Assessing HeartSong as a Neonatal Music Therapy Intervention: A Qualitative Study on Personal and Professional Caregivers' Perspectives
Infant, Newborn; Child; Bereavement; Intensive Care Units, Neonatal; Interpersonal Relations; Attitude of Health Personnel; Qualitative Studies; Human; Support, Psychosocial; Music Therapy; Heart Rate; Telephone; Parental Attitudes; Memory; Thematic Analysis; Parental Role; Caregiver Attitudes; Semi-Structured Interview; In Infancy and Childhood; Attitude to Medical Treatment; Extended Family; Singing
Abstract Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking. Purpose: This survey study evaluates the HeartSong music therapy intervention from parent and staff perspectives. Methods: A qualitative study assessing inclusion of HeartSong for family neonatal intensive care unit (NICU) care surveyed 10 professional caregivers comprising medical and psychosocial NICU teams anonymously reflecting their impressions of the intervention. Digital survey of parents/guardians contacted through semistructured phone interviews relayed impressions of recordings: subsequent setup, Song of Kin selection, and use of HeartSong, including thoughts/feelings about it as an intervention. Results: Professional and personal caregivers valued the HeartSong intervention for bereavement support, family support, including parental, extended family/infant support, and to enhance bonding. Emergent themes: memory-making, connectedness/closeness, support of parent role, processing mental health needs of stressful NICU days, and subsequent plans for lifelong HeartSong use. Therapeutic experience was named as a crucial intervention aspect and participants recommended the HeartSong as a viable, accessible NICU intervention. Implications for practice and research: HeartSong's use showed efficacy as a clinical NICU music therapy intervention for families of critically ill and extremely preterm infants, when provided by trained, specialized, board-certified music therapists. Future research focusing on HeartSong in other NICU populations might benefit infants with cardiac disease, parental stress, and anxiety attending to parent-infant bonding. Costs and time benefits related to investment are needed before implementation is considered.
van Dokkum NH; Fagan LJ; Cullen M; Loewy JV
Advances in Neonatal Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/anc.0000000000001068" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000001068</a>
Disputes over Diagnosing Death: Is It Ethical to Test for Death by Neurologic Criteria over Parental Objection?
Diagnosis; Female; Child Preschool; Ethics Medical; Intracranial Pressure; Parental Attitudes; Brain Death; Dissent and Disputes; Neurologic Examination; Consent; Ethical Issues; Resuscitation Cardiopulmonary
The article focuses on unpredictable patients diagnosis with death by neurological criteria (DNC) and mentions harm caused by overriding parent's denial in case of Maddie Reece who died of drowning. Topics discussed include team helped to understand perspective of patients through parental objection, trust between team and family promoted by testing for DNC, and empathy offered to parents of Maddie in their grief.
Eisenberg LR
The American Journal of Bioethics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/15265161.2023.2146408" target="_blank" rel="noreferrer noopener">10.1080/15265161.2023.2146408</a>
Parents' attitudes towards a difficult situation resulting from the chronic disease of their child
Adaptation; Adolescent; Adult; Attitude to Health; Child; children; chronic disease; difficult situation; Female; Humans; Male; Middle Aged; paediatric patient; parental attitudes; parents; Parents/psychology; Poland; Preschool; Psychological
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting from a child's chronic illness. MATERIAL AND METHODS: The study involved randomly selected parents of children with chronic diseases (N=107). The study was carried out at the Dental Clinic of the 'Little Prince' Children's Hospice in Lublin. RESULTS: The study revealed that for parents a difficult life situation is mainly associated with the disability of a family member or a friend, whereas the action approach is the most frequently chosen attitude towards a child's chronic disease. In the examined group of parents, a significant correlation was observed between the age of the parents and the choice of a specific parental attitude towards the child's chronic disease (in terms of intellectual approach). However, no significant correlations were found between the parents' place of residence and the choice of a specific parental attitude towards the chronic disease of a child. CONCLUSIONS: During the diagnosis of chronically ill children, parents should also be educated in this regard. Therapy and psychological help, as well as directing parents to relevant support groups, organizations or associations, will prove immensely valuable while coping with a difficult life situation.
