Daily Family Life Research Articles

Empirical Study on the Pottery Environment and its Contribution to the Economic, Cultural and Institutional Growth of the Community of Huancas, Amazonas, Peru: An Analysis with Smart Pls

This study focuses on analyzing how the pottery environment contributes to the economic, cultural and institutional growth of the community of Huancas, Amazonas, Peru. The research has a non-experimental approach at a descriptive correlational level. A total of 35 pottery families participated in the survey and the data collected were analyzed in SPSS and Smart PLS 4.0 statistical programs. The results indicate that the pottery field in the community of Huancas has contributed positively to economic, cultural and institutional growth (0.942; 0.935 and 0.915) respectively; this work represents the cultural identity of the community, based on the regular production of pots for cooking food and a great variety of vessels, with women being the main protagonists of these crafts (85.7%). In addition, the results indicate that pottery has promoted experiential rural tourism in the community, thus playing a fundamental role in the daily life of the community's artisan families. This study highlights a little-studied aspect of pottery making, and the results will guide decision-making in the management and promotion of this traditional activity, relating it to other activities such as tourism. Received: 12 July 2024 / Accepted: 31 October 2024 / Published: 05 November 2024

How Do Persons With Disabilities and/or Complex Health Conditions Perceive Oral Health? A Qualitative Study.

This qualitative study aimed to explore the experience and perception of the mouth, oral health, functioning and the social environment amongst adults with disabilities and complex health conditions. Purposive sampling using the maximum variation strategy was performed to select participants with a wide range of experiences in terms of demographics, disability and health conditions. Consent was sought, and semi-structured interviews were conducted, recorded and transcribed verbatim. Within the interpretivist tradition, a phenomenological approach was used to describe the lived, contextualised experience of people in relation to their mouths, as described by participants. Thematic analysis was undertaken. Eighteen participants with disabilities and complex health conditions were interviewed. Twelve individuals had an intellectual disability. Three main themes were identified: perception of the mouth and oral health; symptomatic perceptions and responses to oral health problems; and inter-relationships between the mouth, oral health and the socio-medical environment. The mouth had a central place in the lives of the participants, but its importance was only recognised when oral health problems interfered with daily life, function, social relationships, family life or autonomy. Certain social determinants of health were identified: social exclusion, financial insecurity, lack of autonomy, nutrition and negotiation of services. Oral problems were perceived as an additional burden to those with disabilities or complex health conditions. This study provided insight into the daily lives of adults with disabilities and complex health conditions. It helps to fill the gaps in the existing literature regarding the perceptions of the mouth and oral health, connecting oral function, general health and social environment for this population. This study was registered into ClinicalTrials.gov (NCT04815434).

Navigating Life: Delaware Families Experiencing Homelessness with Young Children.

This study explored the lived experience of Delaware families residing in homeless shelters and motels with young children. We focused on their daily experiences to gain understanding about their day-to-day living to foster understanding about optimal supports that can facilitate more permanent housing arrangements. We used qualitative approaches to obtain descriptions about the daily lives of families experiencing homelessness with young children. Semi-structured interviews were conducted between November 2022 and February 2023. This study analyzes data from three families using open and thematic coding methods. Families experiencing homelessness with young children discussed their struggle to locate housing, attend to day-to-day tasks, and maintain and obtain employment. Having access to conveniently located affordable and available child care and reliable transportation were discussed across the themes. Evidence building through gathering pertinent qualitative information is a critical step toward understanding the needs of families experiencing homeless. Findings from this study can inform state-level policy and state and non-profit agencies' practices. Current policies that support family homelessness could be adjusted to better address connecting families to resources (e.g., direct connection to landlords), transportation (e.g., increasing allotted bus passes, providing a "free" monthly bus pass), and child care (e.g., co-located care - shelter plus child care, funding enrollment slots left "open" specifically for families experiencing homelessness).

Children’s healthy and unhealthy food intake related to parental fear of COVID-19, family communication patterns, and parental controlling feeding practices

ABSTRACT Background The COVID-19 pandemic in 2020 changed the daily lives of families, including their food environments. We tested a conceptual model of potential influences on children’s dietary intake under these conditions. Methods 310 (51% fathers) parents with children ages 5–12 were recruited for an online study. Parents completed questionnaires to measure fear of COVID-19, family communication patterns, parental controlling feeding practices, and child’s healthy and unhealthy food intake. Structural equation modeling was conducted, including a path analysis and a multi-group analysis to compare mothers and fathers. Results Parental fear of COVID-19 was related to more conversation and conformity-oriented family communication patterns, which were associated with more parental controlling feeding practices. Conversation-oriented communication was related to less, while conformity-oriented communication was related to more unhealthy food intake by children. Conclusion Family communication patterns play an important role in children’s dietary intake. Therefore, it may be useful to help parents adopt positive parenting approaches to influence their children’s healthy development.

