(Unpacking) father involvement in the context of childhood neurodisability research: a scoping review.

BACKGROUND: In the past thirty years, theoretical and empirical scholarship on father involvement has emerged and firmly established itself. Efforts to define, measure, and explore outcomes related to father involvement in the context of childhood neurodisability are evident but less well established. The purpose of this study was to systematically map empirical studies on father involvement in the context of childhood neurodisability in order to delineate the current state of research and to highlight profitable directions for future research. METHODS: A rigorous scoping review method was used to select and analyze empirical studies published between the years 1988 and 2016 in order to systematically map research findings about fathers' affective, behavioral, and cognitive involvement. RESULTS: Fifty-four (n = 54) studies (quantitative n = 47 and qualitative n = 7) met inclusion criteria associated with three levels of review. Four main trends emerged: (a) paternal "stress" is a main concept of interest; (b) comparison of mothers and fathers on affective and cognitive involvement; (c) lack of a focus on fathers' behavioral involvement, and (d) the absence of research designs that allow for examination of fathers' unique perspectives. CONCLUSIONS: Fathers are generally underrepresented in research in the context of childhood neurodisability. While there is a lack of depth in this area of research, granular analyses revealed important and unique differences about fathers' parenting experiences. Recommendations for research and practice are provided. Implications for rehabilitation Fathers are underrepresented in the parenting in childhood neurodisability literature. Fathers who report feeling competent in parenting and connected to their child also report less parenting distress and more satisfaction in their couple relationship and family environment. Rehabilitation and allied health professionals should include fathers in parenting/family assessments. Manifestation of distress may differ among family members. Rehabilitation and allied health professionals should offer individualized care that is attuned to the needs of all family members.

The Coconstruction of Couples' Roles in Parenting Children With a Chronic Health Condition.

In this study we explored the ways that mothers and fathers of children who have a chronic health condition coconstructed their parenting roles. We wanted to move beyond the standard focus on individual parenting behaviors and use a grounded theory approach to better capture the dyadic and interpersonal gestalt of how parents worked out their roles. We explored multiple factors that influenced their decision making and the unique models that each couple developed. We held conjoint qualitative interviews with 20 couples from the Toronto area, as well as follow-up interviews with individual partners in five of these couples. Our findings introduce several concepts (such as role negotiation, complementarity and symmetry of roles, and "good enough" role performance) that form an explanatory model. A key finding is the diversity of ways in which couples adapted to the parenting challenges they faced. Implications in conceptual, clinical, and research areas are presented.

Evaluation of an online peer support network for fathers of a child with a brain tumor.

This study explored impacts of an online support network for fathers of a child with a brain tumor. Evaluation comprised pre/post-intervention questionnaires, content analysis of online network postings, and post-intervention qualitative interviews. Findings suggest that this intervention was beneficial to fathers. Positive effects on paternal coping were demonstrated, as were opportunities to grapple with difficult issues related to having a child with a brain tumor. Fathers recommended a combined resource of online and face-to-support, including the development of a support network with a larger participant base. Implications for practice are examined.

Quality of abstracts in the context of a systematic review on parenting of children with chronic health conditions and disabilities.

In this study the authors address the quality of abstracts reviewed during a systematic review. Their objective was to describe the proportion of abstracts that could not be coded and to explore factors associated with that outcome. Using an exploratory design, a database of titles uploaded for analysis was examined for clarity, type and year of publication, and abstract format. Of the 1851 references examined, 481 (26%) were coded as unclear. The inter-rater reliability Kappa score was 0.777. These abstracts were more likely to have been published prior to 2002 and did not use a structured format. Abstracts are an important tool in the systematic review process. Structured abstracts can reduce the time and costs associated with conducting a systematic review.

Family as a social determinant of health: implications for governments and institutions to promote the health and well-being of families.

