Chronic grief: experiences of working parents of children with chronic illness

Parents of children with chronic illness experience multiple stressors associated with their numerous roles. For parents who are working full time and caring for a child with chronic illness, the stressors related to managing work and caring responsibilities are magnified. Although the impact of caring for a child with chronic illness has been widely investigated, the literature reveals a paucity of research on the experiences of parents who are also in full time employment. This paper shares qualitative findings of a study involving interviews of twelve parents who were working full time while caring for a child with chronic illness. Data was collected through in-depth semi structured interviews and thematic analysis was then used to develop and categorise themes. Two intertwined themes are reported: (1) grief and (2) dealing with professionals. In this study, parents revealed the chronic grief they experienced in relation to their child's condition, which often recurred at various stages of the child's illness. The child's initial diagnosis was found to be the most stressful part of the grieving process, with most feeling their voices as parents were not being heard or valued by health professionals at this time. This affected parents' confidence in the health care system and triggered the re-emergence of grief, aggravating an already stressful situation. The findings illustrate that the grief experienced by these parents can be exacerbated by their dealings with health professionals. Implications for various health professionals are drawn from the findings in order to highlight avenues where guidance and support can be provided to these parents.     

Improving mental health outcomes of parents of infants treated in neonatal intensive care units: A scoping review

Parents of infants who require neonatal intensive care unit (NICU) hospitalization encounter stressors that place them at a higher risk of developing a mental health issue during and after NICU discharge. This population is often underdiagnosed, leading to potential detrimental effects on parenting behaviours, parent/infant bonding, and child neurodevelopment. This review explores what mental health issues parents experience during and after NICU discharge, what mental health resources are currently available, what mental health screening tools are used, and what factors place NICU parents at an increased risk of developing a mental health issue. The review revealed that mental health issues are not isolated; if a parent experiences psychological distress, it can progress to depression or post-traumatic stress disorder (PTSD) if left untreated. Psychotherapy most frequently contributed to a reduction in mental health symptoms, but was rarely offered beyond NICU discharge.     

Parent perceptions of the psychological functioning of their children diagnosed with pediatric motility disorders and that of family members.

The aim of our study was to characterize the parental perceptions of the behavioral and emotional functioning of their children and families coping with gastrointestinal motility disorders. The American Pseudo-obstruction and Hirschsprung's disease Society sponsored an educational meeting for parents of children afflicted with a variety of pediatric gastrointestinal motility disorders. During the conference, parents completed a questionnaire pertaining to the behavioral and emotional functioning of the afflicted child and other family members. Parents perceived that the child's illness was more difficult on the parents than on the affected child or their siblings. Also, parents perceived support from professionals, family, and friends increased after the children were diagnosed with pediatric gastrointestinal motility disorders. Parents worried most about the health and medical management of their afflicted child. The most common behavioral problem of the afflicted children was fear of separation, whereas the most common behavioral problem of their siblings was jealousy. The majority of referrals to mental health professionals resulted from parental emotional problems or marital discord.     

The experience of stress in parents of children hospitalized with long-term disabilities

This paper discusses parents' perceptions of their stress when their children are hospitalized with long-term disabilities. The study used a qualitative method. Data were collected with 40 parents through in-hospital interviews, and were analysed using the method of constant, comparative analysis. Parents' own interpretation of their stress experience is considered in relation to their perception of their role. The data suggest that the hospitalization of a child requires parents to make changes in their usual parenting role. In describing the nature of the changes required, parents identified the need to understand the illness experience; become familiar with the hospital environment; adapt to their changing relationship with the child and other family members; and negotiate with health professionals about their child's care. Verbatim accounts are used in this paper to illustrate parents' interpretations of their hospital experience. Parents perceive their role in their hospitalized child's care differently than health professionals do, and it would appear that much parental stress is attributable to the 'space' between health care workers' understanding of parents' experience, and parents' own comprehension. If nurses understood parents' own perception of their hospital-related stress better, more effective nursing care could be developed. Further research is needed in this important area.     

Supportive and palliative care needs of families of children who die from cancer: an Australian study

OBJECTIVE: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. DESIGN: A qualitative study with semi-structured interviews. PARTICIPANTS: 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Setting: Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. CONCLUSIONS: There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.     

‘Canaries in the mine’. Parents of adult children with schizophrenia: An integrative review of the literature

The purpose of this integrative review was to evaluate the current state of knowledge of parents who have adult children diagnosed with schizophrenia and their relationship with mental health professionals. Findings indicated that parents (primarily mothers) believed they intuitively knew when their adult children were becoming unwell and that they doggedly pursued connections with mental health care providers. Five themes were evident in the literature: trusting your instincts, feeling dismissed and devalued, making connections and making concessions, living with distress and sorrow, and becoming your own health‐care provider. The implications of the findings on mental health nursing practice indicate that professional family relationships were not ideal, and that parents wanted to improve these relationships. Parents wanted health‐care professionals to respond to their requests for help for both their children and for themselves, and wanted to be able to help the mental health team to help their adult children.     

