Family Perspective Research Articles

Evolution of perceptions of motivational climates in youth soccer development and a comparison of opinions between families and players

Motivation is one of the general variables with the greatest influence on behaviour, making it essential to understand the perspectives of various stakeholders as well as the theories that examine it. Furthermore, it stands as one of the primary causes of dropout in adolescent sports participation. The primary objective of this research is to ascertain the assessment of the motivational climate from both players and families in youth football development categories. Specific objectives include validating whether the adaptation of the SMS and AGSYS questionnaires yields congruent results, comparing the perspectives of families and players regarding the motivational climate, and finally, examining the opinions and evolution of the motivational climate among players across different age categories. The sample consisted of 143 individuals from the top-tier teams in youth development stages at the Cuarte Sports Club (Zaragoza, Spain). Descriptive and inferential statistics were employed using the SPSS 22.0 statistical software. The findings indicate that the adaptation of both questionnaires does not measure the same constructs, significant differences exist in the opinions of families and players, and lastly, cadet-level players demonstrate distinct opinions in comparison to other age categories.

THE RELATIONSHIP BETWEEN COLLEGE STUDENTS' SOCIAL SUPPORT AND NETWORK DEPENDENCY RESEARCH

In the information age, the penetration rate of the network is deepening day by day, and college students are becoming one of the groups with high usage rates of the network. College students use the Internet to search for information, browse information, send and receive emails, chat and make friends, play games, and watch live broadcasts. The network has become an important part of college students' studies. However, while the Internet brings a lot of convenience to college students, it also causes many college students to rely on or even become addicted to the Internet. This problem not only has a negative impact on the physical and mental growth of college students but also becomes a practical management problem faced by universities and even the whole education field. Based on summarizing relevant research at home and abroad, this study uses a questionnaire survey and statistical analysis to carry out empirical research. Taking college students in H university as the research object, 502 valid questionnaires were collected. Through regression and mediating analysis, the theoretical hypothesis that college students' social support has a negative effect on Internet dependence and that college students' social efficacy plays a mediating role in the process of social support's influence on Internet dependence was verified. The mediating model of college students' social support, social efficacy, and network dependence was constructed. From the perspectives of family, school, society, and individual students, the research also puts forward some suggestions to reduce college students' Internet dependence and cultivate the correct concept of the Internet.

Family Perspectives of University Reading Clinic/Literacy Lab Experiences: What Matters

Family partnerships should be a central component of teacher preparation. Although research provides family engagement strategies, little research offers teacher educators guidance from the perspectives of families themselves. The purpose of this convergent mixed-method study was to begin to fill the void in the literature by investigating family perspectives of theirs and their children’s experience in 10 reading clinic/literacy lab literacy specialist preparation programs across the United States and Canada. Through analysis of survey ratings ( N = 132) and responses to structured interviews to ( N = 84), this study found that families valued clinic/lab tutors building relationships with them, responding to their children’s strengths and needs, promoting self-efficacy, and working together as partners. Methods used in this study can provide a useful model for how teacher educators can intentionally seek input from families. Findings have implications for teacher educators advocating for and centering family engagement in teacher preparation.

Quality of Life of Primary Caregivers of Children With Cerebral Palsy From a Family Perspective.

Cerebral palsy is a heterogeneous group of permanent non-progressive disorders affecting the development of movement and posture, varying in severity, interfering with daily activity, and associated with multiple comorbidities. Previous studies in different regions of Saudi Arabia have shown links between caregivers' mental health and children's well-being. However, the lack of such research in the Tabuk region necessitates the development of a new survey to assess caregivers' quality of life in this specific area. This was a cross-sectional study, conducted during 2022-2023. It included the caregivers of Saudi children with cerebral palsy in the Tabuk region. Data was collected using an online questionnaire and was analyzed using the SPSS program (IBM Corp., Armonk, NY). The study included 63 participants. Mothers (50.8%) and fathers (46.0%) were the primary caregivers. The comorbidities of cerebral palsy children like seizures (28.6%) and learning difficulties (19.0%) were prevalent for cerebral palsy children. Around 20.6% of participants received home health care. In terms of family quality of life, the majority expressed satisfaction with family interaction, parenting, and emotional well-being, although mixed feelings were observed. The majority of caregivers reported satisfaction in various domains of family quality of life, particularly in family interaction and parenting. However, a notable percentage expressed dissatisfaction in some areas, highlighting the complex emotional and practical challenges faced by these caregivers.