A growing appreciation of the powerful impact of the social determinants of health, particularly the toxic effect of poverty on health, is driving the need for a re-evaluation of the role of governments and institutions such as hospitals in the lives of children and families. The well-being of families is the cornerstone on which society rests; yet evidence is growing that families are facing significant challenges beyond their control that adversely impact their ability to perform their essential role. With evidence of a growing divide in society--an expanding gap between the rich and the poor (Novak 2007)--contributing to a polarization of health and social outcomes along this continuum, there is an urgent need for revisioning priorities for health and social policies. Bold new ideas and leadership are needed to plan a future that encompasses social justice as a key value and operating assumption.

An innovative child CBT training model for community mental health practitioners in Ontario.

OBJECTIVE: Cognitive behavior therapy (CBT) for children has been shown efficacious, but community access to it is often limited by the lack of trained therapists. This study evaluated a child, CBT-focused, 20-session weekly group supervision seminar with a didactic component which was provided to community mental health practitioners by experienced CBT therapists from an academic center. METHODS: Twenty-two practitioners from four community mental health agencies completed the training in four groups (one for each agency); one group was trained by videoconference. The authors assessed outcomes immediately after the training and at 6-month follow-up using a mixed-method design including quantitative and qualitative methods to ensure a comprehensive evaluation. RESULTS: Participants' knowledge on a multiple-choice test of child CBT increased with training, as did their self-reported confidence using CBT and desire to do further child CBT. Therapist age and use of an intake diagnostic screen related to positive outcomes, and participants advocated for more structured training. CONCLUSION: Child CBT can be successfully taught to community practitioners using this training model, but refinement based on participant feedback and further studies that include direct observation of CBT skills are needed.

Experiences and resistance strategies utilized by fathers of children with cancer.

This study examines the experiences of fathers of children diagnosed with cancer. In this grounded theory study, participating fathers were qualitatively interviewed using a theoretical sampling approach. Results indicate fathers to be profoundly affected by their child's condition of cancer. Fathers' experiences include isolation and heightened sadness and uncertainty. Paternal roles comprise providing family support, sufficient resources, and seeking to maintain family stabilization. Post-diagnosis lived experience is described to hold new meaning as fathers reconcile the presence of childhood cancer within the life of their child and family. Strategies of resistance are demonstrated as fathers combat the devastating impacts of cancer through a commitment to family integration, healthy personal lifestyle and attitudes, support seeking, spirituality, and reframing of priorities. An emerging model is presented, as are implications for practice and recommendations.

Perspectives of mothers with substance use problems on father involvement.

BACKGROUND: A number of complex factors contribute to pregnant and parenting women's alcohol and substance use. To date, little research has focused on the implications, meaning and experiences of father involvement on mothers with substance use problems. OBJECTIVE: The current study explores the experiences of mothers with substance use problems with respect to the role, impact and meaning of father involvement. METHODS: This study conducted two focus groups utilizing a phenomenological approach. Mothers receiving clinical services at a comprehensive, community based program serving pregnant and parenting women with substance use problems were recruited to participate in this research. RESULTS: The meaning of father involvement among this group of women centered on four dimensions: emotional support, financial contributions to the family, amount and quality of time spent with the children and the family, and was dependent upon the particular expectations of the mother involved. Barriers and influences of father involvement were identified. The nature of father involvement had negative and positive impacts on participants. DISCUSSION: Maternal use of alcohol is a complex issue, one factor often ignored in father involvement. For mothers with substance use problems father involvement has a number of implications, both positive and negative.

Perceptions of online support for hospitalized children and adolescents.

This study identifies perceived outcomes following hospitalized children's participation in a pediatric online support network. Nineteen participants were interviewed, including child and adolescent patients who had used the network while in hospital, their parent/family caregiver, and a familiar health care provider. This triadic sampling approach provided a range of stakeholder perceptions. Results convey a wide spectrum of benefits and challenges in accessing and utilizing an online support network for hospitalized children. Participation in the network was identified as a means of fostering pediatric patient enjoyment, education, connection with peers, and coping. Information, social connection and distraction served as catalysts fostering positive outcomes for children. Identified barriers to network participation included inaccessibility and limited availability of computers, issues with technology, and discomfort with online interaction. Findings advance understanding of online networks as supportive resources for seriously ill children and their families.