Guz E; Brodowicz-Król M; Kulbaka E; Bartoszuk-Popko M; Lutomski P
Annals of Agricultural and Environmental Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">10.26444/aaem/119085</a>
Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Adolescence; Child; Communication; Compassion; Conceptual Framework; Coping; Family Centered Care; Male; Palliative Care; Parental Attitudes; Parenting; Parents; Pediatric Care; Personality; Professional-Family Relations; Social Identity; Stress; Support; Theoretical models
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty. Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role. Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child. Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
Weaver MS; Hinds PS; Kellas JK; Hecht ML
Journal of Palliative Medicine
2021
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<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0131</a>
The Experiences of Bereaved Parents After the Loss of a Child to Cancer: A Qualitative Metasynthesis
Child; Bereavement; Human; Qualitative Studies; Parental Attitudes; Life Experiences; Meta Synthesis; Childhood Neoplasms – Mortality; Death – Psychosocial Factors – In Infancy and Childhood; Parents – Psychosocial Factors
This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were independently assessed by two reviewers. Thirty-one articles were selected for full-text reading and assessed for eligibility; a total of 14 articles were included in the final sample and submitted to quality appraisal. The software NVivo® was used to organize the data and support the thematic analysis procedures. Two analytical themes were constructed: (1) losing a child and facing a rupture in identity and sense of life and (2) surviving grief and reengaging in life. The grief process was dynamic, continuous, and begun before the death of the child. Fathers and mothers reacted differently to the loss and experience of grief. The loss of a child definitively changed the parents' life and caused identity crisis and loss of life's purpose. During the process of survival, parents constructed new meanings that helped them cope with grief; they used strategies that allowed them to recover their sense of purpose in life. Synthesizing the experience of bereaved parents is essential to improve the support families of children with advanced cancer receive to better cope with their suffering and loss, before and after the child's death.
Polita N B; de Montigny F; Neris R R; Alvarenga W de A; Silva-Rodrigues F M; Leite A C A B; Nascimento L C
Journal of Pediatric Oncology Nursing
2020
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<a href="http://doi.org/10.1177/1043454220944059" target="_blank" rel="noreferrer noopener">10.1177/1043454220944059</a>
Hospital Practices for Parents Following Perinatal Loss
Bereavement; Descriptive Statistics; Female; Funding Source; Grief; Hospitals – Turkey; Human; Infant Mortality – Psychosocial Factors – Turkey; Male; Midwives; Nurses; Parental Attitudes; Physicians; Psychosocial; Purposive Sample; Questionnaires; Support; Turkey
The aim of this study is to provide comprehensive and current information on hospital practices following perinatal death. The provinces with the highest number of hospitals in Turkey were selected for the study. To collect data, the questionnaire form of Canadian hospitals maternity policies and practices survey was sent to the appropriate respondents in hospitals. The study showed that encouraging parents to have photos of the deceased baby and preparing a remembrance pack were the most problematic issues and were not available at the majority of hospitals. The most common supportive practices in hospitals were the opportunity to see the deceased baby, assisting with funeral options and autopsies, and support for completing the necessary legal documents. The result indicated that hospitals implement varied practices in assisting the bereaved parents. The study recommended developing hospital policies and practices related to perinatal death and supporting families during their loss and grief.
Kalanlar B
Omega: Journal of Death & Dying
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222818803809" target="_blank" rel="noreferrer noopener">10.1177/0030222818803809</a>
Parents' attitudes towards a difficult situation resulting from the chronic disease of their child
Adaptation; Adolescent; Adult; Attitude to Health; Child; children; chronic disease; Chronic Disease/*psychology; difficult situation; Disabled Persons/psychology; Female; Humans; Male; Middle Aged; paediatric patient; parental attitudes; parents; Parents/*psychology; Poland; Preschool; Psychological
INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting from a child's chronic illness. MATERIAL AND METHODS: The study involved randomly selected parents of children with chronic diseases (N=107). The study was carried out at the Dental Clinic of the 'Little Prince' Children's Hospice in Lublin. RESULTS: The study revealed that for parents a difficult life situation is mainly associated with the disability of a family member or a friend, whereas the action approach is the most frequently chosen attitude towards a child's chronic disease. In the examined group of parents, a significant correlation was observed between the age of the parents and the choice of a specific parental attitude towards the child's chronic disease (in terms of intellectual approach). However, no significant correlations were found between the parents' place of residence and the choice of a specific parental attitude towards the chronic disease of a child. CONCLUSIONS: During the diagnosis of chronically ill children, parents should also be educated in this regard. Therapy and psychological help, as well as directing parents to relevant support groups, organizations or associations, will prove immensely valuable while coping with a difficult life situation.