“Now we start to make it like home”: reunited refugee families negotiating integration and belonging

This paper highlights the importance of local and individual context in either facilitating or hindering processes of integration for reunited refugee families settling in unchosen areas. It adds to understandings of integration by analyzing the day-to-day active and processual nature of place-making, from the perspective of families. The findings are based on qualitative interviews with 13 refugee families−21 parents and 8 children aged between 12 and 18, who had recently been reunited in two large cities in the UK: Glasgow and Birmingham. The paper explores the local conditions families identified as conducive to settling in their local area and argues that the process of attaching to their new locales was mediated through the social connections they made. The article contributes to knowledge by demonstrating how families exercised agency and resilience in place-making in unchosen spaces, through the people they met and the relationships they developed. Further, it critiques the tendency to denigrate “exclusive” bonding ties, particularly between co-ethnics and pays attention to the role of friendship in routes to belonging in unchosen spaces.

Affectivity, sexuality, and autism spectrum disorder: qualitative analysis of the experiences of autistic young adults and their families

BackgroundAutistic people have communication, sensorial, and social difficulties, which on many occasions, make their adaptation on the sexual and affective levels difficult. For this reason, it is important to know the opinion of individuals with autism spectrum disorders (ASD) and their families, to offer this perspective to professionals to facilitate adapted health education programs in mental health units.MethodsThis qualitative descriptive design presents the experiences of autistic individuals and their families in relation to the affective-sexual experiences from individual, family, and social perspectives. Two focus group sessions were held with eight family members and seven individual semi-structured interviews with autistic young adults. The transcripts were qualitatively analysed using content analysis.ResultsFour themes (Family and social dynamic; Social behaviour of the autistic individual; Affective-sexual relationships; Addressing affective and sex education) and 13 related categories emerged from these results. Communication and social interaction problems act as barriers for young adults when developing affective-sexual relationships, leading to the emergence of negative feelings and experiences that reinforce avoidance behaviours, further intensifying their difficulties in interacting with others. Families, especially mothers, exhibit a poor perception of their ability to provide affective-sexual guidance, leading to anxiety and frustration. There are also reports of poor sex education and lack of support systems.Conclusions and implications for practiceThe experiences of young people and their families are sometimes conflicting when it comes to affectivity and sexuality, but the parental role emerges as relevant in the sex education process. Families play a pivotal role in sex education, which is why professionals should provide them with support and information through health education programmes, foster empathetic communication and promote sexual and emotional development that is adapted to the characteristics and interests of autistic people.

Perspectives of patients, families and nurses on pain after cardiac surgery: A qualitative study.

Post-cardiac surgery pain affects patients, family caregivers and nurses. The pain experiences of patients, caregivers and nurses remain largely unknown. Therefore, it is important to examine the experiences of patients, caregivers and nurses in depth to ensure effective pain management. The aim of this study is to examine post-cardiac surgery pain from the perspectives of patients, caregivers and nurses. A descriptive qualitative research design was used. The study was carried out in the cardiovascular surgery ward of a tertiary hospital in Türkiye between June and December 2022. The data-driven triangulation method was used in the research. The study sample consisted of eight patients who had undergone cardiac surgery in the tertiary hospital, eight family caregivers and nine nurses who provided care for these individuals. A 'semi-structured interview form' was used to collect data through face-to-face and in-depth interviews. The data were analysed using the thematic analysis method. The COREQ checklist was used for reporting the study. As a result of the interviews, six themes were elicited from the data. These themes were 'explaining pain', 'assessment of pain', 'responses to pain', 'effect of pain on activities of daily living', 'expectations in painful situations' and 'pain management'. This study revealed the differences between pain perceptions and coping processes of patients who experienced pain after cardiac surgery, their caregivers and nurses. Considering the experiences of patients, caregivers and nurses in pain management after cardiac surgery, applications that will ensure joint participation in care practices should be planned.

