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The Many Roles of the Rock: A Qualitative Inquiry into the Roles and Responsibilities of Fathers of Children with Brain Tumors.

ABSTRACT: A pediatric brain tumor diagnosis impacts an entire family unit, from diagnosis through curative treatment, and into survivorship or bereavement. Paternal caregiver experience has been significantly underexplored in pediatric neuro-oncology research as compared to maternal experience. This case series study explores the paternal roles, responsibilities, strengths, challenges, personal growth, and support needs of fathers of children with brain tumors receiving new palliative care consultations. In the study setting, a neuro-oncology diagnosis results in an automatic referral to the palliative care team, and thus, a convenience sampling model was employed based on consecutive palliative care consults for new childhood brain tumor diagnoses. In this study, four fathers of pediatric brain tumor patients receiving palliative care consultations responded to eight open-ended questions. Individual, voice-recorded interviews were transcribed for semantic content qualitative analysis. Analysis followed Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Participants completed quantitative surveys of their information preferences and support needs. Participants defined their father role as: being a team parent, an adaptable father, supporter, provider, a present father, and protector. Role conflict due to paternal responsibilities were recognized, such as the absence from the hospital to provide financial security for the family, and yet a desire to be physically present for the child. Fathers prioritized their knowledge needs about their child's diagnosis, prognosis, and treatment above emotional needs. Fathers shared experiences of their personal growth through their child's brain tumor diagnosis and advised on preferred support formats to include both verbal and written information. Understanding how paternal caregivers of children with cancer define their roles and goals has potential to improve the care and communication delivered to families of pediatric neuro-oncology patients.

SUBMITTER: Robinson JE

PROVIDER: S-EPMC6826713 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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The Many Roles of the Rock: A Qualitative Inquiry into the Roles and Responsibilities of Fathers of Children with Brain Tumors.

Robinson Jacob E JE Huskey David D Schwartz Jonathan J Weaver Meaghann S MS

Children (Basel, Switzerland) 20191011 10

A pediatric brain tumor diagnosis impacts an entire family unit, from diagnosis through curative treatment, and into survivorship or bereavement. Paternal caregiver experience has been significantly underexplored in pediatric neuro-oncology research as compared to maternal experience. This case series study explores the paternal roles, responsibilities, strengths, challenges, personal growth, and support needs of fathers of children with brain tumors receiving new palliative care consultations. ...[more]

PMID: 31614522

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Project description:ObjectivesFathers play an important role in household decision-making processes and child health development. Nevertheless, they are under-represented in child health research, especially in low-income settings. Little is known about what roles fathers play in the care-seeking processes or how they interact with the health system when their child is sick. This study aimed to understand Ethiopian fathers' roles and responsibilities in caring for their children when they are or become ill.DesignQualitative study using semistructured interviews with fathers.SettingThis study was conducted in three rural districts of the Southern Nations, Nationalities and People's Region of Ethiopia.ParticipantsTwenty-four fathers who had at least one child between 2 and 59 months who visited a health extension worker with fever.ResultsThe overarching theme of this study was 'changing perceptions of paternal responsibilities during children's ill health'. It constituted three subthemes, namely, 'fathers' burden of earning money for care', 'fatherhood entails advocating children's healthcare needs' and 'investing in children's health can benefit the family in the future'. Fathers described that they were the ones mainly responsible for the financial arrangement of care and that this financial responsibility can involve stress when resources are scarce. Fathers knew what health services were available and accessible to them and were involved in different ways in the care seeking of the child. Changes in the importance ascribed to child health were expressed by fathers who described being more alert to children's ill-health.ConclusionFathers play various roles in the care-seeking process during children's illness episodes. This included, for instance, arranging resources to seek care, (co)-deciding where to seek care as well as accompanying the child to the health facility. The inability to organise necessary resources for care can lead to involuntary delays in care seeking for the child. This demonstrates the importance of including fathers in future interventions on maternal and child health.

Project description:BackgroundThe importance of engaging men in maternal and child health programs is well recognised internationally. In Papua New Guinea (PNG), men's involvement in maternal and child health services remains limited and barriers and enablers to involving fathers in antenatal care have not been well studied. The purpose of this paper is to explore attitudes to expectant fathers participating in antenatal care, and to identify barriers and enablers to men's participation in antenatal care with their pregnant partner in PNG.MethodsTwenty-eight focus group discussions were conducted with purposively selected pregnant women, expectant fathers, older men and older women across four provinces of PNG. Fourteen key informant interviews were also conducted with health workers. Qualitative data generated were analysed thematically.ResultsWhile some men accompany their pregnant partners to the antenatal clinic and wait outside, very few men participate in antenatal consultations. Factors supporting fathers' participation in antenatal consultations included feelings of shared responsibility for the unborn child, concern for the mother's or baby's health, the child being a first child, friendly health workers, and male health workers. Sociocultural norms and taboos were the most significant barrier to fathers' participation in antenatal care, contributing to men feeling ashamed or embarrassed to attend clinic with their partner. Other barriers to men's participation included fear of HIV or sexually transmitted infection testing, lack of separate waiting spaces for men, rude treatment by health workers, and being in a polygamous relationship. Building community awareness of the benefits of fathers participating in maternal and child health service, inviting fathers to attend antenatal care if their pregnant partner would like them to, and ensuring clinic spaces and staff are welcoming to men were strategies suggested for increasing fathers' participation in antenatal care.ConclusionThis study identified significant sociocultural and health service barriers to expectant fathers' participation in antenatal care in PNG. Our findings highlight the need to address these barriers - through health staff training and support, changes to health facility layout and community awareness raising - so that couples in PNG can access the benefits of men's participation in antenatal care.

