Family Perspective Research Articles

What influences physician opioid prescribing for children with acute pain?

Pain is one of the most common symptoms encountered in the healthcare system, and opioids are among the top three medications used to treat it. Understanding the reasoning behind physicians' opioid prescribing practices is vital to safe practice. The primary objective of our study was to describe pediatric emergency physicians' decision-making process when prescribing opioids for children's acute pain management. This study employed qualitative methodology, using one-on-one semi-structured interviews within a grounded theory analytic framework. We employed purposeful sampling to recruit pediatric emergency physicians from across Canada. Interviews were conducted by telephone (December 2019-January 2021). Transcript analysis occurred concurrently with data collection, supporting data saturation and theory development considerations. Eleven interviews were completed with participants representing each of Canada's geographic regions. Nine major themes emerged: (1) practice setting and outpatient opioid use, (2) condition-specific considerations, (3) physician confidence in medical evidence, (4) pain assessment challenges, (5) patient and family perspectives, (6) opioid safety concerns, (7) personal biases and experiences, (8) personal practice context, and (9) the Opioid Crisis/media influence. Most clinicians felt that they limited opioid use to those who needed it most; all participants described challenges managing acute pain, emphasizing the need for accurate pain measurement and better guidelines, evidence-based data, and knowledge translation. Clinicians were more comfortable treating pain in the emergency department, compared to discharge prescribing. They recognized the importance of co-therapy with non-opioids and the need for opioid risk assessment when prescribing. A family centered approach was recognized as the goal of practice. Clinicians are less comfortable prescribing opioids to children for at-home use and find pain assessment and lack of clear guidelines to be barriers to pain care. Knowledge translation strategies for safer practice and optimal acute pain management could support responsible and judicious opioid use.

Socijalnopedagoško značenje porodice

The aim of this paper is to point out the meaning that Social Pedagogy assigns to family. The discussion about family led within social sciences is permeated by the discoveries of the systems theory, which places family at the level of a complex system functioning which is nuanced by the action of internal subsystems and external mechanisms of other systems. In this sense, the socio-pedagogical perspective of family is here presented through socio-pedagogical prevention, treatment and post-treatment efforts. The paper presents the place of family in the prevention and conceptual construct of risk and protective factors, resilience, developmental advantages and positive development. Moreover, it emphasizes the essential role of family as a source and factor in socio-pedagogical comprehensive assessment, planning and implementation of socio-pedagogical treatment and post-treatment.

Voices to be heard: Understanding family perspectives in forensic care trajectories.

De-institutionalization of psychiatric care has greatly increased the role of family members in the recovery pathways of Persons labeled as Not Criminally Responsible (PNCR). However, the role of family members in supporting PNCR in forensic psychiatric care remains understudied. Scarce evidence indicates that PNCR have to deal with stigma and endure specific burdens (i.e., symptom-specific, financial, social, and emotional). Recovery-focused research showed that recovery in both persons with a severe mental illness and family members develop in parallel with each other and are characterized by similar helpful principles (e.g., hope and coping skills). As such, the recovery pathways of PNCR often goes hand in hand with the recovery pathway of their family members. During the family recovery process, family members often experience not being listened to or being empowered by professionals or not being involved in the decision-making process in the care trajectory of their relative. Therefore, the aim of this study is to capture how family members experience the care trajectories of their relatives, more specifically by looking at family recovery aspects and personal advocacy of family members. Semi-structured interviews were conducted with 21 family members of PNCR from 14 families. A thematic analysis confirms that family members suffer from stigma and worry significantly about the future of their relative. Regarding the care trajectory of PNCR, family members experienced barriers in multiple domains while trying to support their relative: involvement in care and information sharing, visiting procedures, transitions between wards, and the psychiatric and judicial reporting by professionals. In addition, family members emphasized the importance of (social) support for themselves during the forensic psychiatric care trajectories and of a shared partnership. These findings tie in with procedural justice theory as a precondition for family support and family recovery within forensic psychiatric care.

A family perspective on parental psychosis: An interpretative phenomenological analysis study.

