Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

Using Social Worlds Theory to Explore Influences on Community Nurses’ Experiences of Providing Out of Hours Paediatric Palliative Care

Abstract Background: Paediatric oncology palliative care in the community is rare and nationally there is a lack of standardisation of out of hours nursing service provision. Objectives: This paper seeks to explore influences on the experiences of paediatric nurses providing out of hours palliative care within the family home to children with cancer. The study used social worlds theory to aid identification and demonstration of the findings. Methods: Twelve community-based palliative cases were purposively selected from children with cancer treated at one regional centre. Tape-recorded interviews were undertaken with 54 health professionals (general practitioners, community nurses and allied health professionals) involved in providing their palliative care and five facilitated case discussions completed. Data analysis followed a grounded theory approach; chronological comparative data analysis identifying generated themes. Social worlds theory was used as a framework to examine the data. Results: Nurses’ experiences are shaped by their social world and those of the nursing team,child and family and the inter-professional team providing the care. The lack of a formalised service, sub-optimal inter-professional working and impact of social worlds influence the experience of the nurse. Conclusions: Social worlds theory provided a new perspective in understanding these experiences based within a paediatric palliative care setting, knowledge that can be used to inform service provision.

Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents

Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. Results: Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. Conclusions: Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members

What do GPs and Bereaved Parents Think About Paediatric Oncologists and Palliative Care?

Aim The aim of the study was to examine the experiences of bereaved parents and general practitioners (GPs) following the death of a child with cancer within the family home. This presenta-tion focuses on one of the findings; the parent and GP views on the hospital consultants’ involvement in the palliative care. Design A community based qualitative study.Setting West Midlands region, UK. Participants Purposeful sample of 18 GPs and 11 bereaved families. The sample was drawn from the families and GPs of children who had been treated for cancer at a regional childhood cancer centre and who subsequently died within the family home. Methods One-to-one semi-structured tape-recorded interviews were undertaken with GPs and bereaved parents following the death at home of a child with cancer. GPs were contacted three months after the death of the child and the parents at six months. Thematic analysis of the transcriptions was undertaken. Findings Parents described feeling abandoned at the transition to palliation when management of care transferred to the GP. Families did not perceive a seamless service of medical care between hospital and community. Where offered consultant contact was valued by families and GPs. Text and email were used by families as a means of asking the consultant questions. The GPs lacked role clarity where the consultant continued involvement in the care. Conclusions The transition to palliation and the transfer of care to community services needs to be sensitively and actively man-aged for the family and the GP. Medical care between tertiary andprimary care should be seen as a continuum. Improving GP: consultant communication could aid role clarity, identify mecha-nisms for support and advice, and promote the active engagement of the GP in the care. Exploring opportunities for integrated con-sultant: GP working could maximise mutual learning and support and enhance care provision. The level, access and duration of ongoing contact between consultants and families/GPs require clarity.

GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40–60 GPs will be involved in the QM. Findings Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.

Implementation science to expand an mHealth intervention for improving retention in care for women living with HIV and their children

