Meeting the Needs of Parents of Children With Scoliosis: A Qualitative Descriptive Study.

Needs of parents with children with scoliosis are complex and depend on their child's treatments. The purpose of this study was to identify needs of parents with children with scoliosis. This qualitative description involved interviews with parents of children at various stages of treatment. A convenience, then purposeful sample of 16 parents (12 mothers, two fathers, and two stepfathers) was interviewed; interviews were transcribed and analyzed using thematic analysis. Parents' needs included: Needing reliable medical information; Desiring information on complementary treatments; Wanting help in supporting and advocating for their child; Needing to protect the child and family; and Seeking connection and support. Although many parents' needs are being met, this study recommends a nursing role aimed at providing parents with reliable medical information, discussing alternative treatments, assisting parents in their role of supporting their child, helping parents in their advocacy efforts, and referring parents to appropriate connections.

A Typology of Transition Readiness for Adolescents with Congenital Heart Disease in Preparation for Transfer from Pediatric to Adult Care.

PURPOSE: To understand the effectiveness of a nurse-led transition intervention by analyzing qualitative data generated in the context of a clinical trial. DESIGN & METHODS: Qualitative study of a two-session transition intervention conducted by registered nurses at two sites. Adolescents aged 16-17 years with moderate or complex congenital heart disease (CHD) had been randomized to a two-session transition intervention or usual care. Session 1 emphasized patient education including creation of a health passport and goal setting. Session 2, two months later, emphasized self-management. Qualitative data extracted from intervention logs, field notes and audio recordings of the sessions were analyzed for content and themes. RESULTS: Data from 111 transition intervention sessions with 57 adolescents were analyzed. Creating a health passport, goal setting, and role-plays were the elements of the intervention most valued by participants. A typology of transition readiness was identified: 1) the independent adolescent (5%), already managing their own care; 2) the ready adolescent who was prepared for transition after completing the intervention (46%); 3) the follow-up needed adolescent who was still in need of extra coaching (26%), and 4) the at-risk adolescent who warranted immediate follow-up (14%). Baseline knowledge and transition surveys scores validated the typology. CONCLUSIONS: A two-session nursing intervention met the transition needs of approximately half of adolescents with CHD. However, additional transition-focused care was needed by 40% of participants (groups 3 and 4). PRACTICE IMPLICATIONS: These findings will guide pediatric nurses and other healthcare professionals to optimize an individualized approach for ensuring transition readiness for adolescents with CHD.

Timelines for returning to physical activity following pediatric spinal surgery: recommendations from the literature and preliminary data.

OBJECTIVE: Participation in physical activity and sports is known to have positive implications for physical health, and for social and emotional wellbeing of children. Following corrective spinal surgery for scoliosis, the timeline for the return to activities and sports varies from surgeon to surgeon and from location to location, and return to activities can be limited due to pain, fear, and decreased flexibility. It is critical that patients know best-practice guidelines, and it is equally critical that medical professionals know whether their patients are following those guidelines. This paper includes a summary of recommendations published in the literature, and a pilot study to address a gap in the literature on determining how long, post-surgery, adolescents with idiopathic scoliosis waited before returning to various self-care and physical activities, and what factors influenced return to activities. We used a mixed-method approach that involved two phases: a questionnaire (n = 8), and subsequent interviews of some participants (n = 3). Participants were ages 14-17 (M = 15.4) and had had posterior instrumentation and fusion for scoliosis in the past 2 years. RESULTS: Some patients were cautious about return to activities, either because of emotional or medical reasons. However, in many instances, participants returned to physical activities earlier than was recommended, primarily for emotional and social reasons.

An Evaluation of the Decision-Making Capacity Assessment Model.

BACKGROUND: The Decision-Making Capacity Assessment (DMCA) Model includes a best-practice process and tools to assess DMCA, and implementation strategies at the organizational and assessor levels to support provision of DMCAs across the care continuum. A Developmental Evaluation of the DMCA Model was conducted. METHODS: A mixed methods approach was used. Survey (N = 126) and focus group (N = 49) data were collected from practitioners utilizing the Model. RESULTS: Strengths of the Model include its best-practice and implementation approach, applicability to independent practitioners and inter-professional teams, focus on training/mentoring to enhance knowledge/skills, and provision of tools/processes. Post-training, participants agreed that they followed the Model's guiding principles (90%), used problem-solving (92%), understood discipline-specific roles (87%), were confident in their knowledge of DMCAs (75%) and pertinent legislation (72%), accessed consultative services (88%), and received management support (64%). Model implementation is impeded when role clarity, physician engagement, inter-professional buy-in, accountability, dedicated resources, information sharing systems, and remuneration are lacking. Dedicated resources, job descriptions inclusive of DMCAs, ongoing education/mentoring supports, access to consultative services, and appropriate remuneration would support implementation. CONCLUSIONS: The DMCA Model offers practitioners, inter-professional teams, and organizations a best-practice and implementation approach to DMCAs. Addressing barriers and further contextualizing the Model would be warranted.