While one third of people with a psychotic disorder are a parent, there has been little research to date examining the consequences of this from a whole family perspective. This study investigates families where a parent has experienced an episode of psychosis and compares and contrasts the family members' perspectives. This study was rooted in phenomenology and data were derived from in-depth semi-structured interviews. Parents with a psychotic disorder who had a child aged between 3 and 11 in a UK NHS Trust were invited to take part in the study. Semi-structured interviews were conducted with these parents, with their child (if they were between the ages of 8 and 11), and with their partner or another close family member. Data were analysed using multiperspectival interpretive phenomenological analysis (m-IPA). Thirteen participants took part comprising of five parents, four children, three partners and one grandmother. Four themes were developed using m-IPA: (1) Parental psychosis impacts the whole family, (2) Psychosis and my role as a parent, (3) Secrecy and concealment surrounding parental psychosis, and (4) Pressures and vulnerabilities within the family system. Psychosis had a negative impact on all family members and secrecy existed between family members. The children in particular only had partial information about their parent's mental illness, which left them worried and confused. More work is needed to support these families to explain psychosis to the children.

Study protocol for First Dental Steps Intervention: feasibility study of a health visitor led infant oral health improvement programme

BackgroundDental caries in childhood is a burden on the daily lives of children and their families, and associated with poor oral health in adulthood. In England, dental caries is the most common reason for young children to be admitted to hospital. It is believed that most tooth extractions (due to decay) for children aged 10 years and under, could be avoided with improved prevention and early management. National public health policy recommendations in England include specific oral health initiatives to tackle tooth decay. One of these initiatives is delivered as part of the Healthy Child Programme and includes providing workforce training in oral health, integrating oral health advice into home visits, and the timely provision of fluoride toothpaste. This protocol seeks to assess the delivery of the First Dental Steps intervention and uncertainties related to the acceptability, recruitment, and retention of participants.MethodsThis study seeks to explore the feasibility and acceptability of the First Dental Steps intervention and research methods. First Dental Steps intervention will be delivered in local authority areas in South West England and includes oral health training for health visitors (or community nursery nurses) working with 0–5-year-olds and their families. Further, for vulnerable families, integrating oral health advice and the provision of an oral health pack (including a free flow cup, an age appropriate toothbrush, and 1450 ppm fluoride toothpaste) during a mandated check by a health visitor. In this study five local authority areas will receive the intervention. Interviews with parents receiving the intervention and health visitors delivering the intervention will be undertaken, along with a range of additional interviews with stakeholders from both intervention and comparison sites (four additional local authority areas).DiscussionThis protocol was written after the start of the COVID-19 pandemic, as a result, some of the original methods were adjusted specifically to account for disruptions caused by the pandemic. Results of this study will primarily provide evidence on the acceptability and feasibility of both the First Dental Steps intervention and the research methods from the perspective of both families and stakeholders.

Evaluation of a course for neonatal fellows on providing psychosocial support to NICU families.

Families in the Neonatal Intensive Care Unit (NICU) experience significant psychological distress. Fellowship training requires education on mental health issues. No standardized program exists. We evaluated the impact of an online course, combining research with family perspectives, on neonatology fellow knowledge and self-efficacy when emotionally supporting NICU families. Fellows from 20 programs completed a course covering: (1) Parent Mental Health, (2) Infant Mental Health, (3) Communication, and (4) Comprehensive Mental Health (e.g., discharge, bereavement) with pre- and post-course knowledge and self-efficacy assessments. Fellows (n=91) completed the course and assessments. Pre-course knowledge was similar by year of training (1st: 66.9%; 2nd: 67.2%; 3rd: 67.4%). Mean knowledge and self-efficacy improved between pre- and post-course assessments regardless of training year or prior education for knowledge (d=1.2) (67.1% vs. 79.4%) and for self-efficacy (d=1.2) (4.7 vs 5.2 on 6-point Likert scale). Fellows who gained more knowledge had higher self-efficacy scores at post-test (r = .37). Current neonatal fellowship training under-educates on mental health. An online course improved fellow knowledge and self-efficacy. Our course may be an exemplar for others creating similar curricula. An online course enriched by patient perspectives is an effective method of disseminating education around mental health.