“My Mummy Has a Hole in Her Face”: Living with Facial Eye Disfigurement

People living with facial eye disfigurements (LwFED) are often shunned by a society that makes spontaneous judgements based on appearance. This article is a case study of the lived experience of Toni, a 27-year-old woman LwFED, the result of her treatment for ocular cancer. Semi-structured interviews facilitated the exploration of her experiences. We present the findings chronologically but interwoven with themes such as: being strong for others; responding to her partner’s abuse; dealing with strangers; and reinventing her sense of identity and supporting others. We identified institutional perspectives of work, hospital, and family within the prevailing UK that impacted Toni’s experiences of LwFED and argue that institutional perspectives need to be educated about the ordinary person’s daily grind of LwFED to address unrecognised bias and assumption. Only when identified and addressed can the reframing of social, institutional, organisational, and medical understandings and responses facilitate and support the lives of those LwFED.

“It Makes Him Feel Even Farther Away”: Disruptions in Communication Among Families Impacted by Incarceration During the COVID-19 Pandemic

The COVID-19 pandemic impacted people across the globe but left particular risks and restrictions for incarcerated people. Lockdowns and the suspension of in-person visitation in U.S. facilities drastically changed everyday life for incarcerated people and their families. Families on the outside were left with less contact with their incarcerated loved ones. This study explores access to communication during the COVID-19 pandemic from the perspectives of families with incarcerated loved ones in the United States. We conducted two rounds of interviews with family members across 20 states ( n = 59). Results of our thematic analysis reveal stressors encountered by families during the pandemic, including worry and frustration around uncertainty in communication, disconnected relationships due to visitation closure, and additional financial and emotional burdens. Interviewees noted the importance of social support in coping with these stressors. We discuss theoretical and policy implications followed by future directions.

'It gives me more freedom': Family perspectives on travelling with children on nocturnal ventilation.

Children with neuromuscular weakness or central hypoventilation often require nocturnal ventilation. Children with these conditions are living longer and the numbers of children affected are increasing. The challenges associated with managing ventilation at home have been documented; however, there has been limited investigation into accessing wider experiences such as travel. Air travel, in particular, may be considered challenging for children with these conditions because oxygen levels are lower in airplane cabins than at sea levels. We sought to understand experiences of and attitudes towards travel amongst families of children using nocturnal ventilation for neuromuscular weakness or central hypoventilation. Two semi-structured interviews were conducted amongst participants enrolled in a trial of a new pre-flight assessment of their tolerance of reduced oxygen levels during flight (known as a hypoxic challenge test). Children participating in the trial were aged 19 months to 18 years. Parents were interviewed and provided proxy views for younger children, and older children were encouraged to present their own views during these interviews. One interview was conducted immediately after the assessment, and a second 3 months later. Data were analysed utilising the framework approach to thematic analysis. Seventeen families participated in the first interview with 14 of these families completing the follow-up interview. Three further families participated in the follow-up interview only. Here, we report three themes relating to participant experience of travel and how this is impacted by their condition. The three themes and their sub-themes were (1) insight into children's lives: hospital attendances, gaining knowledge and confidence, and child as a person; (2) travelling with your child: planes, trains and automobiles, rules of air travel, and uncertainty; and (3) the meaning of travel: normalisation, connection to extended family, expanded experiences, and freedom and equality. This population of children and their families aspire to travel but face challenges from clinical and social barriers. It is essential that we further our understanding of the physiological, social and cultural aspects of their experience to facilitate their access to broadened life experiences.

Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity.

