Fathers in the Care of Children with Disabilities: An Exploratory Qualitative Study.
Ontology highlight
ABSTRACT:
SUBMITTER: Uribe-Morales BM
PROVIDER: S-EPMC8775232 | biostudies-literature | 2021 Dec
REPOSITORIES: biostudies-literature
Publications
Fathers in the Care of Children with Disabilities: An Exploratory Qualitative Study.
Uribe-Morales Brenda M BM Cantero-Garlito Pablo A PA Cipriano-Crespo Carmen C
Healthcare (Basel, Switzerland) 20211222 1
<h4>Objective</h4>to explore the perception and experience of fathers of children with disabilities in caring for their children; to know their role and how these tasks impact their daily life, health and physical, mental and/or emotional well-being.<h4>Methodology</h4>qualitative approach study with phenomenological design. The sample consisted of seven young fathers of underage children with various diagnoses. The data were collected through semi-structured interviews; the discourse analysis w ...[more]
Similar Datasets
Project description:Background: Being a parent of a child with a developmental disability (DD; e. g., cerebral palsy, autism) comes with great challenges and apprehensions. Mothers and fathers of children with DD are experiencing heightened levels of psychological distress, physical health problems, financial difficulties, social isolation, and struggles with respect to traditional parenting roles. In relation to the latter, the involvement of fathers in caregiving in today's society is increasing and is highlighted by its importance and positive contribution to the development of their children. However, fathers of children with DD report feeling excluded and marginalized by healthcare providers (HCPs) when arranging for and getting involved in healthcare services for their children. Currently, there is limited evidence as to what factors influence those experiences. We aimed to explore barriers to and facilitators of positive and empowering healthcare experiences, from the perspectives of fathers of children with DD and HCPs. Methods: A mixed-method approach, such as quantitative (survey) and qualitative (semi-structured interview) strategies, was used. Participants were fathers of children with DD and HCPs working in childhood disability. Data analysis consisted of using descriptive statistics and an inductive-thematic analysis of emergent themes. Results: Fathers (n = 7) and HCPs (n = 13, 6 disciplines) participated. The fathers indicated that while they were moderate to very much satisfied with their interactions with HCPs, they reported that HCPs were only sometimes attentive to them during interactions. Fathers also revealed that positive interactions with HCPs in relation to their children had multiple benefits. Several themes related to barriers and facilitators of optimal interactions and parent-professional relationships emerged. These included session factors (time, attention), personal factors (knowledge of the condition, child and healthcare system, acceptance vs. denial, previous experiences, culture, stereotypes, pre-existing beliefs, stress levels, working schedule), and family dynamics. The participants offered several insights into the different strategies that can be implemented to promote optimal interactions between fathers and HCPs. Conclusion: We identified several barriers, facilitators, and improvement strategies for optimal interactions and enhanced parent-professional relationships from the perspectives of fathers and HCPs. These can be integrated by existing clinical settings in efforts to enhance current clinical practices and improve child- and parent-related outcomes.
| S-EPMC9397890 | biostudies-literature
Project description:Social cognitive abilities - notably, Theory of Mind (ToM) and social information processing (SIP) - are key skills for the development of social competence and adjustment. By understanding affective and cognitive mental states and processing social information correctly, children will be able to enact prosocial behaviors, to interact with peers and adults adaptively, and to be socially included. As social adjustment and inclusion are major issues for children with intellectual disabilities (IDs), the present study aimed to explore their social cognitive profile by combining cluster analysis of both ToM and SIP competence, and to investigate the structure of relations between these skills in children with IDs. Seventy-eight elementary school children with non-specific IDs were recruited. They had a chronological age ranging from 4 years and 8 months to 12 years and 6 months and presented a preschool developmental age. Performance-based measures were administered to assess ToM and SIP abilities. Questionnaires were completed by the children's parents to evaluate the children's social competence and adjustment and their risk of developing externalizing or internalizing behaviors. Exploratory analysis highlighted strengths and weaknesses in the social cognitive profiles of these children with IDs. It also emphasized that the understanding of affective and cognitive mental states was used differently when facing appropriate vs. inappropriate social behaviors. The present study leads to a better understanding of the socio-emotional profile of children with IDs and offers some suggestions on how to implement effective interventions.