An Introduction

An Introduction

PP124 The Importance Of Flexible PPI Approaches: Case Study On Flash Glucose Monitoring

IntroductionHealth Technology Wales (HTW) review guidance 3 years after publication to establish if reassessment is warranted because, for example, new evidence has become available. Since the publication of guidance on flash glucose monitoring (FGM) in 2018, HTW introduced a patient and public involvement (PPI) process with novel approaches to flexible engagement. This enabled HTW to include three streams of patient evidence into the review of FGM devices.MethodsHTW’s Patient and Public Involvement Standing Group (PPISG) considered appropriate methods of engagement using the HTW Patient and Public Involvement Mechanism Tool. This tool considers the nature of the health technology, the presence of appropriate patient organizations and questions that can be put to patients, as well as other approaches for obtaining patient evidence.ResultsHTW contacted Diabetes Cymru and met with them to discuss contributing to the appraisal of FGM devices. Diabetes Cymru produced a patient submission summarizing the experiences of their patient network, with particular focus on the expansion of the technology to closed-loop insulin systems. Diabetes Cymru later attended HTW’s Appraisal Panel committee and gave a presentation. Additionally, HTW conducted a patient evidence literature review. This review summarized published qualitative studies on a range of perspectives, including carer perspectives, family perspectives, children and adolescences perspectives as well as considerations from specific environments, such as schools, workplaces, homes, care homes and communities. In addition to new clinical and cost effectiveness evidence, this PPI input was used to formulate new guidance recommending more widespread adoption of FGM.ConclusionsThe introduction of flexible approaches to PPI enabled HTW to gain patient evidence from multiple sources. This ensured greater patient representation and a more detailed understanding of the role of FGM devices across different patient communities. This added considerable richness to the patient evidence, which is vital to understand the everyday impacts of FGM and its use amongst patients. Combining flexible PPI with the new clinical and cost effectiveness evidence resulted in a change in the original guidance recommendation.

Medication Non-Compliance in Patients with Schizophrenia Due To Familial, Environmental and Socio-Cultural Factors

Introduction: In schizophrenia, non-compliance with treatment leads to the disease burden in the community. It is considered as a challenge worldwide due to the need for long-term treatment and additional associated factors in Schizophrenia. Aim: The goal of the study is to identify patients with treatment non-compliance in schizophrenia and determine the related factors from environmental, socio-cultural and familial perspectives. Place and Duration: The study was carried out at the department of Behavioral Sciences, PGMI /AMC / LGH Lahore, Pakistan, from November 2021 to April 2022. Methods: The study included 100 patients with non-compliance to treatment in schizophrenia who visited the relevant psychiatric departments. For the research a descriptive cross-sectional design was chosen with non-random, purposive sample selection technique being utilised. Prior to the study, ethical approval from the authorities and informed consent from patients were obtained. Educated patients completed questionnaires whereas uneducated patients asked their relatives to provide such information on questionnaires. Results: Out of 100 participants, 56 were males and 44 were females, with a ratio of 1.4:1. The participants mean age was 32.25 ± 11.1. About 23% of them were uneducated, and above sixty percent (61%) had a family income < 20,000 PKR rupees per month. A substantial percentage of family-members (15%) were unaware of their role and that of their family members, and the majority (77%) stated that people made a negative contribution. Factors contributing to treatment non-compliance included belief as a major life event (6%), perception about the disease being incurable (25%), lack of nearby treatment access (76%), migration (8%), forgetting an appointment with medical professional (18%), discontinuation of medication on the advice of a faith healer (16%), discontinuation of medication due to social stigma (14%), no follow-up being arranged (22%), and refusal to continue treatment (13%). Conclusions: The study aimed to identify the possible reasons for medication non-compliance in patients of schizophrenia from environmental, socio-cultural and familial perspectives. Many factors have been recognised that contribute indirectly or directly to the treatment non-compliance. Keywords: Non-Compliance, Compliance and Schizophrenia.

A family-based approach to public rental housing in Chongqing, China: a perspective of rural migrant households

Since 2010, the city of Chongqing in south-western China has built 40 million square metres of public rental housing, responding to China’s New Urbanisation Plan. Due to its emphasis on massive provision and the role played by the state, public rental housing in Chongqing has attracted considerable attention. Yet few studies have examined the effects of this scheme on household strategies and experiences from the perspective of rural migrant families. The results of 120 semi-structured interviews with rural migrants show that they tend to adopt a family-based approach to maximise their households’ economic and non-economic interests when considering resettling.

