Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers’ views (original) (raw)
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Poor compliance with medication is a serious problem in chronic and terminal illness, and remains poorly understood. The authors narrate the experiences of a psychotherapist working in a state hospital and facing issues of non-compliance in a serious childhood illness - thalassemia major. Interventions started at a time of iron overload at life threatening levels, in a group of thalassemic patients. After six years of multi-level interventions with end-of-study patient follow-up, it was found that the target group eventually reached the ideal treatment regimen and levels. Compliance was addressed as one epiphenomenon of the problematic interface between the thalassemia group and the provider system.
The role of specialist nurses in improving treatment adherence in children with a chronic illness
The Australian journal of advanced nursing : a quarterly publication of the Royal Australian Nursing Federation
Adherence to medical treatment is an ongoing challenge for families and young people with chronic medical conditions. One factor that is likely to influence treatment success is the quality of professional relationships both within the health care team and between the family, child and professionals. This paper explores the topic of professional relationships and adherence and provides an example of how a multidisciplinary team can improve the health and quality of life of paediatric patients. More specifically, the paper argues for the crucial role of the specialist nurse in supporting patients and their relationships with the health care team.
Care for Families of Children with Chronic Disease
2018
Objective: to know what has been produced about the care provided for families of children with chronic disease. Method: integrative review that sought to survey the publications of the last 10 years in the MEDLINE, LILACS, BDENF, INDEX PSICOL databases and in the virtual library SciELO. After reading the selected articles, we analyzed data of the studies regarding authorship, objectives, year of publication, method and level of evidence. Results: the findings led to two thematic categories << Facing the diagnosis of a chronic disease, change of habits and family reorganization >> and << Care routines of families with children with chronic conditions >>. Conclusion: Families of children with chronic diseases have their routines modified, often losing control over their lives. We believe that if families are well informed about the pathology and if they are empowered to care for the child, they will be able to develop autonomy over the organization of their li...
Strategies of Families in the Care of Children with Chronic Diseases
Texto & Contexto - Enfermagem, 2015
ABSTRACTthis study aimed to know the strategies of families in the care of children with chronic diseases. A descriptive and exploratory research was carried out using a qualitative approach, in a Pediatric Unit of a university hospital in the south of Brazil, during the first and second halves of 2013. The study involved 15 participating families. Data were collected by means of interviews subjected to thematic analysis. It was identified as strategies: balance work, study and care, share tasks throughout the day, adapt the physical area of the house, engage the child in their own care, seek resources in the network of social support and faith, seek assistance in another city; and engage in physical activity to reduce stress. It was concluded that it is necessary that the nurses participate of the family support network, as a support source for the strengthening of the family to the care, acquiring skills and expertise to a positive coping of the child's chronic disease.
Childhood long-term conditions in primary care: a qualitative study of practitioners' views
The British journal of general practice : the journal of the Royal College of General Practitioners, 2015
Improving child health and wellbeing in England was the key focus of the Chief Medical Officer's Annual Report 2012, which recommended that all children with long-term conditions (LTCs) have a named GP responsible for their care. Little is known, however, about practitioners' views and experiences of supporting children with LTCs in primary care. To explore practitioners' views of supporting children with LTCs and their families in primary care. Qualitative interview study in primary care settings in South Yorkshire, England. Interviews explored practitioners' views and experiences of supporting children with asthma, cystic fibrosis, type 1 diabetes, and epilepsy. Interviews were audiotaped, transcribed verbatim, and analysed using the framework approach. Nineteen practitioners were interviewed: 10 GPs, five practice nurses, and four nurse practitioners. The GPs' clinical roles included prescribing and concurrent illness management; nurse practitioners held minor...
Correlates of problem resolution during parent-child discussions about chronic illness management
Children's Health Care, 2015
Families impacted by pediatric chronic illness must navigate treatment regimens that can present multiple problems and decisions to be addressed on a daily basis. The extent to which parents and children are able to solve such problems is likely to have implications for health behaviors and outcomes. The aims of this study were to examine correlates of problem resolution in families of children with a chronic illness. Participants were 167 children (ages 8-16) with type 1 diabetes or cystic fibrosis and a parent. Parent-child dyads recounted a recent discussion they had related to illness management and completed questionnaires. The research team coded the discussions for topic and outcome (i.e., did the dyad come up with a plan to address the problem). The results indicated that the majority of dyads in both illness groups came up with a plan during their discussions. Lack of problem resolution during the discussion was associated with higher parent coercion, more child resistance to the regimen, and worse adherence. Parent coercion and child resistance could be the targets of interventions to enhance problem solving and improve adherence. Parents and children impacted by pediatric chronic illnesses, such as type 1 diabetes (T1D) and cystic fibrosis (CF), must navigate complex treatment regimens and discuss decisions and problems that arise when managing the illness in everyday life. The treatment regimen for CF can include symptom monitoring, chest physiotherapy, aerosol breathing treatments, prophylactic antibiotics, pancreatic enzyme replacement, and increased caloric intake (Stark, Mackner, Patton, & Acton, 2003). The management of T1D requires children to monitor symptoms, test blood sugars, and adjust diet, physical activity and insulin doses to maintain optimal glucose levels (Seiffge-Krenke, 2002). Adequate adherence is necessary for effectively managing symptoms and preventing negative short-and long-term health consequences of each illness (DCCT Research Group, 1993, 1994). Potential barriers to adherence are many and include forgetfulness, lack of organization, peer issues (e.g., embarrassment, stigma), lack of support from parents, family conflict, desire to achieve normalcy, side effects of treatments, treatment complexity/burden, low perceived benefit of medications, and mood/anxiety problems (George et al.
Continuity of care for children with complex chronic health conditions: parents' perspectives
BMC Health Services Research, 2009
Background: Continuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient factors in the experience of, and factors contributing to, continuity in this population.
Children with a Long-Term Illness: Parents' Experiences of Care
Journal of Pediatric Nursing, 2006
A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.
The experience of parenting children with chronic health conditions: a new reality
Journal of Nursing and …, 2010
The experience of parenting children with chronic health conditions: a new reality Aim. This study was undertaken to synthesise recent qualitative literature in the years 2000 to 2009, exploring the phenomenon of parents' experiences of parenting a child with one or more chronic health conditions. Background. The experience of parenting children with chronic health conditions has been predominantly studied by examining the effects of specific illnesses such as sickle cell anaemia and cystic fibrosis. While the chronic conditions may differ, the parents of children with any chronic illness appear to experience similar phenomena as they care for and parent their affected children. Method. Metasynthesis is an exacting process of analysis of focused qualitative research results aimed at advancing knowledge and concept development through the synthesis and summation of themes and concepts extracted from the included studies.