| S-EPMC7431697 | biostudies-literature
Project description:BackgroundPerinatal care nurses are well positioned to provide the education and support new fathers need to navigate the transition to fatherhood and to encourage positive father involvement from the earliest hours of a child's life. To effectively serve fathers in perinatal settings, it is important to understand the attitudes, beliefs, and behaviors of healthcare providers that may encourage and engage them, or alternatively alienate and discourage them.MethodsThis qualitative study involved structured interviews with ten NICU and postpartum nurses from hospitals in two large Texas cities. The interview protocol was designed to elicit descriptive information about nurses' attitudes and beliefs, sense of efficacy and intention for working with fathers, as well as their father-directed behaviors. Nurses were recruited for the study using a purposive sampling approach. Interviews were conducted by telephone and lasted approximately 25 to 35 min. Data were analyzed using a qualitative descriptive approach.ResultsOverall, study participants held very positive subjective attitudes toward fathers and father involvement. Nevertheless, many of the nurses signaled normative beliefs based on race/ethnicity, gender, and culture that may moderate their intention to engage with fathers. Participants also indicated that their education as well as the culture of perinatal healthcare are focused almost entirely on the mother-baby dyad. In line with this focus on mothers, participants comments reflected a normative belief that fathers are secondary caregivers to their newborns, there to help when the mother is unavailable.ConclusionsNurse attitudes and practices that place mothers in the role of primary caregiver may be interpreted by fathers as excluding or disregarding them. Further research is needed to validate the results of this small-scale study, and to assess whether and how provider attitudes impact their practices in educating and engaging fathers in newborn care.
| S-EPMC7903796 | biostudies-literature
Project description:BackgroundExploring the experiences and views of men who had attended the birth of their children is very vital, especially in a setting where traditionally only women accord women support during labour and childbirth. The insights drawn from the male partners' views and experiences could enhance the current woman-centred midwifery model that encompasses the needs of the baby, the woman's family and other people important to the woman, as defined and negotiated by the woman herself. This paper explored the views and experiences of men who attended the birth of their children from two private hospitals in an urban setting in southern Malawi.MethodsThis study used an exploratory descriptive qualitative approach. The data were collected through in-depth interviews from 20 men from Blantyre, a city in the southern part of Malawi, who consented to participate in the study. These men attended the birth of their children at Blantyre Adventist and Mlambe Mission Hospitals within the past two years prior to data collection in August 2010. A semi-structure interview guide was used to collect data. Qualitative content analysis was used to analyse the data set.ResultsFour themes were identified to explain the experiences and views of men about attending childbirth. The themes were motivation; positive experiences; negative experiences; reflection and resolutions. The negative experiences had four sub-themes namely shame and embarrassment, helplessness and unprepared, health care provider--male partner tension, and exclusion from decision-making process.ConclusionsThe findings showed that with proper motivational information, enabling environment, positive midwives' attitude and spouse willingness, it is possible to involve male partners during childbirth in Malawi. Midwives, women and male peers are vital in the promotion of male involvement during childbirth. In addition, midwives have a duty to ensure that men are well prepared for the labour and childbirth processes for the experience to be a positive one.
| S-EPMC3520855 | biostudies-literature
Project description:ObjectiveTo investigate the influence of traditional culture on health, disability, and health care services among American Indian and Alaska Native (AI/AN) children and youth with disabilities.DesignExploratory descriptive qualitative analysis.SettingTertiary children's hospital.ParticipantsA purposively sampled group (N=17) of AI/AN youth (n=4) with disability lasting at least 6 months age 8-24 years old and parents (n=13) of AI/AN children with disability lasting at least 6 months age 6 months to 17 years old.InterventionsNot applicable.Main outcome measuresParticipant responses to semistructured interview questions regarding health beliefs, daily activities, participation in cultural activities, and experiences receiving or having their child receive health care and rehabilitation services.ResultsThree themes were identified: (1) participation in cultural activities is important for health as an AI/AN person; (2) experiences participating in cultural activities with functional differences; and (3) lack of recognition of the culturally related functional needs of AI/AN children with disabilities by rehabilitation providers. Children participated in cultural activities primarily through attendance at community-wide events. Barriers to participation in cultural activities included environmental barriers and adaptive mobility devices ill-suited to rough terrain. Participants perceived addressing functional needs related to culture, and cultural activities was not an expected part of rehabilitation services.ConclusionsAI/AN children with disabilities experience barriers to participation in cultural activities, making it hard for them to achieve their definition of ideal health. Rehabilitation services have not identified or addressed these unmet culturally related functional needs.