Care Coordination (CC) is a significant intervention to enhance family's capacity in caring for children with neurodevelopmental disability and medical complexity (NDD-MC). CC assists with integration of medical and behavioral care and services, partnerships with medical and community-based supports, and access to medical, behavioral, and educational supports and services. Although there is some consensus on the principles that characterize optimal CC for children with NDD-MC, challenges remain in measuring and quantifying the impacts of CC related to these principles. Two key challenges include: (1) identification of measures that capture CC impacts from the medical system, care provider, and family perspectives; and (2) recognition of the important community context outside of a hospital or clinical setting. This study used a multilevel model variant of the triangulation mixed methods design to assess the impact of a CC project implemented in Alberta, Canada, on family quality of life, resource use, and care integration at the broader environmental and household levels. At the broader environmental level, we used linked administrative data. At the household level we used quantitative pre-post survey datasets, and aggregate findings from qualitative interviews to measure group-level impacts and an embedded multiple-case design to draw comparisons, capture the nuances of children with NDD-MC and their families, and expand on factors driving the high variability in outcome measures. Three theoretical propositions formed the basis of the analytical strategy for our case study evidence to explore factors affecting the high variability in outcome measures. This study expanded on the factors used to measure the outcomes of CC and adds to our understanding of how CC as an intervention impacts resource use, quality of life, and care integration of children with NDD-MC and their families. Given the heterogeneous nature of this population, evaluation studies that account for the variable and multi-level impacts of CC interventions are critical to inform practice, implementation, and policy of CC for children with NDD-MC.

Why is Commercial Surrogacy Banned Worldwide? A Complete Review

Commercial surrogacy mainly occurs in underdeveloped nations, and when local women carry children for affluent foreigners, commercial surrogacy is a controversial issue in feminist literature. Surrogacy is a contentious topic, primarily when prominent celebrities have utilized it. Particular surrogate moms experience complications by assisted reproduction techniques; Ectopic pregnancy, ovarian hyperstimulation syndrome, and psychological stress are the primary ones. It benefits couples unable to conceive normally but may also be exploited for profit. In December 2018, the Indian Government approved surrogacy legislation that modified the previous regulations. Specifically, it outlaws commercial surrogacy and restricts the eligibility of Europeans to seek surrogacy in India. The companies that organized surrogacy for foreigners have suffered a severe hit. This law's passage was primarily motivated by the discriminatory practices of surrogacy providers. They often did not receive the money the expecting parents paid to the company, and their living conditions were poor. Commercial surrogacy is permitted in various nations, such as the United States of America, Russia, Poland, and many others. Surrogacy is banned in Saudi Arabia, Pakistan, Iceland, Italy, Serbia, Spain, Sweden, Switzerland, France, and Germany. In these countries, surrogacy is mainly banned due to religious beliefs, i:e, Islam does not allow this practice, which is unethical. It is unclear what the acceptable reimbursement for surrogacy is in other nations where any surrogacy is considered banned. Both commercial and altruistic surrogacy have unethical consequences, and several nations disagree and have banned it. These moral disadvantages are even worse by cross-border commercial surrogacy. Their many objections against commercial surrogacy are addressed, along with the justifications for why it is banned in many countries. Examples include the commercialization and exploitation of surrogates, reproductive capabilities, health risks, unfair marketing, a lack of legal protection for surrogate mothers, ethical and legal issues, and the issue of stateless children. Despite the possibility of commercialization and exploitation, we suggest that these issues are not exclusive to surrogacy and instead need to be seen from the larger perspective of an unequal civilization. Furthermore, some of these arguments lack an understanding of actual experiences or are based on metaphor. Surrogates need to be compensated well, and rules should be in place. Commercial surrogacy is a complicated topic that is impacted by various variables, such as high infertility treatment costs, the accessibility of international travel, and especially the economic fragility of Indian SMs and their families. There are issues surrounding the surrogate mother's decision making process, especially concerning gender disparities, power imbalances, and a lack of proper legal support for surrogate mothers. To fully comprehend commercial surrogacy, further study is required, mainly research considering the perspectives of Indian women and families participating in these arrangements.

The psychopathological evolution of “Behavior and Conduct Disorder in Childhood”: Deviant and criminal traits in preadolescence and adolescence. A review

Starting from the general concept of “Behavior and Conduct Disorder in Childhood”, the present review seeks to highlight the main predictive elements that, in preadolescent and adolescent age, can correlate with the symptomatological picture of distinctive disorders in deviant and criminal conduct. Early educational intervention, prevention in all its forms and the use of therapeutic corrective tools can encourage expected and expected behavioural improvement, especially in subjects who are still not adults and with a family and social environment that responds to corrective stimuli. Understanding such passages is functional from a strategic point of view, to prevent, educate, plan, intervene, and/or correct certain psychopathological inclinations, also from a socio-environmental, family, and personal perspective.