Key drivers of family-level utility of pediatric genomic sequencing: a qualitative analysis to support preference research.

Given that pediatric genomic sequencing (GS) may have implications for the health and well-being of both the child and family, a clearer understanding of the key drivers of the utility of GS from the family perspective is needed. The purpose of this study is to explore what is important to caregivers of pediatric patients regarding clinical GS, with a focus on family-level considerations. We conducted semi-structured interviews with caregivers (n = 41) of pediatric patients who had been recommended for or completed GS that explored the scope of factors caregivers considered when deciding whether to pursue GS for their child. We analyzed the qualitative data in multiple rounds of coding using thematic analysis. Caregivers raised important family-level considerations, in addition to those specifically for their child, which included wanting the best chance at good quality of life for the family, the ability to learn about family health, the impact on the caregiver's well-being, privacy concerns among family members, and the cost of testing to the family. We developed a framework of key drivers of utility consisting of four domains that influenced caregivers' decision making: underlying values, perceived benefits, perceived risks, and other pragmatic considerations regarding GS. These findings can inform measurement approaches that better capture the utility of pediatric GS for families and improve assessments of the value of clinical GS.

Dene, métis and inuvialuit peoples’ voices on the impact of Canada’s perinatal transport and non-medical escort policy in their communities: an outcome assessment approach and narrative literature review

ABSTRACT Historically, there is a documented lack of support for women leaving their communities to give birth. Due to an over-emphasis on risk discourse (no distinction between low- or high-risk pregnancies with options to birth at home, the large geographical distances to regional centres within circumpolar regions, remoteness of communities, lack of qualified staff, and limited resources), women are forced to travel great distances to give birth. In Canada until 2017, women travelled alone or bore the burden of paying out of pocket for someone to travel with them for support with the births of their babies. A recent policy change has allowed for one paid escort to accompany a pregnant woman. The purpose of this paper is to provide an outcome assessment of the perinatal transport and non-medical escort policy implemented by the federal government in Canada. The paper utilises a narrative literature review along with preliminary Indigenous photovoice results to illuminate the perspectives of Indigenous families. There are numerous challenges women face when travelling for birth including feelings of loneliness and fear, stress and separation from their children, lack of community connection, financial concerns, and a loss of self-determination. Women are given an opportunity in decision-making about who will travel with them as an escort. This does little to address the disparity of delivering their babies away from their families and communities, the burden of figuring out who cares for the children at home, and the impact their absences have on health of their families. Although, additional support has been provided for birthing women in northern Canada, there continues to be little effort to return to community birthing creating safety for Indigenous families through traditional practices, Indigenous midwifery, and community ceremonies and changing the disproportionate burden of poor outcomes experienced by Indigenous women.

Psychosocial Impact of the COVID-19 Pandemic on Children With Cochlear Implants and Their Parents/Family Members.

The purpose of this study was to describe hearing health care and education experiences of children with cochlear implants (CIs) during the COVID-19 pandemic and the potential psychosocial effects of the pandemic on these children and their parents/family members. The study used a cross-sectional survey design. The study sample comprised two groups, namely, parents/family members of children with CIs (study group, n = 70, M age = 44.6 ± 12.4 years) and parents/family members of children with normal hearing (control group, n = 58, M age = 43.8 ± 11.5 years). Parents/family members completed the Perceived Stress Scale (PSS), the Coronavirus Anxiety Scale (CAS), and the Family Perspective Profile form, as well as the Demographic Information form. The PSS scores of the study group were higher than those of the control group (p = .001). However, there was no statistically significant difference between groups in the CAS scores (p = .896). According to the Family Perspective Profile form, almost half of the parents/family members of children with CIs reported that their children experienced difficulties in education and hearing health care services during the pandemic and showed some changes in their attitudes and behaviors. During the pandemic, the stress levels of parents/family members of children with CIs were higher than parents/family members of children with normal hearing. In addition to the challenges posed by the pandemic, the difficulties that parents/family members of children with CIs experience in meeting their children's additional needs related to accessing education and hearing health care services may have contributed to increased stress levels.