Guz E; Brodowicz-Król M; Kulbaka E; Bartoszuk-Popko M; Lutomski P
Annals of Agricultural and Environmental Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.26444/aaem/119085" target="_blank" rel="noreferrer noopener">10.26444/aaem/119085</a>
Attachment to God as a Mediator of the Relationship Between Religious Affiliation and Adjustment to Child Loss
Adaptation; Attachment Behavior – Evaluation – In Middle Age; Child Mortality – Psychosocial Factors; Female; Grief – Evaluation; Human; Male; Middle Age; Models; Parental Attitudes; Psychological; Psychological – Evaluation – In Middle Age; Psychotherapy; Questionnaires; Religion and Psychology – Evaluation – In Middle Age
Objectives: The loss of a child is a traumatic life event. While bereavement research has examined the roles of both interpersonal attachment and religiosity in coping with loss, only a handful of studies have addressed the concept of attachment to God (ATG). The current study examined ATG's role as a mediator in the relationship between religious affiliation (RA) and adjustment to child loss. Method: Seventy-seven bereaved parents (68% women; average age, 55 years) were administrated questionnaires referring to RA, ATG, and adjustment to loss (Two-Track Bereavement Questionnaire-TTBQ\_{7}{0}{)}. Results: The hypothesized mediation model was confirmed. Conclusions: The findings highlight the need to examine internal religion-related variables, such as ATG, while addressing religion and loss. From a clinical perspective, the findings may help therapists implement culturally sensitive practice as a part of spiritually informed psychotherapy. Enhancing therapists' familiarity with the client's internal constructs will enable a better evaluation and accommodation of therapy when working with bereaved parents. Clinical Impact Statement: Internal religion-related variables, such as Attachment to God, are important while addressing religion in the context of loss. Attachment to God orientations mediate the effects of religious affiliation on the grief process. Therapists should implement culturally sensitive practice as a part of spiritually informed psychotherapy.
Frei-Landau R; Tuval-Mashiach R; Silberg T; Hasson-Ohayon I
Psychological Trauma: Theory, Research, Practice & Policy
2020
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<a href="http://doi.org/10.1037/tra0000499" target="_blank" rel="noreferrer noopener">10.1037/tra0000499</a>
African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study
Adult; Anticipatory Grieving; Anxiety; Bereavement; Blacks -- Psychosocial Factors; Comparative Studies; Depression; Descriptive Statistics; Female; Fetal Abnormalities -- Diagnosis; Funding Source; Health Status; Hispanics -- Psychosocial Factors; Human; Interviews; Male; Multimethod Studies; Palliative Care; Parental Attitudes; Patient Satisfaction; Perinatal Care; Perinatal Death -- Psychosocial Factors; Psychological Well-Being; Qualitative Studies; Quantitative Studies; Questionnaires; Scales; Self Report; Summated Rating Scaling; Surveys; Treatment Outcomes
Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear. This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes. Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed. Parents rated their general health close to good , physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer / stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds. Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC. • The impact of race and ethnicity on response to perinatal loss is not well known. • Perinatal death can have long-lasting, negative effect on the parents' health. • Perinatal palliative care exists for fetal life-limiting conditions. • The majority of parents reported worsening or new health problems after the loss. • Parents found that perinatal palliative care greatly improved their experience.