Securing direct stakeholder feedback to inform clinical research in serious mental illness: Results of a patient and family perspectives survey

Mental illness research routinely includes unfamiliar or potentially frightening procedures like lumbar puncture (LP), contributing to low enrollment and retention. Previous studies related to LP acceptance have focused on older individuals, and little information on participant preferences for educational materials is available. We developed an online survey assessing existing knowledge, comfort and concerns, and preferences for educational materials in the context of our clinical study on schizophrenia spectrum conditions (SSCs). We found that participants were generally knowledgeable and interested in engaging with clinical SSC research. Frequency of engagement with research publications differed significantly by participant groups and age. Comfort levels were consistently highest for study procedures other than LP, though surprisingly the average number of informational needs per procedure was not significantly different for LP compared to other procedures. Preferences for format and source of educational materials varied across participant groups and age. Our results suggest that younger individuals with an SSC diagnosis are likely to have limited exposure to information, and proactively providing accessible and accurate educational materials may improve positive perceptions of LP. Providing content in a range of formats and sources will ensure that participants and their support networks have access to their preferred resources.

Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives.

There is limited information regarding caregiver and provider perspectives on uncertainty across the continuum of the neonatal intensive care unit (NICU) experience. Open-ended semi-structured interviews were conducted with providers and English- and Spanish-speaking caregivers of infants with a history of admission to a quaternary safety-net NICU. Major themes were generated using inductive-deductive thematic analysis. Seventy-six individuals participated in the study: 47 caregivers and 29 providers. The median gestational age of the infants was 29 weeks and 85% were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm. Most providers were neonatologists (37%) and nurses (27%) and more than half had over ten years of experience. A conceptual model of caregiver uncertainty was developed and key domains included drivers of uncertainty and its impact, and factors influencing coping and adaptation. Our analysis found a positive association between caregiver information gathering, clinical continuity, support systems, maternal mental health supports, and witnessing a child's progress and the development of adjustment to chronic uncertainty. These results suggest key areas for intervention that can promote parental adaptation to the uncertainty inherent in the NICU experience.

Current Situation and Future Development of Education for Children in Ecological Migrant Areas in Ningxia

The issue of ecological migration has been concerned for a long time. As one of the first regions to implement ecological migration projects, Ningxia has a special multi-ethnic population, and its education problems cannot be ignored. From the perspective of schools, this paper analyses the current situation of exclusion and isolation of new immigrant children in schools and the lack of holistic education for children. From the perspective of families, it analyses the situation of parents of new immigrants having low expectations for their childrens education and the situation of educational differences due to different ethnic beliefs. The paper positively puts forward the ideas that teachers are expected to teach their students according to their abilities; school is ought to strengthen its infrastructure, obey the rules and regulations in the society and provide extensive training for teachers. Moreover, it is necessary to quicken the social integration of new immigrants and residents. It is hoped that with the implementation of these measures can accelerate the progress of friendly relations between indigenous people and new migrants and provide a good educational environment for children.

Medical Assistance in Dying for Mental Illness as a Sole Underlying Medical Condition and Its Relationship to Suicide: A Qualitative Lived Experience-Engaged Study: Aide Médicale à Mourir Pour Maladie Mentale Comme Seule Condition Médicale Sous-Jacente et Son Lien Avec le Suicide: Une Etude Qualitative Engagée Dans l'Expérience Vécue.

This lived experience-engaged study aims to understand patient and family perspectives on the relationship between suicidality and medical assistance in dying when the sole underlying medical condition is mental illness (MAiD MI-SUMC). Thirty individuals with mental illness (age M = 41.8 years, SD = 14.2) and 25 family members (age M = 47.5 years, SD = 16.0) participated in qualitative interviews examining perspectives on MAiD MI-SUMC and its relationship with suicide. Audio recordings were transcribed and analysed using reflexive thematic analysis. People with lived experience were engaged in the research process as team members. Four main themes were developed, which were consistent across individuals with mental illness and family members: (a) deciding to die is an individual choice to end the ongoing intolerable suffering of people with mental illness; (b) MAiD MI-SUMC is the same as suicide because the end result is death, although suicide can be more impulsive; (c) MAiD MI-SUMC is a humane, dignified, safe, nonstigmatized alternative to suicide; and (4) suicidality should be considered when MAiD MI-SUMC is requested, but suicidality's role is multifaceted given its diverse manifestations. For patient-oriented mental health policy and treatment, it is critical that the voices of people with lived experience be heard on the issue of MAiD MI-SUMC. Given the important intersections between MAiD MI-SUMC and suicidality and the context of suicide prevention, the role that suicidality should play in MAiD MI-SUMC is multifaceted. Future research and policy development are required to ensure that patient and family perspectives guide the development and implementation of MAiD MI-SUMC policy and practice.

