Parents of deaf children with cochlear implants: a study of technology and community

The cochlear implant (CI) is increasingly used to treat deafness, despite arguments from the deaf community. Deaf children born to hearing parents are the fastest growing group of CI recipients, making parents the primary consumers. Instead of focusing on the controversy over implants, this article examines the clinical structures shaping parental decision-making and how parents integrate clinical practices into family and community. Observations and in-depth interviews were conducted in a CI clinic and at various community sites. The data reveal strong inter-institutional co-operations between the clinic, the state and local school districts. Working together, these institutions anticipate parental needs, foster a CI community and thus increase compliance. I conclude that implantation is an ongoing practice enculturating parents into a new community characterised by the adoption of long-term rehabilitative duties. However, the long-term nature of rehabilitation creates disparities in outcomes, which would be better understood through further research on the social relations in families and across parent networks in the CI community.     

The decision-making process of parents regarding organ donation of their brain dead child: a Greek study

The purpose of this qualitative study, which was part of a larger study on parental bereavement, was to explore the decision-making process of parents who were invited to donate the organs and tissues of their brain dead child. Research objectives were to investigate how parents reach a decision and which factors affect consent or refusal regarding organ donation. The experiences of 22 parents of 14 brain dead children, hospitalized in two pediatric intensive care units (PICU) in Athens, were studied through semi-structured interviews. Data collection and analysis of the overall study were performed according to grounded theory methodology. Factors that influenced parents' decisions were identified and classified into (a) personal factors, (b) conditions of organ request, (c) parents' prior knowledge and experience with organ donation or serious illness, and (d) interpersonal factors. Findings can help care providers to facilitate the decision-making process and respond to parental needs while taking into account the socio-cultural context within which decisions are made. The donation request is meaningful and effective when it is integrated into an approach that offers ongoing support to parents who are faced with the unexpected death of their child.     

The social determinants of health as predictors of adherence to public health preventive measures among parents and young children during the COVID-19 pandemic: a longitudinal cohort study

ObjectivesTo investigate whether social determinants of health (SDOH) are predictive of adherence to public health preventive measures and to describe changes in adherence over time among parents and children.MethodsA longitudinal study was conducted in children aged 0–10 years and their parents through the TARGet Kids! COVID-19 Study in the Greater Toronto Area, Canada (April–July 2020). This study included 335 parents (2108 observations) and 416 children (2632 observations). Parents completed weekly questionnaires on health, family functioning, socio-demographics, and public health practices. The outcome was adherence to public health preventive measures measured separately for parents and children. Marginal log-binomial models were fitted using repeated measures of the outcome and predictors.ResultsUnemployment (RR 0.67, 95% CI: 0.47, 0.97), apartment living (RR 0.72, 95% CI: 0.53, 0.99), and essential worker in the household (RR 0.74, 95% CI: 0.55, 1.00) were associated with decreased likelihood of adherence among parents; however, no associations were observed for other SDOH, including family income and ethnicity. Furthermore, there was no strong evidence that SDOH were associated with child adherence. The mean number of days/week that parents and children adhered at the start of the study was 6.45 (SD = 0.93) and 6.59 (SD = 0.86), respectively, and this decreased to 5.80 (SD = 1.12) and 5.84 (SD = 1.23) by study end. Children consistently had greater adherence than parents.ConclusionSDOH were predictive of adherence to public health preventive measures among parents but less so in children among our sample of relatively affluent urban families. Adherence was high among parents and children but decreased over time. Equitable approaches to support the implementation of public health guidelines may improve adherence.Supplementary InformationThe online version contains supplementary material available at 10.17269/s41997-021-00540-5.     

Expectations of patients and parents of children with asthma regarding access to complementary therapy information and services via the NHS: a qualitative study

OBJECTIVE: To explore the expectations of patients and parents of children with asthma regarding access to complementary therapies via the NHS. METHODS: Fifty semi-structured interviews with adults and parents of children with asthma, from a range of health-care settings, including users and non-users of complementary therapies. Interviews were recorded, transcribed verbatim and the data were analysed thematically. RESULTS: Thirty-one patients were using complementary therapies for asthma, six were using complementary therapies for other health problems and 13 were non-users. Various therapies were used for asthma, most commonly homeopathy and breathing techniques, predominantly outside the NHS. Two broad themes emerging from the data were expectations about access to information and knowledge about complementary therapies via NHS health professionals, and expectations regarding access to complementary therapy services via the NHS. As a minimum, the majority of participants wanted NHS health professionals to be more 'open' towards and know more about complementary therapies than their patients - perceived as not currently usual. Most were positive about greater NHS access to complementary therapy services, for enhancing patient choice, improving equality in access for less affluent patients and facilitating patients' self-help. Participants who were highly sceptical about complementary therapies argued that lack of scientific evidence of effectiveness prohibited the need for greater complementary therapy knowledge or service provision within the NHS. Alongside their expectations, patients and parents expressed realistic views about facilitators and barriers to greater access. CONCLUSIONS: While health service planners and providers often express reservations about the value of complementary therapies, it is important to take patients' preferences into account if policy discourses regarding patient-centred care and choice are to be realized in practice.     