Côté-Arsenault D; Denney-Koelsch E M; McCoy T P; Kavanaugh K
Applied Nursing Research
2019
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<a href="http://doi.org/10.1016/j.apnr.2019.151200" target="_blank" rel="noreferrer noopener">10.1016/j.apnr.2019.151200</a>
Mortality in parents after the death of a child
Attitude to Death; Bereavement; Child Mortality; Genetics; Heart Diseases -- Mortality; Human; Life Expectancy; Middle Age; Mortality -- Risk Factors; Parental Attitudes; Peer Group; Public Health; Twins; United States
The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was analyzed to examine potential genetic confounding. We analyzed data from the Midlife in the United States (MIDUS) study. The primary sample consists of two groups of MIDUS 2 participants (2004–06); (1) parents who experienced the death of a child prior to MIDUS 2 (n = 451) and (2) comparison parents who had not experienced death of any children (n = 1804) (mean age = 63). We also analyzed 52 twin pairs in which one twin experienced the death of a child and 271 twin pairs in which both twins had all living children. Mortality status of parents was assessed in 2017. Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease. Analyses of the twin subsample revealed significantly lower concordance for early mortality among the pairs with a bereaved twin than among control twins, consistent with non-genetic effects. The findings suggest that the death of a child has lasting impacts on the risk of early mortality in bereaved parents. This study provides the first U.S. estimate of bereavement effects on mortality extending through the parents' full life course, with significant public health implications. In addition, analysis of concordance of early death rates in the twin subsample suggests the impact on mortality of parental bereavement, net of genetic factors. • 32% higher rate of mortality in bereaved parents than non-bereaved parents. • Parental mortality effect confirmed in twin sample. • Highest death rates from heart disease in bereaved parents.
Song J; Mailick M R; Greenberg J S; Floyd F J
Social Science & Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.socscimed.2019.112522" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2019.112522</a>
Parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder: a scoping review
Child; CINAHL Database; Cochrane Library; Decision Making; Embase; Emotions; Family; Human; Medline; Neuromuscular Diseases -- In Infancy and Childhood; Non-Drug; Parental Attitudes; Parents -- Psychosocial Factors; Physical Mobility; Physician's Role; Physiotherapy Evidence Database; Powered; Prescriptions; Psycinfo; Scoping Review; Walking; Wheelchairs
Purpose: To conduct a scoping review of the published evidence on parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder and clinicians' influence on timely wheelchair implementation. Method: Nine electronic databases and reference lists of all retrieved full-text articles were searched up to March 2017. Eligibility criteria included (1) at least one child participant with a neuromuscular disorder, (2) power wheelchair as an intervention, and (3) qualitative, quantitative or mixed methods parent-reported outcomes related to power wheelchair equipment. Results: None of the 67 eligible studies examined parental perceptions of wheelchair prescription as a primary aim, and only 10 studies included children with a neuromuscular disorder. Parents reported their own emotional responses including grief and loss, emphasis on their child's walking and lack of accessibility as key barriers to power wheelchair prescription. Clinicians' perspectives on walking and powered mobility influenced parental decision-making regarding power wheelchair use for their child. Conclusion: Parents' experiences of initial wheelchair prescription have not been explored in existing literature. Clinicians' understanding of the benefits of power wheelchair equipment, particularly in the context of progression of neuromuscular disorders, is critical to facilitating timely wheelchair prescription with children. Condition-specific evidence is urgently needed to inform and support multidisciplinary management of children and their families. It is important that rehabilitation professionals recognize parental barriers to initial power wheelchair prescription, such as strong emotional responses, an emphasis on their child's walking and lack of access. Clinicians' perspectives on walking and powered mobility may influence parental decision-making regarding engagement in power wheelchair prescription and rehabilitation. It is critical that clinicians are aware of and actively educate families regarding the benefits of powered mobility to facilitate timely prescription and support physical and psychological adjustment.
Paguinto S G; Kasparian N A; Bray P; Farrar M
Disability & Rehabilitation
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/09638288.2018.1474496" target="_blank" rel="noreferrer noopener">10.1080/09638288.2018.1474496</a>
Parental Perspectives on Roles in End-of-Life Decision Making in the Pediatric Intensive Care Unit: An Integrative Review
Child; CINAHL Database; Decision Making; Health Personnel; Human; Medline; Parental Attitudes; Parental Role; Professional Role; Psycinfo; PubMed; Systematic Review; United States; Intensive Care Units; Pediatric – United States; Terminal Care – In Infancy and Childhood
Little is known about how parents perceive their role or the role of health care providers (HCPs) during end-of-life decision making (EOL DM) in the context of the pediatric intensive care unit (PICU). The authors searched CINAHL, PubMed, Ovid Medline, Web of Science, Social Science Database, PsycINFO, and Google scholar for English language studies performed in the United States related to parental perception of parental or HCP roles in EOL DM in the PICU since 2008. Eleven studies of parents and health care providers (HCPs) of critically ill children in the PICU and/or receiving inpatient pediatric palliative care, and bereaved parents of PICU patients. Most parents reported belief that EOL DM is within the domain of parental role, a minority felt it was a physician's responsibility. Parental EOL DM is rooted more firmly in emotion and perception and a desire to be a 'good parent' to a child at EOL in the way they see fit than HCP recommendations or 'medical facts'. Parents need HCPs to treat them as allies, communicate well, and be trustworthy. Role conflict may exist between parents and HCPs who are prioritizing different attributes of the parental role. The role of the nurse in support of parental role in the PICU is not well-elucidated in the extant literature. Future research should focus on what parents need from HCPs, especially nurses, to support their parental role, and factors that facilitate the development of trust and good communication. • Little is known about PICU parental role perception in end of life decision making. • Role alteration is a stressor with negative sequelae for parents in the PICU. • Majority of parents report decision making is a means of parental role fulfillment. • Health care professionals must be trustworthy allies who communicate well. • The role of the PICU nurse in supporting parental role is poorly explicated.