Patient and Family Perspectives on Terms for Obesity.

Parent communication about body weight is a sensitive topic, but limited research has studied youth preferences for words used to talk about their weight with parents. We assessed perspectives of weight-based terminology in 2 racially/ethnically diverse samples of youth and parents. We collected online survey data from 2 panel survey samples between September and December 2021: youth aged 10 to 17 years (n = 2032) and parents of youth aged 10 to 17 years (n = 1936). Participants rated 27 different terms and phrases to describe body weight; parents reported on their usage of this terminology and youth reported their preferences for and emotional responses to terminology. Patterns were examined across sex, race/ethnicity, sexual orientation, and weight status. Youth reported preferences for words such as "healthy weight" and dislike of terms such as "obese," "fat," and "large," which induced feelings of sadness, shame, and embarrassment. Differences in youth preferences and emotional reactions were present across sex, sexual orientation, race/ethnicity, and weight status. This included a general pattern of lower preference ratings among girls (versus boys) and sexual minority (versus heterosexual) youth, and stronger preferences for words such as "thick" or "curvy" among racial/ethnic minority, sexual minority, and higher-weight youth. Use of most weight terms was higher among fathers compared with mothers, and by Hispanic/Latinx parents compared with white and Black/African American parents. Our findings underscore diversity of youth preferences and the need for individualized approaches that support effective parent and youth communication by using their preferred terms when discussing weight-related health.

"Opening up a well of emotions": A qualitative study of men's emotional experiences in the transition to fatherhood.

To explore the emotional changes and reactions men experience in their transition to fatherhood. This study used a qualitative design. Data were collected through in-depth interviews with 13 Norwegian fathers. Through thematic analysis, three main themes were developed: (1) from self-focus to family perspective; (2) emotional vulnerability; and (3) from insecurity to self-assurance. The themes describe fathers' emotional process during the child's first year of life, ranging from positive feelings like affection and mastery, to challenging feelings like exclusion, jealousy and exhaustion. Many fathers describe taboos and shame over their own emotional reactions, although these can be considered a natural part of the postnatal period.

The cultural specificity of parent-infant interaction: Perspectives of urban middle-class and rural indigenous families in Costa Rica

Caregiver-infant interactions in Western middle class often take place in dyadic play settings, engaged in infant-initiated object stimulation, and surrounded by a positive emotional tone, reflecting a distal parenting style. With this study we aim to investigate whether the same conception of caregiver-infant interaction is embodied in the proximal parenting style. For this purpose, we compare the context and pattern of caregiver-infant interactions in two cultural groups in Costa Rica: Urban middle-class families in San José and rural indigenous Bribri families. Naturalistic observations and caregiver interviews revealed significant differences between the groups, with San José families resembling the Western middle-class interaction pattern. Among the Bribris, adult-child play is uncommon so that children interact with adults in primary care settings and with older siblings in play settings. Bribri interactions are further characterized by emotional neutrality. The groups did not differ in terms of body contact. Also, caregivers in both samples took the lead in interactions more often than infants. The results are discussed in the context of an autonomous-relational style as combining psychological autonomy and hierarchical relatedness. We argue that early childhood theories and intervention programs need to abandon the assumption that Western middle-class strategies are universal and recognize locally relevant patterns of caregiver-infant interaction.

Disengagement from early psychosis intervention services: an observational study informed by a survey of patient and family perspectives