| S-EPMC6584540 | biostudies-literature
Project description:ObjectivesTo develop an understanding of men's experiences of first-time fatherhood, their mental health and wellbeing needs.DesignA qualitative study using semi-structured interviews. Data were analysed using framework analysis.SettingTwo large National Health Service integrated care trusts covering four London (UK) local authority boroughs.ParticipantsFirst-time fathers with children under 12 months of age were included. Maximum variation sampling was used, with 21 fathers recruited. Ten of these men described their ethnic background as Indian, seven as White British, one as Spanish, one as Black African, one as Black Caribbean and one as Pakistani. Participants' ages ranged from 20 to over 60 years; completion of full-time education ranged from high school certificate to doctorate level; and annual income ranged from £15 000 to over £61 000. Non-English speaking fathers, those experiencing bereavement following neonatal death, stillbirth, pregnancy loss, sudden infant death, and fathers with existing severe mental illnesses were excluded.ResultsNine major categories were identified: 'preparation for fatherhood', 'rollercoaster of feelings', 'new identity', 'challenges and impact', 'changed relationship: we're in a different place', 'coping and support', 'health professionals and services: experience, provision and support', 'barriers to accessing support', and 'men's perceived needs: what fathers want'. Resident (residing with their partner and baby) and non-resident fathers in this study highlighted broadly similar needs, as did fathers for whom English was their first language and those for whom it was not. A key finding of this study relates to men's own perceived needs and how they would like to be supported during the perinatal period, contributing to the current evidence.ConclusionsThis study provides insight into first-time fathers' experiences during their transition to fatherhood, with important implications for healthcare policy makers, service providers and professionals for how perinatal and early years services are planned and provided for both new parents.
| S-EPMC6747673 | biostudies-literature
Project description:We aimed to explore the engagement of fathers in a community-based group intervention (Juntos) for children with congenital Zika syndrome (CZS) and their caregivers in Brazil. Six Juntos groups were facilitated from August 2017 to May 2018. We conducted a qualitative study to evaluate the feasibility and acceptability of the intervention for fathers of children with CZS. Methods included participant observation, focus group discussions, and semi-structured interviews of fathers with a child enrolled in the program. Data collected were transcribed, coded and thematically analyzed to explore father preference for, and beliefs about the intervention and to assess potential barriers and enablers to their involvement. Forty-nine families (61 participants) enrolled, of whom 20% (12/61) were fathers. Seven (58%) fathers attended more than 7 out of 10 sessions. The content of Juntos was found to be acceptable to those fathers who attended. Participation in the group offered fathers the opportunity to share experiences of caring for their child and demonstrate their importance as care agents. Work commitments, and the view of mothers as primary caregivers were barriers to engagement of fathers. Facilitators to engagement included a presentation of clear objectives for fathers' involvement and the opportunity to learn a practical skill related to caring for their child. A better understanding of the perspectives of fathers is crucial to help increase their involvement in parenting interventions.
| S-EPMC6843372 | biostudies-literature
Project description:BackgroundEvolving societal trends are resulting in fathers having an increasing influence on the health-related behaviors that children develop. Research shows that most fathers are committed to their role and when equipped with knowledge, can have a positive impact on their child's health. However, parenting resources typically target mothers, with fathers being excluded. While evolving mobile phone technology provides an efficient means for delivering parenting resources, many fathers find that mobile health (mHealth) technology does not provide material they can engage with.ObjectiveThis study aimed to explore how to make parenting apps more engaging and useful for fathers using an existing parenting mHealth resource, the My Baby Now app, as a case study.MethodsA total of 14 purposefully selected, Australian fathers of 7 months to 5-year-old children took part in a qualitative study, comprising either focus groups or interviews. Recorded focus groups and interviews were transcribed verbatim, then coded using a combination of deductive and inductive methods. Reflexive thematic analysis was undertaken to identify patterns and themes.ResultsCurrent parenting apps provide parenting information that can be unappealing for fathers. To improve paternal engagement with mHealth resources, fathers highlighted the need for father specific information, with an increase in positive imagery and positive descriptions of fathers in their parenting role. There should be father-exclusive domains such as forums, and also push notifications to provide positive reinforcement and encouragement for fathers.ConclusionsmHealth has the capacity to deliver information to fathers when needed. This reduces the risk of paternal frustration and disengagement from parenting. Further benefit will be gained by research to understand possible differences in mHealth app usage by fathers of differing socioeconomic position, cultural backgrounds, and family status, such as single fathers and same-sex couples.