Bennett Rachel A; LeBaron V T
Journal of Pediatric Nursing
2019
<a href="http://doi.org/10.1016/j.pedn.2019.02.029" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2019.02.029</a>
The Long-Term Care Experiences and Care Needs of Parents Caring for Children With Adrenoleukodystrophy
Needs Assessment; Descriptive Research; Hospice Care; Human; Interviews; Helplessness Learned; Guilt; Psychosocial Aspects of Illness; Qualitative Studies; Parental Attitudes; Individualized Medicine; Long Term Care; Peroxisomal Disorders -- Psychosocial Factors
Background: Children suffering from adrenoleukodystrophy (ALD) requires life-long care. Little is known about the care needs of parents of ALD children at different stages of their disease. Purpose: The purpose of this study was to understand the long-term care experiences and care needs of parents caring for their ALD children. Methods: A descriptive qualitative study with 7 in-depth interviews was conducted with parents. Results: The results of these care experiences were distinguished into three phases: "pathogenesis to diagnosis", "rapid deterioration of physiological functions", and "bedridden until the death". The long-term care experiences revealed five themes, including "chaos and helplessness to seek medical attention then being forced to accept", "self-accusation and guilt", "strengthening parents' toughness", "seizing the moment and facing the future", and "accompanying children through life without pain". Within the three phases, the care needs comprised the three themes of "integrating resources and providing immediate care", "obtaining information and support regarding ALD rapidly", and "establishing individualized long-term care". Conclusion/Implication for Practice: This study revealed the long-term care experiences and care needs of the parents of ALD children. Providing individualized care, nursing instruction, and telephone consultation as well as connecting case managers with the hospice-care team will help facilitate and meet the care needs of these parents.
Jui-Chun F; Wei-Wen W U; Miao-Ju C; Shu-Yuan L; Su-Fen C
Journal of Nursing
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.6224/JN.201902_66(1).05" target="_blank" rel="noreferrer noopener"> 10.6224/JN.201902_66(1).05</a>
Care of the Bereaved Mother
Quality of Health Care; Human; Interviews; Nurse-Patient Relations; Parental Attitudes; Support Psychosocial; Mothers -- Psychosocial Factors; Bereavement -- Evaluation; Grief -- Evaluation; Neonatal Intensive Care Nursing -- Education; Nursing Role; Patient Centered Care; Perinatal Death -- Psychosocial Factors; Support Groups
Purpose: Caring for the bereaved mother can be a challenging undertaking for healthcare professionals who unless have suffered a similar loss, can find it difficult to relate with bereaved parents. The purpose of this DNP project is to research grief and bereavement to better understand the parental bereavement experience and to develop an education lesson for MBU nurses caring for bereaved patients. It is essential to provide nurses with insight into the bereavement experience of parents who have suffered the loss of a child, so they can provide support that validates the parents' grief and helps facilitate spiritual, emotional, or cultural rituals. Appropriate interventions can improve quality of care and promote healing. Method: The project was implemented in collaboration with the NICU nursery, the NICU nursing staff, and the parents' bereavement support group coordinator. The goal was to research the bereavement experience of the parents, but more specifically the mother, through evidencebased research, interviews with NICU nurses of their interaction with bereaved parents, review of the existing bereavement protocol in the hospital, and observing a parents' bereavement support group to hear firsthand accounts of parents' experiences and perceptions of their nursing care by healthcare professionals. This gathered data was then structured into an education lesson for the nurses of the MBU. Findings: The education lesson was positively reviewed by the stakeholders. Their feedback stated the information was relevant and brought awareness and insight for nurses caring for these vulnerable patients during a difficult time. The coordinator of the parents' bereavement support group suggested the lesson would be beneficial for newly hired nurses during orientation. Clinical Relevance: Through education, nurses gain knowledge and an understanding of what their role is in the bereavement process of the mother who has suffered an unexpected perinatal loss. Learning to foster a caring and trusting relationship with patients creates a safe environment and forms a partnership with patients, which thus results in appropriate interventions that meet the specific needs of the mother. This also facilitates the development of an individualized plan of care that provides support, comfort and guidance through the bereavement process. Guiding parents through the bereavement process is an essential component of care that contributes to normal progression through the stages of grief and promotes wellbeing.