Exploring the Parental Perspectives and Experiences With the Use of a Home Mechanical Insufflation-Exsufflation Device.

A mechanical insufflation-exsufflation (MI-E) device is a commonly used tool for airway clearance in children with an ineffective cough. Whereas the device has been shown to have multiple benefits, limited evidence exists regarding parents' experiences with its home use in the Canadian context. This study's objective was to explore the perspectives and experiences of parents who receive service through the IWK Health Centre and use an MI-E device at home with their child. The study used an interpretive description design. Semi-structured interviews, conducted with 9 participants, were audio recorded and transcribed verbatim. Transcripts were analyzed using a reflective thematic process. Seven mothers and 2 fathers were interviewed. Following analysis, 3 themes were identified: (1) Learning about the MI-E device described participants' journey from becoming aware of the device to acquiring knowledge and skills about its use; (2) using the device detailed the integral role the MI-E device played in their lives, including decisions around use, and parental role; and (3) changing lives outlined the physical, emotional, and social benefits the device provided to the child and their family. Participants provided detailed descriptions of their journey from learning to integrating the MI-E device into their child's daily routine and family life. Its multiple associated benefits improved the child's and their family's quality of life. However, better education on its use was highlighted as a need for both parents and the health care professionals who work with them.

Effects of outdoor activity time, screen time, and family socioeconomic status on physical health of preschool children.

Experienced 3 years of pandemic-induced home life, in the post-epidemic period, preschoolers in China are falling short of the World Health Organization's standards for screen time and outdoor activities. This notably impacts their physical well-being. The study aims to probe the associations between screen time, outdoor activities, and the physical health of preschoolers, offering insights to shape interventions targeting myopia and obesity prevention in children. A cross-sectional study was conducted in Guangdong Province, involving a representative sample of 23,992 preschoolers and their caregivers recruited through proportional stratified cluster sampling. Data collection utilized the Chinese Early Human Capability Index (CHeHCI, eHCi), a questionnaire on children's media use in daily family life, and Body Mass Index (BMI). Linear regression and binary logistic regression models were employed to analyze the impact of screen time and outdoor activity duration on the physical health of preschoolers. In the high family socioeconomic status (SES) group, children had significantly less screen time compared to those in the medium and low SES groups. Outdoor activity time varied significantly based on SES, with higher SES linked to extended outdoor engagement. Additionally, children's eHCi health dimension score exhibited significant SES-related differences, showcasing higher scores for children in higher SES groups. In terms of gender differences, boys dedicated significantly more time to outdoor activities than girls, yet boys had a notably higher overweight rate. Furthermore, girls demonstrated better health outcomes based on eHCi health scores. A significant association emerged between overweight and screen time in children with high SES, indicating that prolonged screen time was linked to a higher likelihood of overweight based on BMI. Additionally, a substantial negative correlation was observed between children's eHCi health dimension score and screen time. Furthermore, children's outdoor activity time exhibited a significant positive correlation with eHCi health dimension score. Regression analysis revealed that screen time could significantly negatively predict children's physical health score, while outdoor activity time could significantly positively predict children's eHCi physical health score. The current study highlights that family SES, age, and gender play pivotal roles in influencing preschoolers' screen time and outdoor activity duration, with family SES being particularly influential. Higher family SES correlates with reduced screen time, increased outdoor activity, and elevated health levels among children. Importantly, children's screen time negatively predicts their health status, while outdoor time positively predicts their health status.