Implementation of US Post-Acute Care Payment Reform and COVID-19 Policies: Examining Experiences of Health System Leaders, Staff, Patients, and Family Caregivers-A Protocol.

In fiscal year 2020, new national Medicare payment models were implemented in the two most common post-acute care settings (i.e., skilled nursing facilities (SNFs) and home health agencies (HHAs)), which were followed by the emergence of COVID-19. Given concerns about the unintended consequence of these events, this study protocol will examine how organizations responded to these policies and whether there were changes in SNF and HHA access, care delivery, and outcomes from the perspectives of leadership, staff, patients, and families. We will conduct a two-phase multiple case study guided by the Institute of Medicine's Model of Healthcare Systems. Phase I will include three cases for each setting and a maximum of fifty administrators per case. Phase II will include a subset of Phase I organizations, which are grouped into three setting-specific cases. Each Phase II case will include a maximum of four organizations. Semi-structured interviews will explore the perspectives of frontline staff, patients, and family caregivers (Phase II). Thematic analysis will be used to examine the impact of payment policy and COVID-19 on organizational operations, care delivery, and patient outcomes. The results of this study intend to develop evidence addressing concerns about the unintended consequences of the PAC payment policy during the COVID-19 pandemic.

Transgenerational value transmission in business-owning families: an indigenous African perspective

PurposeThis study aims to investigate the favourable conditions that influence transgenerational value transmission (TVT), value acceptance and value similarity between generations in indigenous African business-owning families.Design/methodology/approachThis study adopts a multiple case study design and draws on semi-structured face-to-face interviews to collect data from participants in seven indigenous Black business-owning families located in South Africa. The software ATLAS.ti was utilised to manage the data and reflexive thematic analysis was undertaken.FindingsThe analysis reveal four themes describing how transmission factors facilitate favourable conditions for successful TVT in IBSA business-owning families, namely, authoritarian parenting, a loving and connected family relational climate, the continuous reinforcement of autonomy during childhood development and family authenticity in the face of societies dominant values climate. Furthermore, value similarity is perceived to exist among the different family generations in the business-owning families.Originality/value This study is among the first to adopt the value acquisition model to empirically examine successful TVT and examine the extent of value similarity or dissimilarity, using the business-owning family as the unit of analysis. Novel contributions to family business literature and practices are proposing a model for TVT in an African context and studying relationships from a business-owning family perspective. The model for TVT could be used to socialise the NextGen members into value sets and behaviours that help business-owning families preserve their entrepreneurial legacy and family business longevity.

Subject and Family Perspectives from the Central Thalamic Deep Brain Stimulation Trial for Traumatic Brain Injury: Part II.

This is the second paper in a two-part series describing subject and family perspectives from the CENTURY-S (CENtral Thalamic Deep Brain Stimulation for the Treatment of Traumatic Brain InjURY-Safety) first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury (msTBI). To participate, subjects were independently assessed to formally establish decision-making capacity to provide voluntary informed consent. Here, we report on post-operative interviews conducted after a successful trial of thalamic stimulation. All five msTBI subjects met a pre-selected primary endpoint of at least a 10% improvement in completion time on Trail-Making-Test Part B, a marker of executive function. We describe narrative responses of subjects and family members, refracted against that success. Interviews following surgery and the stimulation trial revealed the challenge of adaptation to improvements in cognitive function and emotional regulation as well as altered (and restored) relationships and family dynamics. These improvements exposed barriers to social reintegration made relevant by recoveries once thought inconceivable. The study's success sparked concerns about post-trial access to implanted devices, financing of device maintenance, battery replacement, and on-going care. Most subjects and families identified the need for supportive counseling to adapt to the new trajectory of their lives.