The Effect of Family Presence During Resuscitation and Invasive Procedures on Patients and Families: An Umbrella Review

IntroductionThe concept of family presence during resuscitation and invasive procedures is a controversial issue and has not been universally adopted by health care providers. Owing to the sheer number of studies in this field, we conducted this umbrella study to provide an overview of this concept with the aim of investigating the impact of family presence on patients, families, and resuscitation and invasive procedures.MethodsIn this review, using the Joanna Briggs Institute levels of evidence umbrella methodology guidelines, the authors searched PubMed, Google Scholar, Embase, MEDLINE, Web of Science, Scopus, and the Cochrane database for systematic review and meta-analysis studies that evaluated the presence of family during resuscitation and invasive procedures without time limit until July 2020. The following key words were used for the search: family presence; family witness; parent presence; parent witness; and resuscitation.ResultsA total of 254 articles published between January 1967 and July 2020 were screened. Five articles (1 meta-analysis and 4 systematic reviews) met the inclusion criteria. The review showed that family presence during resuscitation or invasive procedures does not have negative effects on family members, patients, or the resuscitation or invasive intervention process. Family members focus on the patients, not the ongoing treatment. The presence of family members is beneficial for both family members and health care staff. None of the reviewed studies reported a negative effect on family members.DiscussionThe presence of parents and other immediate family members during resuscitation and invasive procedures has positive impacts on patients, families, and health care staff.     

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review

ContextChildren with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.ObjectiveWe conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains.MethodsWe searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization.ResultsWe screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication.ConclusionSPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.     

Necesidades de la familia en las unidades de cuidados intensivos. Revisión de la literatura

Admission to the Intensive Care Units (ICU) is perceived by both patients and their family as a stressful experience. This situation can cause shock, skepticism and anxiety in the patient's setting.ObjectiveTo analyze and present the needs of the family members of the critical patient.MethodologyA review was made of the literature in the following data bases: Pubmed, CINAHL, Cuiden and Cochrane Library. Furthermore, three journals specialized in Intensive Cares were reviewed.ResultsAfter including the articles that met the screening criteria, 30 articles were finally selected. Of these, 11 were reviews of the literature, 7 qualitative studies and 12 more were quantitative investigations. Four groups of needs in the families were identified after the analysis of these articles, these being cognitive, emotional, social and practical.DiscussionOne of the main needs of the family is to receive better information from the professionals followed by the need for closeness with the ill family member. This review proposes that, in order to cover these needs, the information should be protocolized and the visiting hours should be made flexible. Furthermore, incorporation of two familial evaluation tools, the genogram and ecomap, is proposed.ConclusionsThis work has revealed the importance of having the Intensive Care nurses identify the needs of the family during the admission of the patient in the ICU in order to be able to provide help, support and counseling care that relieves the suffering of the families.     

Symptom care flowcharts: a case study

Parents who have a child with a life-limiting condition face the painful prospect of seeing their child's health deteriorate and of becoming involved on a practical level with increasingly complex care. An example of a child with a rare genetic disorder requiring palliative care is used to illustrate how one aspect of the support needs of parents can be met through the use of therapeutic flow charts. The case study shows how a symptom management flowchart was developed to help one family feel more confident in caring for their dying child. It enabled them to focus less on the illness and more on spending quality time as a family. The development of symptom care flowcharts enabled the professional team and parents to think through problems before they arose and to make joint decisions. They boosted the confidence of family and carers by providing them with clear information and advice. Flowcharts of this kind can help support parents and carers in ongoing situations where multiple carers are involved and the child's care needs change over time.     

Does witnessing resuscitation help parents come to terms with the death of their child? A review of the literature

The aim of this review is to determine if witnessed resuscitation helps parents come to terms with the death of their child. Witnessed resuscitation is a controversial subject. There is disagreement in the literature and the opinions of healthcare professionals, as to whether parents should be present during the resuscitation of their children. This is an international problem that occurs consistently, when caring for patients requiring resuscitation. Despite this, however, research indicates that the advantages of this form of resuscitation for parents far outweigh the disadvantages.Electronic searches of PubMed, CINAHL and OVID were performed, with a manual search of retrieved articles. Primary studies, which were included, examined parents’ views of witnessed resuscitation in children. Of 1038 articles, eight met the inclusion criteria. These included qualitative and quantitative studies, which explored whether parents wanted to be present. The benefits and detrimental effects were explored, in order to determine whether witnessed resuscitation helps parents come to terms with the death of their child.Of 1253 parents, 87.1% wanted to be present. All but one parent believed witnessing resuscitation should be the choice of the parent and all but one parent who was present would do so again indicating that witnessed resuscitation is beneficial to parents.Effective parental support is needed whatever their choice and policies need to be in place to support witnessed resuscitation. More research is required to establish the long term outcomes of witnessed resuscitation as no randomised controlled trials have yet been completed.     