Decision-making in community-based paediatric physiotherapy: a qualitative study of children, parents and practitioners

Approaches to practice based on partnership and shared decision-making with patients are now widely recommended in health and social care settings, but less attention has been given to these recommendations in children's services, and to the decision-making experiences of non-medical practitioners and their patients or clients. This study explored children's, parents' and practitioners' accounts of shared decision-making in the context of community-based physiotherapy services for children with cerebral palsy. Semi-structured interviews were conducted with 11 children with cerebral palsy living in an inner city area of northern England, and with 12 of their parents. Two focus groups were conducted with 10 physiotherapy practitioners. Data were analysed using the constant comparative method. When asked explicitly about decision-making, parents, children and practitioners reported little or no involvement, and each party saw the other as having responsibility for decisions. However, when talking in more concrete terms about their experiences, each party did report some involvement in decision-making. Practitioners' accounts focused on their responsibility for making decisions about resource allocation, and thereby, about the usefulness and intensity of interventions. Parents indicated that these practitioner-led decisions were sometimes in conflict with their aspirations for their child. Parents and children appeared to have most involvement in decisions about the acceptability and implementation of interventions. Children's involvement was more limited than parents'. While parents could legitimately curtail unacceptable interventions, children were mostly restricted to negotiating about how interventions were implemented. In these accounts the involvement of each party varied with the type of issue being decided and decision-making appeared more unilateral than shared. In advocating shared decision-making, greater understanding of its weaknesses as well as its strengths, and greater clarity about the domains that are suitable for a shared decision-making approach and the roles of different parties, would seem a helpful step.     

Biomonitoring of mercury,cadmium, and lead exposure in Japanese children: a cross-sectional study

Objectives

To measure current Hg, Cd, and Pb exposure in Japanese children, and to estimate dietary intakes of foods responsible for high body burden.

Methods

Blood, hair, and urine samples were collected from 9 to 10-year-old 229 children in Asahikawa and measured for Hg, Cd, and Pb in these matrices. Diet history questionnaire was used to estimate intake of marine foods and other food items. Hg level was measured by cold vapor atomic absorption spectrometry. Cd and Pb levels were determined with inductively coupled plasma mass spectrometry.

Results

Geometric mean (GM) of blood Hg, Cd, and Pb was 4.55 μg/L, 0.34 μg/L, and 0.96 μg/dL, respectively. Urinary Cd level was 0.34 μg/g creatinine (GM) and hair Hg was 1.31 μg/g (GM). Approximately one-third (35 %) of blood samples had Hg level above the U.S. EPA reference dose (RfD; 5.8 μg/L). Hair Hg level exceeded U.S. EPA RfD (1.2 μg/g) in 59 % samples. Children in the upper quartile of blood Hg level had significantly higher intake of large predatory fish species compared to those in the lower quartile of blood Hg.

Conclusions

Those with high blood Hg level may be explained by more frequent intake of big predatory fish. Cd and Pb exposure is generally low among Japanese children. As no safety margin exists for Pb exposure and high exposure to MeHg is noted in Japanese population; periodic biomonitoring and potential health risk assessment should continue in high-risk populations, notably among children.     

Effectiveness of influenza vaccination for children in Japan: Four-year observational study using a large-scale claims database

BackgroundTo date, few large-scale comparative effectiveness studies of influenza vaccination have been conducted in Japan, since marketing authorization for influenza vaccines in Japan has been granted based only on the results of seroconversion and safety in small-sized populations in clinical trial phases not on the vaccine effectiveness. We evaluated the clinical effectiveness of influenza vaccination for children aged 1–15 years in Japan throughout four influenza seasons from 2010 to 2014 in the real world setting.MethodsWe conducted a cohort study using a large-scale claims database for employee health care insurance plans covering more than 3 million people, including enrollees and their dependents. Vaccination status was identified using plan records for the influenza vaccination subsidies.The effectiveness of influenza vaccination in preventing influenza and its complications was evaluated. To control confounding related to influenza vaccination, odds ratios (OR) were calculated by applying a doubly robust method using the propensity score for vaccination.ResultsTotal study population throughout the four consecutive influenza seasons was over 116,000. Vaccination rate was higher in younger children and in the recent influenza seasons. Throughout the four seasons, the estimated ORs for influenza onset were statistically significant and ranged from 0.797 to 0.894 after doubly robust adjustment. On age stratification, significant ORs were observed in younger children. Additionally, ORs for influenza complication outcomes, such as pneumonia, hospitalization with influenza and respiratory tract diseases, were significantly reduced, except for hospitalization with influenza in the 2010/2011 and 2012/2013 seasons.ConclusionsWe confirmed the clinical effectiveness of influenza vaccination in children aged 1–15 years from the 2010/2011 to 2013/2014 influenza seasons. Influenza vaccine significantly prevented the onset of influenza and was effective in reducing its secondary complications.     