Managing Responsive Behaviours: A Wicked Problem Addressed through a Grassroots Approach.

Challenging responsive behaviours, such as aggression, wandering and social inappropriateness, exhibited by persons with neurological, mental health or developmental disorders are of increasing concern across Canada. These behaviours can cause distress or catastrophic outcomes for the person, others in care, caregivers and healthcare providers, and result in extensive resource utilization. The objective of this paper is to discuss the role and impact of a unique, grassroots provincial initiative aimed at networking among healthcare providers, decision-makers and caregivers across government ministries and service-provider agencies. This collaboration provides a model for informing service provision and policy development across multiple stakeholders.

Parental Vigilance in Caring for Their Children with Hypoplastic Left Heart Syndrome.

Hypoplastic left heart syndrome (HLHS) is a complex heart malformation that requires life-saving treatments. Parents experience numerous challenges as they learn to parent a child with complex care requirements. The following research question guided this qualitative study: Is the parenting process among parents of a child with HLHS characterized by exaggerated vigilant parental action, and if so, how does this influence parental response? Situated within a larger program of pediatric cardiology research, this study included data from two grounded theory studies with parents of children with HLHS. This secondary analysis involved a thematic content analysis using sensitizing concepts of uncertainty, protectiveness, support, and mastery of complex care. Transcribed data from 55 interviews with 24 mothers and 17 fathers of young children with HLHS were analyzed for relevant and recurring themes. In mastering skills required to care for their child with HLHS, parents contrasted what was in their hands with what was out of their hands. Vigilant parental actions were evident as parents became skilled at providing complex care. Parents said they were sometimes excessive in their vigilant actions. In retrospect they viewed this vigilance as appropriate in some situations but exaggerated in other situations. Understanding parents' vigilant actions in response to their child's complex care can guide health care providers' interactions with families. Long-term follow up, both clinically and through research, is needed to assess the long-term consequences of exaggerated vigilant parental action on the child, parent, and family, and to determine and evaluate appropriate and timely intervention.

Parenting under pressure: a grounded theory of parenting young children with life-threatening congenital heart disease.

AIM: To report a grounded theory study to describe the process of parenting young children who have survived hypoplastic left heart syndrome to inform parent-focused interventions. BACKGROUND: Technological advances in paediatric cardiology worldwide have improved the survival rates for young children with hypoplastic left heart syndrome who undergo staged surgical palliation. These children, however, are at risk for life-threatening complications and parents are charged with the responsibility to monitor their children at home with minimal support and guidance from healthcare professionals once home. DESIGN: A constructivist grounded theory study. METHOD: The study was conducted in 2006-2008. Participants were 25 parents (15 mothers, 10 fathers) and 28 grandparents (17 grandmothers, 11 grandfathers) of 15 young children (6 months-4·5 years) who had undergone the Sano surgical approach for hypoplastic left heart syndrome. The 53 interviews were digitally recorded, transcribed and analysed using open and focused coding, constant comparative analysis and memoing. FINDINGS: A process of Parenting under Pressure emerged that was characterized by four overlapping and re-emerging phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating the unexpected; and (4) encountering new challenges. CONCLUSIONS: In-depth understanding of the phases of Parenting under Pressure provides direction for nurses to support parents of children who survive hypoplastic left heart syndrome. Interventions that help carers of children with complex health conditions move through the phases of our Parenting under Pressure process may help them safeguard the survival of their children, and their own survival as parents as they manage multiple demands.

Facets of parenting a child with hypoplastic left heart syndrome.

The purpose of the study was to conceptualize the needs of parents of young children with hypoplastic left heart syndrome (HLHS) to provide a theoretical framework to inform the development of future parent interventions. Participants were parents and grandparents (n = 53) of 15 young children who had undergone the Sano surgical approach for HLHS. Analysis of recorded and transcribed single interviews with each participant was done as directed by interpretive description methodology. A model of five facets of parenting was conceptualized. These included survival parenting, "hands-off" parenting, expert parenting, uncertain parenting, and supported parenting. The facets of parenting delineated through this study provide a theoretical framework that can be used to guide the development and evaluation of interventions for parents of children with complex congenital heart disease and potentially other life-threatening conditions. Each facet constitutes a critical component for educational or psychosocial intervention for parents.

The process of family management when a baby is diagnosed with a lethal congenital condition.

The Family Management Style Framework (FMSF) was used as a conceptual basis for secondary data analysis of 55 previously conducted interviews with mothers and fathers of children with a lethal congenital condition from two surgical treatment eras. The directed content analysis was guided by a coding structure developed from family management dimensions identified in prior research of family response to childhood chronic conditions. Results indicated that application of the FMSF was helpful in differentiating families and their processes of family management at the onset of their infant's illness through to surviving the first surgery and going home. The dimensions of Illness View and Child Identity were central to the parents' capacity to manage their baby's illness demands within their family context. Applying a robust family framework to a complex neonatal condition at illness onset provides compelling direction for clinical interventions and their rigorous evaluation.