Do the parents of the youth abusing substances need to be supported? A literature review study

BackgroundSubstance abuse negatively affects the youth who use substances, their families and especially their parents. The use of substances impairs the health of the youth and is linked to an increase in noncommunicable diseases. Parents become stressed and they need help. Parents fail to carry out daily plans and routines because they are not sure what the substance abuser can do or what can happen to the substance abuser. When the parents’ well-being is taken care of, they will be able to take care of their youth when they need help. Unfortunately, little is known about the psychosocial needs of the parents, especially when their child abuses substances.ObjectivesThis article aims to review the literature to explore the need for support for parents of youth abusing substances.MethodThe study adopted the narrative literature review (NLR) methodology. Literature was retrieved from the following databases and search engines: electronic databases, search engines and hand searches.ResultsSubstance abuse has been found to affect the youth abusing substances and their families negatively. The parents, being the most affected, need support. The involvement of health professionals can assist the parents in feeling supported.ConclusionParents need support programmes that will give support and strength to their existing abilities.ContributionFocusing on the support needs of the parents of youth abusing substances will help to ensure parents are supported and mentally healthy.     

Stress and Parents of Children with Autism: A Review of Literature

The purpose of this review is twofold. The first is to synthesize factors that impact parents’ experiences of caring for a child with autism spectrum disorder (ASD); the second is to identify factors that impact parental stress and parental decision-making to use autism services or not. Parents of children with ASD score higher on levels of stress than other groups of parents. The daily challenges of caring for the child are endless and effect all aspects of the child's care as well as the parent's mental health and ability to manage the needs of the child and family. Understanding more about the challenges parents face will provide direction for research, intervention development, and practice. Accordingly, a search was conducted using CINAHL and Medline. Inclusion criteria included articles available in full text, published in English, and focused on children with ASD distinct from other diagnoses, as well as parental experiences of caring for a child with ASD. Articles (N = 132) that met the inclusion criteria were summarized. Challenging aspects of the child's diagnosis and care are discussed, as well as the factors that impact parental stress and decision-making to use autism services. Recommendations for research and practice include interventional development related to early diagnosis, disparity, access to care, parental decision-making to use autism services, and parental stress management.     

Lived experiences of Jordanian mothers caring for a child with disability

Abstract

Purpose: Caring for a child with a disability in the family is associated with a major increase in care-giving demands and burden. This qualitative study explores the perspectives, challenges and adaptations of Jordanian mothers living with a child with disability.

Methods: Phenomenological qualitative tradition was utilized. Seven Jordanian mothers of children with disability were purposefully selected as having rich experiences for caring for a child with a disability. In-depth interviews were conducted using a semi-structured guide, audio-taped and transcribed verbatim. Interpretive phenomenological analysis was used to extract main themes and subthemes.

Results: Mothers’ experiences were reflected into four main themes: (1) increased perceived stigma, (2) fear for the future, (3) increased perceived care-giving burden and (4) adaptations to the child’s disability.

Conclusions: This study highlights key gaps in the provision of family-centered services for this population as well as multiple sociocultural issues impacting participation and quality of life. Healthcare professionals must deal with the child’s disability from a family-centered and cultural perspective.

• Implications for rehabilitation

• When therapists meet the whole family’s needs through a family-centered approach, the child with disability is less likely to be ignored, maltreated or abused.

• Family-centered practice adopts a sociocultural model which looks at the child from a wider point of view rather than just the disability itself. It requires therapists to review the context in which the child lives and address the specific needs of parents, siblings and other involved family members.

• Culture plays a huge role in shaping the family’s perspective on disability and has a huge impact and implications for service delivery and development, quality of life and participation for children with disability and their families.

• Rehabilitation professionals must accommodate their time schedules to provide families with the communication, education, advocacy and consultations needed.