"It is endless … It is definitely challenging … But we experience growth out of it": negotiation patterns of Jewish Israeli women living in mixed families

ABSTRACT Mixed marriages challenge ethnic, racial and religious belonging. However, over the past few decades, there has been an increase in the number of mixed marriages in the Western world, as well as in Israel. The present study focuses on women living in mixed families in Israel – Jewish women who are married to Muslim Arab-Palestinian men. The study examines the negotiation patterns that these women use in order to shape their identities as women, partners and mothers during their daily family life. To examine how these women negotiate their multiple intersectional identity, in-depth interviews were conducted with 13 Jewish women married or previously married to Muslim Arab-Palestinian men, and who raised children with them. Using a multilayered theoretical perspective, we analyze how these women negotiate with themselves and others in their circles of belonging regarding issues related to couplehood and child rearing. The negotiations conducted by these women take place on two levels (the personal level and the level of external-social relations), where different women are placed on the range between a Jewish-national identity, a hybrid identity, and a Muslim-Arab-Palestinian identity, depending on their intersectional locations and resources, including education, employment and place of residence. The intersectional locations of the women may leverage or limit their negotiation. The identification of these multilayered negotiation patterns contributes to the literature regarding the daily experience of women living in mixed families, particularly in deeply divided societies.

Health promotion and child obesity in the daily life of school children and families

Objectives: to understand the daily life of families of boys and girls in pre-school and basic education in a school in the Barranco Amarillo sector, Magallanes and Chilean Antarctic Region; to know the experience of care related to the prevention of childhood obesity and the promotion of the health of their families. Method: qualitative, descriptive-exploratory study, based on the Comprehensive and Daily Sociology of Michel Maffesoli, with the participation of twelve families. Results: families have knowledge about good health, trying to eat healthy, but it is difficult for them to apply them because they do not find an appropriate routine, due to the higher cost of healthy foods, sedentary lifestyle, and the preference for fast foods, among others. Conclusion: it is necessary to establish intervention strategies in the prevention of childhood obesity, focusing on health promotion, for a dignified and healthy life.

The Development of a Family and Community-based Treatment and Rehabilitation Model for Substance Users

Introduction Substance abuse has severe impacts on daily life and property of patients, families, and communities. Treatment and rehabilitation of drug users through a family and community-based approach is a key to promote and support family and community participation in addressing substance abuse. This approach centers on the patients, their families, and their communities, which enhances the effectiveness and sustainability of substance abuse resolution. Objectives 1) To describe nurses’ and health team’s perception regarding factors influencing the treatment and rehabilitation of substance users through a family and community-based approach, and 2) To develop a family and community-based treatment and rehabilitation model for substance users. Design This study employed Research and Development, conducted in four phases. This article presents phases 1 and 2. Methodology The development of a family and community-based treatment and rehabilitation model for substance users in phase 1 consisted of 2 steps: 1) Describing nurses’ and health team’s perception regarding factors influencing the treatment and rehabilitation of substance users through a family and community-based approach, 2) Evaluation of the existing treatment and rehabilitation model for substance users. Phase 2 included the development of a new treatment and rehabilitation model for substance users through family and community based within the network of Phetchabun Province, using Appreciation-Influence-Control process. Data were collected from January to April 2024, utilizing a questionnaire on perceptions of factors affecting the rehabilitation of substance users through a family and community-based approach, and a guideline for focus group. Data analysis employed descriptive statistics including percentage, mean, standard deviations, Min-Max, and median. Qualitative data used content analysis. Results The nurses and health team perceived factors affecting the treatment and rehabilitation of substance users within the community at a high-level including knowledge and skills, roles and responsibilities, structures, participation, and management. Evaluation of the traditional model (Community-Based Treatment and Care: CBTx) revealed opportunities for improvement including the database system, family and community participation, and clear coordination, leading to the development of a family and community-based rehabilitation model. The model included five parts: 1) Development of the capabilities of professional nurses and interdisciplinary teams in rehabilitating substance users in the community, 2) Peer support system, 3) Rehabilitation processes, 4) Family and community participation, and 5) Follow-up/empowerment visits. Recommendation Nurses and health team can implement the family and community-based treatment and rehabilitation model for substance users within a community. It is recommended that future studies examine the effectiveness of this newly developed Family and Community-based Treatment and Rehabilitation model for substance users.

Health-Related Quality-of-Life Impacts Associated with Transfusion-Dependent β-Thalassemia in the USA and UK: A Qualitative Assessment.