Outcomes of importance to children and young adults with cerebral palsy,their parents and health professionals following lower limb orthopaedic surgery: A qualitative study to inform a Core Outcome Set

IntroductionAlthough several outcomes are commonly measured to assess the effect of surgery for young people with cerebral palsy (CP), these are selected mainly by health professionals and researchers. Including the perspectives of a broader range of stakeholders is an essential step towards determining important outcomes for assessment. This qualitative study involves the development of a core outcome set (COS) for lower limb orthopaedic surgery for ambulant children with CP.ObjectiveThis study aimed to identify outcomes that matter to children and young people with CP, their parents and healthcare professionals following lower limb orthopaedic surgery.MethodsSemi‐structured interviews were conducted with 10 healthcare professionals, 10 children and young people with CP and 8 parents. Interview data were analysed by content analysis supported by the International Classification of Functioning, Disability and Health (ICF‐CY) supplemented by thematic analysis.FindingsThirty‐one outcomes were identified in total, which were linked to eleven second‐level ICF‐CY categories. There were differences between stakeholder groups in preferences and expectations from surgical outcomes. Healthcare professionals and children with their parents identified 31 and 25 outcomes, respectively. Health outcomes valued by participants were lower limb alignment and symmetry, flexibility and muscle strength, mental health, fatigue, pain, function in life, mobility, participation, being independent, quality of life and adverse events. Compared to previous published trials, 10 new outcomes were revealed by this study.ConclusionThe researchers identified outcomes that are important to all stakeholders following lower limb orthopaedic surgery for ambulant CP. Including these outcomes in future studies would promote patient‐centred care for children and young adults with CP. Findings will be used to inform an international Delphi survey and develop a COS in this field.Patient and Public ContributionThis study was informed by an advisory group including a young adult with CP and a parent of a child with CP. This group engaged in the design of the study and the information material to support the interview (information sheet and interview topic guide).     

Immunogenicity and safety of a fully liquid aluminum phosphate adjuvanted Haemophilus influenzae type b PRP-CRM197-conjugate vaccine in healthy Japanese children: A phase III,randomized, observer-blind,multicenter, parallel-group study

BackgroundBroad use of monovalent Haemophilus influenzae type b (Hib) conjugate vaccines based on the capsular polysaccharide polyribosyl-ribitol phosphate (PRP), has significantly reduced invasive Hib disease burden in children worldwide, particularly in children aged <1 year. In Japan, PRP conjugated to tetanus toxoid (PRP-T) vaccine has been widely used since the initiation of public funding programs followed by a routine vaccination designation in 2013.MethodsWe compared the immunogenicity and safety of PRP conjugated to a non-toxic diphtheria toxin mutant (PRP-CRM₁₉₇) vaccine with the PRP-T vaccine when administered subcutaneously to healthy Japanese children in a phase III study. Additionally, we evaluated the immunogenicity and safety profiles of a diphtheria–tetanus acellular pertussis (DTaP) combination vaccine when concomitantly administered with either PRP-CRM₁₉₇ or PRP-T vaccines. The primary endpoint was the “long-term seroprotection rate”, defined as the group proportion with anti-PRP antibody titers ⩾1.0 μg/mL, after the primary series.ResultsLong-term seroprotection rates were 99.3% in the PRP-CRM₁₉₇ group and 95.6% in the PRP-T group. The intergroup difference (PRP-CRM₁₉₇ group – PRP-T group) was 3.7% (95% confidence interval: 0.099–7.336), demonstrating that PRP-CRM₁₉₇ vaccine was non-inferior to PRP-T vaccine (p < 0.0001). Furthermore, the “short-term seroprotection rate” (anti-PRP antibody titer ⩾0.15 μg/mL) before booster vaccination was higher in the PRP-CRM₁₉₇ group than in PRP-T. Concomitant administration of PRP-CRM₁₉₇ vaccine with DTaP vaccine showed no differences in terms of immunogenicity compared with concomitant vaccination with PRP-T vaccine and DTaP vaccine. Although CRM₁₉₇ vaccine had higher local reactogenicity, overall, both Hib vaccines had acceptable safety and tolerability profiles.ConclusionThe immunogenicity of PRP-CRM₁₉₇ vaccine administered subcutaneously as a three-dose primary series in children followed by a booster vaccination 1 year after the primary series induced protective levels of Hib antibodies with no safety or tolerability concerns.Clinical trial registry: Registered on ClinicalTrials.gov: NCT01379846