Project description:BackgroundThe number of technology-dependent children (TDC) is increasing in South Korea, but available healthcare services after their discharge are poor. This study aimed to examine how TDC and caregivers live at home and identify their difficulties and needs regarding home care with few services to support them.MethodsThis cross-sectional study was conducted in a tertiary hospital for children in South Korea. A self-reported questionnaire was completed by primary caregivers of TDC who were younger than 19 years and had been dependent on medical devices for more than 3 months. Technologies included home mechanical ventilation, oxygen supplementation, suction equipment, enteral feeding tube, and home total parenteral nutrition. Patterns of healthcare use and home care of TDC and caregivers' perception toward child were assessed.ResultsA total of 74 primary caregivers of TDC completed a self-reported questionnaire. About 60% children were aged under 5 years. There were 31.1% children who required both respiratory and nutritional support. On average, caregivers took care of a child for 14.4 (±6.1) hours, slept for 5.6 (±1.6) hours, and spent 2.4 h per day on personal activities. Children used hospital services for 41.3 (±45.6) days in 6 months, and most (78.1%) were transported through private car/ambulance. Participants (75.6%) reported taking more than an hour to get to the hospital. More than 80% of caregivers responded that child care is physically very burdensome. The only statistically significant relationships was between economic status and financial burden (p = 0.026).ConclusionsCaregivers of TDC reported having significant time pressure regarding childcare-related tasks, insufficient time for personal activities, and inefficient hospital use because of inadequate medical services to support them in South Korea. Thus, it is necessary to support caregivers and develop a home care model based on current medical environment.

Project description:BackgroundThe internal medicine (IM) subinternship (also referred to as acting internship) plays a crucial part in preparing medical students for residency. The roles, responsibilities, and support provided to subinternship directors have not been described.ObjectiveWe sought to describe the current role of IM subinternship directors with respect to their responsibilities, salary support, and reporting structure.DesignNationally representative, annually recurring thematic survey of IM core clerkship directors with membership in an academic professional association as of September 2017.ParticipantsA total of 129 core clinical medicine clerkship directors at Liaison Committee on Medical Education fully accredited U.S./U.S.-territory-based medical schools.Main measuresResponsibilities, salary support, and reporting structure of subinternship directors.Key resultsThe survey response rate was 83.0% (107/129 medical schools). Fifty-one percent (54/107) of respondents reported overseeing both core clerkship inpatient experiences and/or one or more subinternships. For oversight, 49.1% (28/53) of subinternship directors also reported that they were the clerkship director, 26.4% (14/53) that another faculty member directed all medicine subinternships, and 18.9% (10/53) that each subinternship had its own director. The most frequently reported responsibilities for the subinternship directors were administration, including scheduling, and logistics of student schedules (83.0%, 44/53), course evaluation (81.1%, 43/53), and setting grades 79.2% (42/53). The modal response for estimated FTE per course was 10-20% FTE, with 33.3% (16/48) reporting this level of support and 29.2% (14/54) reporting no FTE support.ConclusionsThe role of the IM subinternship director has become increasingly complex. Since the IM subinternship is critical to preparing students for residency, IM subinternship directors require standard expectations and adequate support. Future studies are needed to determine the appropriate level of support for subinternship directors and to define essential roles and responsibilities.

Project description:BackgroundProperly implemented evidence-based clinical and public health guidelines can improve patient outcomes. WHO has been a major contributor to guideline development, publishing more than 250 guidelines on various topics since 2008. However, well-developed guidelines can only be effective if they are adequately and appropriately implemented. Herein, we aimed to explore whether and how WHO guidelines are implemented in local contexts to inform the success of future guideline implementation.MethodsSeventeen interviews were carried out between March 2018 and December 2018 with WHO guideline developers, headquarter staff, and regional and country office staff. Participants were purposely sampled from a variety of WHO guidelines and snowball sampling was used to identify regional and country office staff. The deidentified transcripts were analysed through three phases of coding, using grounded theory as the analytic approach.ResultsWHO guidelines played a variety of roles in the work of WHO at all levels. WHO officers and local government officials used WHO guidelines to influence health policy. We categorised the uses of guidelines as (1) directly changing policy, (2) justifying policy change, (3) engaging stakeholders, (4) being guarantors of legitimacy, (5) being advocacy tools, and (6) intertwining with WHO's various roles. Participants refuted the perception of the guidelines as mere lists of technical recommendations that needed to be implemented in different contexts. We found that the existence, quality and credibility, rather than the content of the guidelines, are the keys to health policy change initiatives in different local contexts.ConclusionsUsed as a guarantor of legitimacy by policy-makers, WHO guidelines can be better positioned to influence health policy and practice change. Understanding the various roles of guidelines can help WHO developers package guidelines to optimise their effective implementation.EthicsThis project was conducted with ethics approval from The University of Sydney (Project number: 2017/723) and WHO (Protocol ID: 00001).

Project description:Exploring 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.This 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.Four 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.The 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.

Dataset Information

The Many Roles of the Rock: A Qualitative Inquiry into the Roles and Responsibilities of Fathers of Children with Brain Tumors.

Publications

The Many Roles of the Rock: A Qualitative Inquiry into the Roles and Responsibilities of Fathers of Children with Brain Tumors.

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