rett syndrome experience access to resources and may help improve understanding of how Rett syndrome impacts the lives of both the children and their parents.