Rocio GI
Care Of The Bereaved Mother
2018
A Systematic Review of Race/Ethnicity and Parental Treatment Decision-Making.
Caregivers; Clinical; Databases; Decision Making; Ethnic Groups; Health Resource Utilization; Human; Parental Attitudes; Patient Compliance; Pediatrics; Physician Attitudes; Race Factors; Systematic Review; Terminally Ill Patients
Patient race/ethnicity affects health care utilization, provider trust, and treatment choice. It is uncertain how these influences affect pediatric care. We performed a systematic review (PubMed, Scopus, Web of Science, PsycINFO, Cochrane, and Embase) for articles examining race/ethnicity and parental treatment decision-making, adhering to PRISMA methodology. A total of 9200 studies were identified, and 17 met inclusion criteria. Studies focused on treatment decisions concerning end-of-life care, human papillomavirus vaccination, urological surgery, medication regimens, and dental care. Findings were not uniform between studies; however, pooled results showed (1) racial/ethnic minorities tended to prefer more aggressive end-of-life care; (2) familial tradition of neonatal circumcision influenced the decision to circumcise; and (3) non-Hispanic Whites were less likely to pursue human papillomavirus vaccination but more likely to complete the vaccine series if initiated. The paucity of studies precluded overarching findings regarding the influence of race/ethnicity on parental treatment decisions. Further investigation may improve family-centered communication, parent engagement, and shared decision-making.
Harris VC; Links AR; Walsh J; Schoo DP; Lee AH; Tunkel DE; Boss EF
Clinical Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1177/0009922818788307" target="_blank" rel="noreferrer noopener">10.1177/0009922818788307</a>
Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Palliative Care; Decision Making; Intensive Care Units; Referral and Consultation; Mutation; Child; Male; Pain Management; Intellectual Disability; Health Education; Parental Attitudes; Pediatric; Pediatric Care; Connective Tissue Diseases Diagnosis; Connective Tissue Diseases Familial and Genetic In Infancy and Childhood; Connective Tissue Diseases Symptoms; Connective Tissue Diseases Therapy In Infancy and Childhood; Dyspnea Drug Therapy; Face Pathology; Family Education; Fibrosis; Morphine Therapeutic Use; Clinical; Muscle; Skeletal Abnormalities
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children's Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.
Vadeboncoeur C; McHardy M
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3417</a>
Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the Dual-Process Model
This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and recovery for the child. After the diagnosis, parents experienced intense loss (LO), but focused upon restoration-orientated tasks (RO) to support their child. Over time, most parents employed a healthy oscillation between LO coping and RO coping, with waves of grief and with some grieving suppressed. There are some specific grief and coping and gender patterns employed by parents
Cantwell-Bartl A
Death Studies
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07481187.2017.1407380" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1407380</a>
Research & commentary: parents' experience of inflammatory bowel disease
Child; Female; Male; Adult; Focus Groups; Interviews; ICU Decision Making; Support; psychosocial; Purposive Sample; Qualitative Studies; Family Coping; Inflammatory Bowel Diseases--Psychosocial Factors; Parental Attitudes
http://search.ebscohost.com/login.aspx?direct=true&db=c8h&AN=2003063190&site=ehost-live
Dampier S
Paediatric Nursing
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article