Experiences and implications of social workers practicing in a pediatric hospital environment affected by SARS.

This phenomenological study's purpose was threefold: to detail the experiences of social workers practicing in a hospital environment affected by severe acute respiratory syndrome (SARS), to describe essential themes and structures of social work practices within this crisis environment, and to explore recommendations for better preparedness to meet similar crises in the future. The sudden onset of SARS in hospital settings created an immediate necessity to study this phenomenon as hospitals and health care professionals struggle to adapt to this new epidemic environment. This study is the first using qualitative research to investigate the unique perspective of social workers in an epidemic environment. The results reflect the social workers' subjective experience of their interventions with patients and families and indicate that a number of professional tenets, such as advocacy, family-centered approach, knowledge of systems, open communication, and ethics effectively supported social work practice in a crisis environment.

Evidence-based practice in an age of relativism: toward a model for practice.

Evidence-based practice (EBP) is considered a hallmark of excellence in clinical practice. However, many social workers are uncertain about how to implement this approach to practice. EBP involves integrating clinical expertise and values with the best available evidence from systematic research while simultaneously considering the client's values and expectations--all within the parameters of the agency mandate and any legislative or environmental considerations. This article explores the feasibility of EBP and attempts to steer a course between those who advocate an EBP model that may appear unachievable to many clinicians and those who dismiss it outright on philosophical grounds. Five areas that affect the feasibility of EBP are explored: misconceptions about EBP, confusion about philosophical issues, questions about the quality of evidence needed to support EBP, substantive knowledge domains required for practice, and issues related to knowledge transfer and translation. An important theme of this analysis is the central role of clinical judgment in all aspects of EBP.

Fathers' experience of parenting a child with juvenile rheumatoid arthritis.

The author examined the experience of fathers who have a child with juvenile rheumatoid arthritis (JRA). He used grounded theory methodology, in which 22 fathers participated in semistructured interviews, and developed a substantive theory of fathers' experience that addresses the impact of their child's JRA, their adaptational responses, and the meanings they associated with their experiences. Fathers were profoundly affected, perceived their child's condition as a catalyst for meaningful involvement, experienced many emotions, and sought to adopt a positive approach to making sense of their child's condition. Fathers' efforts to be strong for others resulted in an overreliance on self-support strategies, particularly during periods of high stress. Given the nature of fathers' experience and the extent of their involvement, greater attention by health care practitioners to fathers' adaptation is indicated.

Children in need of Pharmacare: medication funding requests at the Toronto Hospital for Sick Children.

OBJECTIVES: Although a national Pharmacare program ensuring access to and affordability of needed medications has repeatedly been cited as a priority to policymakers, 20% of families remain either uninsured or under-insured. The Hospital for Sick Children's Patient Amenities Fund (PAF) covers out-of-pocket medication expenses for inpatient and outpatient children. The research objectives were to 1) examine family demographics and socio-economic status (SES), the types of medications requested and government program process issues of PAF applicants in 1998 and 1999, and 2) describe trends in PAF requests from 1998 to 2000. METHODS: Data were extracted retrospectively from fund requests, charts and social work and discharge planning reports. Descriptive statistics were used to summarize the data and to examine time trends. RESULTS: Eighty-six applicants submitted 112 requests from 1998-1999. Most were for children with cancer, neurological disorders and transplant patients. Medication expenditures were 22,408 dollars in 1999, a 39% increase over 1998. Most requests came from two-parent nuclear families where one or both parents were employed. High deductibles, waiting time, application form complexity and request denials were cited as problems encountered with government drug plans. DISCUSSION: The findings suggest that for provinces that do not provide universal drug insurance programs, relying on a patchwork of government plans and community agencies may not be effective in ensuring easy and timely access to necessary medications for children.