     

Preparing the family for home tracheotomy care

Children with tracheotomy tubes are frequently cared for by nurses in critical care settings, as well as on general patient care units. These children require tracheotomies for a variety of reasons and often are ready to be discharged before they are ready to be decannulated. As a result, many children are cared for at home by their parents, other family members, or other care givers. Discharging a child home with a tracheotomy is a process that involves many people. The staff nurse plays a valuable role in providing education and support to the child and family. After discharge, otolaryngology nurse-clinicians provide some of the support and continuing education the families may need, while parents and school personnel assist the families with support in normalizing their lives and meeting the developmental needs of the child.     

Family Centered Practice During Pediatric Death in an Out of Hospital Setting

Objective: To understand effective ways for EMS providers to interact with distressed family members during a field intervention involving a recent or impending out-of-hospital (OOH) pediatric death. Methods: Eight focus groups with 98 EMS providers were conducted in urban and rural settings between November 2013 and March 2014. Sixty-eight providers also completed a short questionnaire about a specific event including demographics. Seventy-eight percent of providers were males, 13% were either African American or Hispanic, and the average number of years in EMS was 16 years. They were asked how team members managed the family during the response to a dying child, what was most helpful for families whose child suddenly and unexpectedly was dead in the OOH setting, and what follow up efforts with the family were effective. Results: The professional response by the EMS team was critical to family coping and getting necessary support. There were several critical competencies identified to help the family cope including: (1) that EMS provide excellent and expeditious care with seamless coordination, (2) allowing family to witness the resuscitation including the attempts to save the child's life, and (3) providing ongoing communication. Whether the child is removed from the scene or not, keeping the family appraised of what is happening and why is critical. Exclusion of families from the process in cases of suspected child abuse is not warranted. Giving tangible forms of support by calling friends, family, and clergy, along with allowing the family time with the child after death, giving emotional support, and follow-up gestures all help families cope. Conclusion: The study revealed effective ways for EMS providers to interact with distressed family members during an OOH pediatric death     

Engaging parents of hospitalized neonates during a pandemic

BackgroundEngaging families through patient- and family-centered care (PFCC), the NICU nurse upholds the core concepts providing holistic care. The novel coronavirus (COVID-19) pandemic altered the daily routine of visiting parents to hospitals around the nation, particularly for pediatric and neonatal populations.MethodsThis paper describes innovative strategies implemented in a large Level IV NICU to promote the core concepts of PFCC that ensured parent-infant bonding while limiting exposure to a pandemic infection, such as COVID-19.DiscussionStrategies discussed include virtual visits between parents and infants to promote bonding; virtual parent support groups to encourage information sharing; remote music therapy options which included take-home music kits; diaries, albums, and celebration boards to support participation; among others. Parent collaboration throughout implementation promoted partnership.ConclusionUtilizing a variety of unique and innovative approaches to promote PFCC strategies became a critical component of routine planning and care delivery for one large neonatal intensive care unit.     

Psychological care of children and family in the critical care setting

Admission to the critical care setting can be a traumatic experience for a child and his or her parents. Besides providing physical care, the nurses should assess the psychological and emotional responses of the children and their parents. By integrating the child's psychosocial development and the principles of family-centered care into critical care nursing, the impacts of emergency admission on hospitalized children and their families can be reduced in order to facilitate adaptation on the part of the families.     

Lived experiences with unmet supportive care needs in pediatric cancer: Perspective of Chinese children and their parents

ObjectiveUnmet supportive care needs(SCNs) impact pediatric cancer patients and their parents. This study aimed to explore the unmet SCNs from the perspective of Chinese children with cancer and their parents through lived experiences.MethodsThe data of this study was collected using face-to-face semi-structured interviews. The participants were recruited from the oncology units of three children’s hospitals in China’s cities (Shanghai, Guangzhou, and Hefei) from October 2020 to December 2021. Data were analyzed using Colaizzi’s seven-step phenomenological analysis method.ResultsEight pediatric cancer patients and twenty-four parents were enrolled in the study. Four main themes and eight subthemes (both children’s and parent’s perspectives) were generated: 1) meeting the ongoing needs along the cancer trajectory (can you tell me what comes next; our needs are growing); 2) communicating with a family focus (they only talk to my parents; let each family member have a voice); 3) providing care beyond the treatment (I am bigger than my body [the children’s needs for emotional consolidation and information about their prognosis]; there are things beyond treatment); 4) getting support from the community (I am not a monster [the children were unhappy about being treated differently]; we want to connect with the resources near us).ConclusionThis study revealed multiple unmet SCNs from the perspective of Chinese children with cancer and their parents. The findings call for comprehensive and in-depth supportive care beyond treatment, integration of the family member voice in pediatric cancer care, and a coordinated pediatric cancer support mechanism in the Chinese healthcare system.     