Individuals living with transfusion-dependent β-thalassemia (TDT) experience reduced health-related quality of life due to fatigue and chronic pain, which cause disruptions to daily life. Currently, limited qualitative data exist that describe these impacts. This study aimed to examine the ways in which symptoms and current treatments of TDT impact health-related quality of life, to holistically describe the humanistic burden of TDT, and to identify the unmet needs of individuals living with TDT. Adults (aged ≥18 years) with TDT and caregivers of adolescents (aged 12‒17 years) with TDT participated in semi-structured one-on-one virtual interviews and focus group discussions. Interviews were conducted in the USA and UK and lasted approximately 60 minutes. After transcription, the interviews were analyzed thematically using a framework approach. A total of ten interviews/focus group discussions (six interviews and four focus group discussions) were conducted with 14 adults with TDT and two caregivers of adolescents with TDT. A framework analysis revealed five themes describing health-related quality of life (negative impacts on daily activities, social life, family life, work and education, and psychological well-being) and three themes describing the lived experience of TDT (impact of red blood cell transfusions and iron chelation therapy, treatment, and stigma). Physical, psychological, and treatment-related factors contributed to negative impacts on daily activities, social and family life, and work and education. Concerns about reduced lifespan, relationships and family planning, and financial independence were detrimental to participants' mental well-being. Participants reported having high resilience to the many physical and psychological challenges of living with TDT. A lack of TDT-specific knowledge among healthcare professionals, particularly regarding chronic pain associated with the disease, left some participants feeling ignored or undermined. Additionally, many participants experienced stigma and were reluctant to disclose their disease to others. Individuals living with TDT experience substantial negative impacts on health-related quality of life that disrupt their daily lives, disruptions that are intensified by inadequate healthcare interactions, demanding treatment schedules, and stigma. Our study highlights the unmet needs of individuals living with TDT, especially for alternative treatments that reduce or eliminate the need for red blood cell transfusions and iron chelation therapy.

A socioemotional network perspective on momentary experiences of family conflict in young adults.

Family conflict is an established predictor of psychopathology in youth. Traditional approaches focus on between-family differences in conflict. Daily fluctuations in conflict within families might also impact psychopathology, but more research is needed to understand how and why. Using 21 days of daily diary data and 6-times a day experience-sampling data (N = 77 participants; mean age = 21.18, SD = 1.75; 63 women, 14 men), we captured day-to-day and within-day fluctuations in family conflict, anger, anxiety, and sadness. Using multilevel models, we find that days of higher-than-usual anger are also days of higher-than-usual family conflict. Examining associations between family conflict and emotions within days, we find that moments of higher-than-usual anger predict higher-than-usual family conflict later in the day. We observe substantial between-family differences in these patterns with implications for psychopathology; youth showing the substantial interplay between family conflict and emotions across time had a more perseverative family conflict and greater trait anxiety. Overall, findings indicate the importance of increases in youth anger for experiences of family conflict during young adulthood and demonstrate how intensive repeated measures coupled with network analytic approaches can capture long-theorized notions of reciprocal processes in daily family life.

Social skills: Assertiveness, teamwork and self-control/emotional expressiveness in early childhood education

The aim of this study was to identify the level of knowledge and practice of social skills, assertiveness, teamwork and self-control/emotional expressiveness in children taking part in the "Full-Time Project" at the Valdir Gonçalves de Lima CEM, in the municipality of Votuporanga-SP. The work is characterized as exploratory of a quantitative and qualitative nature, through pre-post tests and field diaries on the play activities proposed in order to identify the children's knowledge of the chosen skills. The study showed that those surveyed already had an understanding of the social skills in question, since they already had a certain degree of knowledge in the pre-test, with no significant evolution in the post-test, but even though they had knowledge of the subject, they were unable to apply it in their daily school and family life. In this way, the objectives were achieved by creating a bond, showing practical ways of using social skills and making the participants learn about the proposed topic in a fun and entertaining way.

The Effects of Physical Activity in Individuals with Autism Spectrum Disorder: A Qualitative Study

This qualitative study aimed to investigate the effects of physical activity habits on the developmental progress and family dynamics of children with Autism Spectrum Disorder (ASD), as reported by family members. Through semi-structured interviews, the study explored the influence of physical activity on social skills, overall behaviours, and family functioning. The participants comprised 20 parents (11 females and 9 males) of children diagnosed with ASD, aged between 8 and 12 years, residing in Istanbul. The study revealed seven themes: "The Role of Physical Activities in Everyday Existence," "Regular Participation in Physical Activities," "The Frequency and Intensity of Physical Activities," "The Reaction of Children with ASD to Physical Activities," "The Effect of Physical Activities on General Behavior and Social Skills," "The Impact of Physical Activities on Family's Daily Life," and "The Effect of Physical Activities on Family Quality of Life." The findings emphasize the significance of physical activities for children with ASD, illustrating their potential to enhance social skills, emotional well-being, and overall quality of life. Additionally, these activities reduce family stress levels and enhance overall family functionality.In conclusion, based on these findings, physical activities play a vital role in the lives of children with ASD, potentially improving their social skills, emotional well-being, and overall quality of life. Moreover, engaging in such activities can alleviate family stress and enhance family functioning. These results underscore the importance of incorporating physical activities into the lives of children with ASD and provide valuable insights for designing effective intervention strategies to support their development and well-being.