Thesis (Ph.D.)--University of Washington, 2016-08

The role of emotions in value creation for families in pediatric health care

The purpose of this study was to analyze emotions related to a child’s critical illness from the perspective of the family and discuss the link those emotions might form with value creation. High quality service is of paramount importance in hospital care, especially when a child is diagnosed with critical illness. Through the analysis of patient family emotions and their triggers, the study was aiming to deepen the understanding of value creation for customer. Therefore, the research sought to find answers to the following three sub-questions: 1. What are the emotions experienced? 2. What triggers them? 3. How are the emotions linked to amelioration or aggravation of value for patient and family? The theoretical background of this research is built on two core concepts: emotions and value creation. As both concepts are wide and multifaceted, the research concentrates on viewing emotions from the applicable cognitive angle, identifying and categorizing emotions in a general level. Value creation is studied from the service perspective, discussing the possible relations between emotions and value creation. Moreover, the suitability of views regarding customer value co-creation to health care encounters is analyzed. Qualitative approach was selected as the most appropriate methodology for conducting the empirical research. The empirical data was collected from public blogs, for which a total of 18 blogs were reviewed. Five blogs were selected for the analysis, which had the intent of identifying the emotions experienced by patient families and deepening the knowledge of their role in value creation during health care service encounters. The empirical study of this research discovered a wide range of positive and negative emotions, which denotes that a severe life situation does not prevent the feeling of positive emotions. Furthermore, by combining the empirical findings to the theoretical background, this study concludes that recognizing and treating the patient family as a partner and value creator is essential. The high quality technical aspect of care is vital, but it is not the sole attribute for service quality, as the interpersonal communication plays a large role in the customer’s overall assessment of the health care performance. The patients and their families largely evaluate the service encounter based on their perceptions, thus emotions play a significant role. Depending on the service experience, value maybe created or destructed. Hence, this study posits emotion at the core of the service encounter, indicating towards the importance of active assessment of customer perceptions and the recognition of the emotional states

G181(P) Evaluation of a new e-health intervention in neonatal care : perspectives of parents and health professionals.

Aim This paper will report findings from the first phase of an evaluation of a new e-health intervention designed to allow mothers to ‘see’ their baby in neonatal care (NNU) when they are not able to be with them. The intervention, MyLittleOne, involves a web-camera being placed over the incubator in NNU, which transmits a real-time video wirelessly to a coupled tablet device at the mother’s bedside. Guided by the MRC Framework for the Development and Evaluation of Healthcare Interventions (MRC, 2008), the aim was to explore parent and professional views of the technology and make recommendations for its future development, use and evaluation. Methods A qualitative approach was adopted, guided by a critical realist perspective (McEvoy and Richards, 2003). The study took place in a Level 3 NNU in Scotland. Participants were recruited purposively and included parents (n = 33) and a range of health professionals working in neonatal and postnatal care (n = 21). The data were collected during semi-structured individual, paired and small group interviews and were analysed thematically using NVivo v10. Results The majority of parents and professionals spoke positively about MyLittleOne. Perceptions were that: use of the technology assisted bonding and responsiveness; it promoted the recovery process following birth; and, for mothers who wished to breast-feed, being able to see their baby on the tablet device encouraged the ‘let-down’ reflex. An additional benefit was that siblings and others who may not be able to visit the NNU were able to see the baby. In contrast, for a small number of mothers, viewing their baby remotely appeared to increase their levels of anxiety. Switching off the camera during a medical procedure and back on after the procedure was completed was found to be problematic, at times and in different ways, for both parents and professionals. Conclusions Findings from this preliminary evaluation will guide future developments of the technology, including its use in family homes following the mother’s discharge. The findings will also inform the design of a feasibility study and subsequent RCT to assess the impact of MyLittleOne on a range of psychological indicators of postnatal adjustment.

KANGAROO CARE: MATERNAL PERCEPTION OF THE EXPERIENCE IN THE NEONATAL INTENSIVE CARE UNIT

Objective: To investigate the maternal perception of the experience in the first phase of the Kangaroo Mother Care Method in the Neonatal Intensive Care Unit (NICU). Methods: Descriptive, exploratory and qualitative study, conducted in the period from August to October 2014, with 10 mothers of newborn preterm (NP) infants, who were admitted to the Maternity School Assis Chateaubriand (MEAC) in Fortaleza, Brazil, and had received skin-to-skin contact through the Kangaroo Care Method during hospitalization in the NICU. Data was collected by semi-structured interview, directed by guiding questions. Content analysis was used for processing the data, being established four categories: “The bond and the attachment”, “Maternal competence”, “The fear of losing the baby” and “The importance of the multidisciplinary team”. Results: The Kangaroo Care Method is a safe and pleasurable practice for mothers and relatives, in addition to providing social and psychoaffective benefits, found in the imagery of the method institutionalization and in the mothers’ experience when properly supported. The meanings of the maternal feelings of apprehension as a result of the first physical contact with the hospitalized child can be evidenced. Regarding the evaluation of its clinical practice, this method has provided better development of the newborn infant and a reduction in hospital stay. Conclusion: The study shows relevance, since the evidence of the maternal perception of this method supports its establishment as a mandatory practice in maternity hospitals, in view of the benefits to the mother and the neonate.

Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

Reactive Attachment Disorder in infants in foster care and associated mental health and cognitive functioning

Background: Reactive attachment disorder (RAD) has been described as one of the least researched and most poorly understood psychiatric disorders (Chaffin et al., 2006). Despite this, given what is known about maltreatment and attachment, it is likely that RAD has profound consequences for child development. Very little is known about the prevalence and stability of RAD symptoms over time. Until recently it has been difficult to investigate the presence of RAD due to limited measures for informing a diagnosis. However this study utilised a new observational tool Method: A cross sectional study design with a one-year follow-up explored RAD symptoms in maltreated infants in Scotland (n=55, age range= 16-62 months) and associated mental health and cognitive functioning. The study utilised the Rating of Inhibited Attachment Behavior Scale (Corval, et al., unpublished 2014) that has recently been developed by experts in the field along side The Disturbances of Attachment Interview (Smyke & Zeanah, 1999). Children were recruited as part of the BeST trial, whereby all infants who came in to the care of the local authority in Glasgow due to child protection concerns were invited to participate. The study sample was representative of the larger pool of data in terms of age, gender, mental health and cognitive functioning. Results: The sample was found to be representative of the population of maltreated children from which it was derived. Prevalence of RAD was found to be 7.3% (n=3, 95% CI [0.43 – 14.17]) at T1, when children are first placed in to foster care. At T2, following one year in improved care conditions, 4.3% (n=2, 95% CI [below 0 – 10.16]) met a borderline RAD diagnosis. Levels of observed RAD symptoms decreased significantly at T2 in comparison to T1 but carer reported symptoms of RAD did not. Children whose RAD symptoms did not improve were found to be significantly older and showed less prosocial behaviour. RAD was associated with some mental health and cognitive difficulties. Lower Verbal IQ and unexpectedly, prosocial behaviour were found to predict RAD symptoms. Conclusions: The preliminary findings have added to the developing understanding of RAD symptoms and associated difficulties however further exploration of RAD in larger samples would be invaluable.

Ethical aspects of children’s perceptions of information-giving in care

The aim of this study was to identify key aspects in the exchange of information and to determine how nurses communicate news to hospitalised children. For this study, we applied the critical incident technique with 30 children aged between 8 and 14 years. Data were collected in paediatric units in a hospital in Alicante (Spain) using participant observation and semi-structured interviews. The analysis yielded three main categories: the children’s reaction to the information, nursing staff behaviour as a key aspect in the exchange of information and communication of news as well as children’s experience. This article emphasises the need to promote children’s consent and participation in nursing interventions. An analysis of these aspects will verify whether children’s rights are being respected and taken into account in order to promote children’s well-being and adaptation to hospitalisation.