Approximately one-third of patients with early psychosis disengage from services before the end of treatment. We sought to understand patient and family perspectives on early psychosis intervention (EPI) service engagement and use these findings to elucidate factors associated with early disengagement, defined as dropout from EPI in the first 9 months. Patients aged 16–29 referred to a large EPI program between July 2018-February 2020 and their family members were invited to complete a survey exploring facilitators and barriers to service engagement. A prospective chart review was conducted for 225 patients consecutively enrolled in the same EPI program, receiving the NAVIGATE model of coordinated specialty care, between July 2018-May 2019. We conducted a survival analysis, generating Kaplan–Meier curves depicting time to disengagement and Cox proportional hazards models to determine rate of disengagement controlling for demographic, clinical, and program factors. The survey was completed by 167 patients and 79 family members. The top endorsed engagement facilitator was related to the therapeutic relationship in both patients (36.5%) and families (43.0%). The top endorsed barrier to engagement was medication side effects in both patients (28.7%) and families (39.2%). In Cox proportional hazards models, medication nonadherence (HR = 2.37, 95% CI = 1.17–4.80) and use of individual psychotherapy (HR = .460, 95% CI = 0.220–0.962) were associated with early disengagement, but some of the health equity factors expected to affect engagement were not. Findings suggest that delivery of standardized treatment may buffer the effects of health disparities on service disengagement in early psychosis.

Explaining job satisfaction through the use of work–familybenefits and their impact on the employee’s family context

PurposeThis study analyses the relationship between the use of work–family benefits and job satisfaction (JS). Furthermore, it proposes that work-to-family conflict (WFC) and work-to-family enrichment (WFE) play a mediating role in this relationship. The purpose of this paper is to address these issues.Design/methodology/approachData are gathered from 1,051 employees of Colombian organisations. Partial least squares path modelling is used.FindingsThe results show that the perception of WFE to a greater extent and the WFC perception, to a lesser extent, are significant mediators in the relationship between the use of benefits and JS.Practical implicationsThis study justifies investments and initiatives on the adoption and promotion of work–family benefits. Moreover, it provides practical clues on how to boost JS: WFC and WFE are variables to be considered.Originality/valueThis study proposes a multiple mediation model to analyse the relationship between the actual use of work–family benefits and JS from a family perspective. It contributes to the literature in examining antecedents of JS, highlighting the role of WFE.

Exploring the routine vaccination experience of Australian autistic children and their families: A qualitative study

Autistic children, adolescents and their younger siblings are less likely to be fully vaccinated compared to their peers in the general population. A focus on the influence of the unfounded link between the measles, mumps and rubella (MMR) vaccine and autism has distracted from consideration of unique family experiences and autistic-child related factors, such as emotional and behavioural differences, that may influence caregivers’ vaccination decisions. Without an understanding of the unique challenges and experiences of families with autistic children along the vaccination journey, the scope for appropriate, targeted interventions to support them is limited. To address this gap, in this qualitative research study we explored factors that impact the vaccination journey for autistic children and their families in an Australian context. Participants included 16 caregivers (15 mothers; 1 father) of 25 children who had a diagnosis of autism. Seven families had multiple autistic children. Participants shared their perceptions, experiences, and anticipation related to childhood vaccinations and vaccinating their autistic child and their siblings. Conducting thematic analysis, we identified four themes, comprising eight subthemes. The primary themes were 1) caregiver upskilling and self-assurance, 2) acknowledging unique differences amongst autistic children, 3) trouble behind and trouble ahead, and 4) managing sensory overload. Through these themes, we describe the unique needs of autistic children and their families with regard to emotional and sensory aspects of the vaccination visit across settings. We conclude by making recommendations for adaptation of vaccination services to incorporate the autistic perspective and lived experiences of families of autistic children.

Family Presence on Rounds in Adult Critical Care: A Scoping Review.

Ovid Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane Library, and PubMed databases were last searched on January 28, 2022. Studies published during the COVID-19 pandemic were included. Studies involving family presence during rounds that included family or healthcare provider perspectives or outcomes were selected. There were no limitations on study design. Qualitative and quantitative family and provider perspectives, barriers and challenges to family presence, and study outcomes were extracted from studies. The JBI Manual for Evidence Synthesis published guidelines were followed. There were 16 studies included. Family reported family presence on rounds as a means of information transfer and an opportunity to ask care-related questions. Family presence on rounds was associated with increased family satisfaction with care, physician comfort, and improved physician-family relationship. Healthcare providers reported a positive perception of family presence on rounds but were concerned about patient confidentiality and perceived efficacy of rounds. Family presence was found to increase rounding time and was felt to negatively impact teaching and opportunities for academic discussions. Family presence on rounds has potential advantages for family and healthcare providers, but important challenges exist. Further studies are needed to understand how to best implement family presence on adult ICU rounds.