An investigation into mothers' experiences of their children's functional tic-like behaviour and tic attacks.

This is the first study to systematically explore the lived experiences of sudden and new onset of severe functional tics from the perspective of the mother's experiences and describes their attempts to access support services in the United Kingdom. Twenty-One mothers of young people aged between 12 to 17 years with functional tic-like behaviour (FTLB) took part in semi-structured interviews. Thematic analysis of the transcribed interviews revealed gaps and inconsistencies within the process of gaining access to professional services and a lack of support for the management of tics and functional tic-like movements, in addition to highlighting the impact it had on daily family life. The themes generated included the occurrence and development of tics, the severity and intensity of symptoms, the psychological impact on the family and the need to make recommendations for a clear care pathway. Managing the impact of the FTLB and co-occurring conditions such as suicidal ideation and self-harm, as well as the physical and emotional trauma, commonly contributed to feelings of isolation and helplessness, which impacted negatively on the family's ability to function and participate in society. The findings emphasize the urgent need to create a clear management pathway for those experiencing FTLB, including the need for more professionals with relevant knowledge, to improve the dialogue with families during the referral process, whilst prioritising the treatment of anxiety and other identified mental health concerns.

Systemic effects of the COVID pandemic on rural black American men's interpersonal relationships: A phenomenological examination.

The COVID-19 pandemic was a socionatural disaster that unprecedentedly disrupted the daily lives of individuals, families, and communities. Prior research indicates that Black American men living in rural contexts, particularly in Southern parts of the United States of America, were disproportionately affected by the psychological and economic effects of the pandemic. Despite these disparities, few studies have examined the pandemic's impact on rural Black American men's social networks. This study aimed to explore the effects of the COVID-19 pandemic on rural Black American men's interpersonal relationships. Informed by the principles of critical ethnography and guided by van Manen's hermeneutic phenomenology, seventeen men were interviewed using a semi-structured interview protocol. Interviews were transcribed and then analyzed using an iterative thematic reduction process consistent with van Manen's approach. Four themes were generated: Familial Reorganization, Adaptive Fatherhood, Rona Romance, and Essential Community. Participants recounted how the pandemic motivated them to improve their relationships with family members and children but contributed additional stress to their romantic relationships. Participants further recounted how their friendships were the least impacted as they were willing to make exceptions to their normal protective protocols to socialize with close friends. Participants also noted feeling disconnected from their wider community because they could not attend church even though their religious beliefs remained unchanged. Findings highlight the need for scholars, clinicians, and policymakers to consider men's relational health when developing and implementing pandemic recovery efforts, as it can significantly influence their ability to recuperate mentally and physically. Future research should be dedicated to (1) investigating the effects of the COVID-19 pandemic on fathers, as prior research has nearly exclusively focused on mothers' experiences and (2) delineating protective effects of rural Black American men's involvement in the Black Church from their individual spiritualities to gain a more comprehensive understanding of the influence of contextual crisis on their long-term health and wellbeing.

Impact of gastrointestinal and urological symptoms in children with myotonic dystrophy type 1

Gastrointestinal and urological symptoms are frequently reported by people with myotonic dystrophy type 1 (DM1) but have remained understudied. In a cross-sectional study, frequency, nature, treatment and impact of gastrointestinal and urological symptoms in children with DM1 aged 5–18 years were assessed. We included 58 children (30 males, 28 females) with a mean age of 13 years; 74.1 % reported at least one gastrointestinal symptom. Abdominal pain was the most frequently reported symptom (51.7 %), followed by dysphagia (41.8 %), diarrhoea (36.2 %), encopresis (36.0 %), constipation (32.7 %), bloating and flatulence (both 25.9 %). The most frequently reported urological symptoms were difficulty with toilet training (59.3 %), urinary incontinence (22.0 %), enuresis nocturna (10.3 %) and voiding (23.5 % hesitancy, 4.8 % intermittency and 13.8 % dysuria). The majority considered urological and gastrointestinal symptoms to have a negative influence on their daily life; 22.4 % of parents reported severe influence on daily family life (shame, social restrictions, school absence and concerns for their children's future). Considering the high prevalence of urological and gastrointestinal symptoms in children with DM1 and their influence on daily life it is key to correctly recognize, diagnose and treat these symptoms. We recommend screening for gastrointestinal and urological symptoms in the standard of care for children with DM1.