The experience of family caregivers caring for a terminal patient at home: A research review

IntroductionOne of the key aspects of the care of terminal patients is care delivered in their own home. Increasingly, the process of dying is moving from hospitals to homes. Although this process is directly related to the support of the social health environment, the involvement of family caregivers is essential. Given the impact that caring for a terminally ill family member has on people’s lives, it is necessary to comprehend their personal experience in a holistic way.ObjectiveTo reveal the experience of family caregivers who are caring for a terminal patient in their home.DesignA qualitative systematic review of articles published from 2000 to 2015 was conducted between March and September of 2015. The following databases were consulted: CINAHL, PubMed, PsycINFO, Cochrane Library, SciELO and Dialnet. After applying the selection criteria, 12 relevant studies were identified. Subsequently, two of the reviewers jointly performed a qualitative content analysis of them.ResultsThe analysis permitted the caregivers’ experiences to be grouped into five themes: 1) Learning the diagnosis: uncertainty about the future and the prospects of death; 2) Feeling the physical and emotional burden of care; 3) Experiencing a limited life; 4) Redefining the relationship with the person being cared for; and 5) Valuing the importance of the support of the environment.ConclusionsThis review shows that caring for a family member with advanced illness in the home has a great impact on the personal realm of the caregiver and in the relationship he or she maintains with the ill family member. Being involved in the process of dying translates into a prodigious physical and psychological effort, together with a substantial limitation on the normal development of their own life. Additionally, the caregiver must face and establish a new relationship with the family member, in accordance with the new ethos, without the help of a formal structure providing the necessary support. These results may help to focus attention on family caregiver needs and to develop the knowledge necessary to meet the current demands of end-of-life health care in the home.     

Opportunities for Palliative Care in Patients With Burn Injury—A Systematic Review

ContextPatients with significant burn injuries likely have palliative care needs.ObjectivesWe performed a systematic review of existing evidence concerning the palliative care needs of burn patients.MethodsThrough November 26, 2018, we systematically searched PubMed, CINAHL, Embase, Web of Science, and Scopus, using terms representing burn injuries and the eight domains of quality palliative care as outlined by the National Consensus Project for Quality Palliative Care. Eligible articles involved burn-injured patients treated with an intervention targeting at least one of the eight domains.ResultsOur searches yielded 7532 unique records, which led to 238 articles for full review and 88 studies that met inclusion criteria. Seventy-five studies addressed the domain physical aspects of care and merit a separate systematic review; 13 studies were included in our final review. Four of the seven domains—processes of care, psychologic symptoms, social aspects, and end of life—were addressed by studies but three domains—spiritual, cultural, or ethics—were unaddressed. Included studies highlight potential benefits from peridischarge self-care education programs, peer support, and group therapy in improving quality of life. In patients with severe injuries, end-of-life decision-making protocols were associated with increased utilization of comfort-focused treatments.ConclusionMost existing palliative care-related research in burn patients addresses interventions for physical symptoms with minimal literature concerning other domains. Opportunities exist for further research of palliative care in burn populations with emphasis on addressing interventions for all domains and better standardizing the language and outcomes for the palliative care interventions.     

Perceptions by Families of Emergency Medical Service Interventions During Imminent Pediatric Out-of-Hospital Death

Objective: To understand how family members view the ways Emergency Medical Services (EMS) and other first responders interact with distressed family members during an intervention involving a recent or impending pediatric death.

Methods: In depth interviews with 11 grieving parents of young children and survey results from 4 additional grieving parents of adult children were conducted as part of a larger study on effective ways for EMS providers to interact with distressed family members during a pediatric death in the field. The responses were analyzed using qualitative content analyses.

Results: Family reactions to the crisis and the professional response by first responders were critical to family coping and getting necessary support. There were several critical competencies identified to help the family cope including: (1) that first responders provide excellent and expeditious care with seamless coordination, (2) allowing family to witness the resuscitation including the attempts to save the child’s life, and (3) providing ongoing communication. Whether the child is removed from the scene or not, keeping the family apprised of what is happening and why is critical. Giving tangible forms of support by calling friends, family, and clergy, along with allowing the family time with the child after death, giving emotional support, and follow-up gestures all help families cope.

Conclusion: The study generated hypothetical ways for first responders to interact with distressed family members during an OOH pediatric death.