Parental feelings face to hospitalization of the child

The hospitalizatíon of a child carnes with it major changes, etther in the child's life or parent. lllness and hospttalizatíon constitute a crisis situation for both the child and the famHy as it incorporates financiai, psychotogical, relational and social changes. The purpose of this work and analyze the satísfactíon and parents' perception on the importance of nursing care during hospttalizatíon and feelings experienced by parents. Objectives: To know the opinions and feelings of the parents in relation to the admlsston of the child 1n the service of Pediatrics at North of Portugal. Methods: Integrated this study parents of chtldren hospttalized in the pediatric inpatíent at the Hospital Trás-os-Montes e alto Douro, Vila Real, whose children were in the service to at least more than 48 hours, In total 33 escorts that replied to the questionnaire. For such a study we chose the type quantitative deschptíve. We proceeded to collect data by conductíng a questíonnaire, and the results of it were drafted in the SPSS program through Quantitatíve model wtth exploratory qualitatíve approach. Results: The age ofthe partícipants is between the 21 and 46 years - old, 75. 8% of respondents were married, 78. 8% of chtldren was hospitalized in the first time. We conclude that the mother is who else accompanies the chtld in the hospital. We had positive feedback regarding the interactíon parent-nurses since many parents stressed the good relatíonship with the nursing team (It reported that "Nurses" and "Nurses and "auxiliaries" were who else helped them, with 30. 3% and 21. 2% respectively). The feelings more mentioned were: anxiety -21 answers, sadness-20, fear-15 and hope with 15. The conditions offered to the parents were considered goodfor60.6%.

Child Abuse and Mental Disorders in Iranian Adolescents

Background: Child abuse is a serious social health problem all over the world with important adverse effects. Objectives: The aim of this study was to extend our understanding of the relation between mental disorders and child abuse. Materials and Methods: The study was designed as a cross-sectional survey on 700 students in secondary schools using multiple cluster sampling in Yazd, Iran in 2013. We applied 2 self reported questionnaires: DASS (depression anxiety stress scales)-42 for assessing mental disorders (anxiety, stress and depression) and a standard self-reported valid and reliable questionnaire for recording child abuse information in neglect, psychological, physical and sexual domains. The collected data was analyzed using SPSS software. P-values < 0.05 were considered as significant. Results: There was a statically significant correlation between mental disorder and child abuse score (Spearman rho: 0.2; P-value < 0.001). The highest correlations between mental disorders and child abuse were found in psychological domain, Spearman’s rho coefficients were 0.46, 0.41 and 0.36 for depression, anxiety and stress respectively (P-value < 0.001). Based on the results of logistic regression for mental disorder, females, last born adolescents and subjects with drug or alcohol abuser parents had mental disorder odds of 3, 0.4 and 1.9 times compared to others; and severe psychological abuse, being severely neglected and having sexual abuse had odds 90, 1.6 and 1.5 respectively in another model. Conclusions: Programming for mandatory reporting of child abuse by physicians and all health care givers e.g. those attending schools or health centers, in order to prevent or reduce its detrimental effects is useful and success in preventing child abuse could lead to reductions in the prevalence of mental disorders.

A cross-sectional survey of 5-year-old children with non-syndromic unilateral cleft lip and palate:the Cleft Care UK study. Part 1: background and methodology

OBJECTIVES: We describe the methodology for a major study investigating the impact of reconfigured cleft care in the United Kingdom (UK) 15 years after an initial survey, detailed in the Clinical Standards Advisory Group (CSAG) report in 1998, had informed government recommendations on centralization. SETTING AND SAMPLE POPULATION: This is a UK multicentre cross-sectional study of 5-year-olds born with non-syndromic unilateral cleft lip and palate. Children born between 1 April 2005 and 31 March 2007 were seen in cleft centre audit clinics. MATERIALS AND METHODS: Consent was obtained for the collection of routine clinical measures (speech recordings, hearing, photographs, models, oral health, psychosocial factors) and anthropometric measures (height, weight, head circumference). The methodology for each clinical measure followed those of the earlier survey as closely as possible. RESULTS: We identified 359 eligible children and recruited 268 (74.7%) to the study. Eleven separate records for each child were collected at the audit clinics. In total, 2666 (90.4%) were collected from a potential 2948 records. The response rates for the self-reported questionnaires, completed at home, were 52.6% for the Health and Lifestyle Questionnaire and 52.2% for the Satisfaction with Service Questionnaire. CONCLUSIONS: Response rates and measures were similar to those achieved in the previous survey. There are practical, administrative and methodological challenges in repeating cross-sectional surveys 15 years apart and producing comparable data.