Commentary: Technoference or parental phubbing? A call for greater conceptual and operational clarity of parental smartphone use around children.

Recent years have seen a widespread integration of technology into the daily lives of families. Psychological science has recently started to focus on the use of smartphones by parents while they are engaged in parenting activities, a behavior known under the terms "phubbing," "technoference," "parental screen distraction," and various other terms. We argue that understanding the real impact of co-present smartphone use by parents is inhibited by problems related to the conceptualization and methodology employed in empirical studies. In the present commentary, we identify the features of current research that may contribute to the theory crisis and hamper the progress of psychological research. Specifically, we discuss the implications of (a) inconsistent conceptualization of the phenomenon and (b) suboptimal operationalizations that may prevent us from understanding what is being studied and call for greater consideration of definitional clarity and valid operationalization in future research.

EDUCATION OF CHILDREN IN THE UKRAINIAN PEASANT FAMILY OF KHERSON GOVERNANCE IN THE 19TH-XX CENTURIES: HISTORIOGRAPHICAL ASPECT

The article carries out a historiographic review of the study of the problem of raising children in a Ukrainian peasant family of the Kherson province in the period of the 19th–- 20th centuries. It was found that the problem of raising children in a Ukrainian peasant family during the research period was addressed by Ukrainian researchers and researchers of the Ukrainian diaspora. Emphasis was placed on the educational ideal of the Ukrainian peasantry and the fundamental categories of folk pedagogy.The fundamental categories of folk pedagogy, the main educational ideals and sources of folk pedagogy, the system of Ukrainian ideals and life guidelines of the Ukrainian peasant are substantiated. It is emphasized that peasant families were the bearers of ideas, the Ukrainian educational ideal, the way of thinking, and the transmission of traditions and customs of the Ukrainian people. The basic principles of family education in the Ukrainian peasant family of the Kherson province in the period of the XIX–XX centuries, characteristic features and tasks of family education, regularities and components of the process of classical education of children are highlighted. Emphasis is placed on the educational ideal of the Ukrainian peasantry.It was found that in peasant families, the transfer of social experience of interaction between the sexes to children took place thanks to the use of educational methods that helped children to understand their own social roles, to imitate the patterns of behavior characteristic of both the male and female sexes. It was noted that children’s experience of labor skills was formed in peasant families, moral foundations and rules of their behavior were learned, skills of working life were acquired, children’s understanding of social life was confirmed.The children’s experience of acquiring labor skills, the structure of family upbringing of the specified period are disclosed. The peculiarities, common and distinctive features of raising children in peasant and working-class families, as well as the peculiarities of the daily life of a working-class family, etc., are clarified.

Conjuring Up a King

Conjuring Up a King

A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca.

Hemophilia is a chronic, congenital/hereditary and X-linked disease, characterized by an insufficiency of factors VIII or IX, which are necessary for blood clotting. Those affected by hemophilia often suffer from particular psychosocial problems, both in the acceptance, coping, treatment and self-management of their disease and in their family and social relationships, which are often mediated by these circumstances. The aim of this study was to explore the experiences of people with hemophilia or their family members, of in a specific region of Spain, regarding the impact of having hemophilia. Structured interviews were conducted and developed, using the studies of the World Federation of Hemophilia and Osorio-Guzmán et al. as a guide, as well as a literature review of qualitative work on hemophilia. Data were analyzed using a six-step thematic analysis. A total of 34 interviews were thematically analyzed. The results showed that three key themes emerged from the data: (1) the daily impact of having hemophilia, (2) uncertainty about the disease, (3) the role of associations and (4) support from institutions. The results make it clear that the disease has a major impact on their lives (work, family, leisure and personal environment). The main conclusion is that hemophilia has a negative impact on the daily lives of patients, families and caregivers.