| S-EPMC11890138 | biostudies-literature
Project description:BackgroundThe participation of children with disabilities in leisure activities is a key determinant of their physical and mental health. The COVID-19 pandemic has limited participation in leisure activities for all children, particularly those with disabilities. As a result, children with disabilities may be less active while feeling more isolated and stressed. Web-based communities and activities have become increasingly important. Understanding how web-based activities include or exclude children with disabilities can contribute to the development of inclusive communities that may support participation after the pandemic.ObjectiveThis study aimed to identify factors that may facilitate or prevent the participation of children with disabilities in web-based leisure activities.MethodsWe adopted a qualitative descriptive interpretative methodology and conducted interviews with 2 groups of participants: service providers offering inclusive web-based leisure activities and parents of children with disabilities who have engaged in web-based leisure activities during the COVID-19 pandemic. A semistructured interview format was created based on the Theoretical Domains Framework. The questions focused on the description of the web-based activities offered by the service provider (eg, age range, frequency, cost, target population, and type of activity offered) and any adaptations to make the web-based activity accessible to children and youth with disabilities, and their perceptions and beliefs about what supported or deterred participation in the activities.ResultsA total of 17 participants described their experiences in participating in and creating web-based leisure programs and the factors preventing or facilitating children's participation in web-based activities. Environment and context factors included accommodations, the format of activities and the web-based setting, stakeholder involvement, and materials and resources available. Activities that had flexible schedules, both recorded and live options for joining, and that provided clear instructions and information were perceived as more accessible. Beliefs involved the characteristics of the child and the family environment, as well as the characteristics of the organizations providing the activity. Activity facilitators who were familiar with the web-based environment and knew the specific characteristics of the child facilitated their participation. Engagement in community champions and respect for children's individual preferences were perceived as positive. Access to technology, funding, and caregivers' ability to facilitate child engagement are crucial factors that must be considered when offering web-based programs.ConclusionsWeb-based environments offer an accessible and safe option for leisure participation when public health conditions prevent children with disabilities from participating in in-person activities. However, to make web-based activities accessible to children with a variety of disabilities, there needs to be a clear plan toward universal web-based accessibility that accounts for individual needs and collective approaches to web-based leisure. Future work should consider developing and testing guidelines for web-based accessibility, equity, public policy, and programming considerations in offering these activities for all children.
| S-EPMC10162483 | biostudies-literature
Project description:BACKGROUND:Caring for a child with intellectual disabilities can be a very rewarding but demanding experience. Research in this area has primarily focused on mothers, with relatively little attention given to the mental health of fathers. AIMS:The purpose of this review was to summarise the evidence related to the mental health of fathers compared with mothers, and with fathers in the general population. METHOD:A meta-analysis was undertaken of all studies published by 1 July 2018 in Medline, PsycINFO, CINAHL and EMBASE, using terms on intellectual disabilities, mental health and father carers. Papers were selected based on pre-defined inclusion and exclusion criteria. RESULTS:Of 5544 results, 20 studies met the inclusion criteria and 12 had appropriate data for meta-analysis. For comparisons of fathers with mothers, mothers were significantly more likely to have poor general mental health and well-being (standardised mean difference (SMD) -0.38, 95% CI -0.56 to -0.20), as well as higher levels of depression (SMD, -0.46; 95% CI -0.68 to -0.24), stress (SMD, -0.32; 95% CI -0.46 to -0.19) and anxiety (SMD, -0.30; 95% CI -0.50 to -0.10). CONCLUSIONS:There is a significant difference between the mental health of father and mother carers, with fathers less likely to exhibit poor mental health. However, this is based on a small number of studies. More data is needed to determine whether the general mental health and anxiety of father carers of a child with intellectual disabilities differs from fathers in the general population.
| S-EPMC6854361 | biostudies-literature