Seeking and obtaining mental health services: what do parents expect?

This study examined parents' expectations about seeking and obtaining mental health care. Using the Expectations of Mental Health Care survey, structured interviews were conducted with 235 parents with children between the ages of 5 and 19; most were African American. Expectations were assessed in four areas: treatment effectiveness, provider/client relationship, accessibility of mental health services, and social and cultural factors, e.g., stigma. Parents reported a number of negative expectations, and black parents had significantly more negative expectations than white parents. The findings suggest that attitudes and expectations may influence parents' decision to seek mental health care for their child.     

Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol

Title.  Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol.
Aim.  This paper outlines the protocol for a study aimed at exploring parent's involvement during professional–parent interactions and decisions about their child's care in the context of suspected shunt malfunction.
Background.  Hydrocephalus is a long-term condition treated primarily by the insertion of a shunt that diverts fluid from the brain to another body compartment. Shunts frequently malfunction, and parents of children with shunted hydrocephalus are responsible for recognizing and responding to shunt complications. Parents feel that interactions with professionals when they seek healthcare advice for their child do always not encourage active participation in care decisions.
Methods.  The study design is based on qualitative methodologies: a combination of conversation analysis applied to consultation recordings of professional–parent interactions when a child is admitted to hospital with suspected shunt malfunction, and semi-structured follow-up interviews with the same participants within 2 weeks of the consultation.
Participants.  This is a prospective study and participants will be purposefully selected. Parents of children who have been admitted to hospital with suspected shunt malfunction and healthcare professionals responsible for the initial assessment of the child will be invited to participate.
Discussion.  The study will identify how decisions about a child's care are negotiated between parents and healthcare professionals at key stages of the care pathway. In addition, examining interactions between healthcare professionals and parents may identify approaches that support or hinder parents in contributing to the decision-making processes when they seek advice from healthcare professionals.     

Strategies for feeling secure influence parents' participation in care

This study investigates what makes parents of hospitalized children feel secure and factors influencing their level of participation. It also studies, whether the degree to which parents participate affects their child's pain and sleep during hospitalization. Questionnaires were distributed to a series of parents whose children were discharged from two paediatric surgical wards and one paediatric medical-surgical ward at two university hospitals in Sweden. Parental security is almost equally distributed among three given alternatives: security derived from trusting that professionals know how to take care of the child; security derived from having control over what is happening to the child; and security derived from being the one who knows the child best. Depending upon the strategy chosen, parents want to participate at different levels in their child's care. The results indicate a relationship between parental participation and their estimation of their child's pain. The study confirms a pattern, developed in a previous study, in how parents adopt different strategies affecting their participation during their child's hospitalization. Some parents who wanted to participate in more aspects of their child's care seemed to think that their child had less pain than parents who preferred more limited participation.     

Children visiting parents in inpatient psychiatric facilities: perspectives of parents, carers, and children

A significant number of clients utilizing mental health services will also be parents. Being a child of a parent with mental illness increases health risks for the child, and hospitalization of the parent has been identified as one of the most difficult times for children. However, few proactive measures have been taken to understand or provide for the needs of children visiting psychiatric inpatient facilities. The aim of this exploratory study was to identify the perspectives children, their parents, nominated carers, and clinicians from their experience of children visiting. The study used qualitative data gathered from interviews to develop an understanding of the issues. The purpose of this paper was to present the findings from parents, carers, and children. Children indicated that they wanted to visit and to remain involved with their parent, but that there was little support from staff. Families indicated that children visiting psychiatric inpatient facilities were not well managed, and they received little support about decisions around children visiting. The issue of children visiting psychiatric facilities when they have a parent who is an inpatient appears not to have been addressed in models of inpatient mental health care.     

Parents' perceptions of the quality of pediatric and perinatal end-of-life care

OBJECTIVE: The purpose of this study was to describe the quality of care provided before, at the time of, and following the death of an infant, child, or adolescent from the perspective of the parent, using a newly developed survey. SAMPLE AND METHODS: Parents were asked to participate in this study if they experienced a stillbirth or death of an infant/child/youth between 12 and 24 months prior to the beginning of the study. Thirty-eight families completed the survey with one of the researchers over the telephone or in person. Survey questions asked parents to report on the care received rather than rate how satisfied they were with care. RESULTS: Parents were reluctant to report negative occurrences in care they received, yet, when questioned further, nearly every parent could relate a particular event or person who had a negative impact on their experience. Parents identified communication between health professionals, relationships with health professionals, care at the time of death, and bereavement follow-up as problematic areas. CONCLUSION: There is room for improvement in the end-of-life care provided to infants, children and youth, and their families.     

Minor illness in children: parents' views and use of health services

Consultation rates in young children are high, and parents and carers of young children have reported feeling disempowered and anxious when their children display common symptoms. Parents have stated that more information would help them manage these symptoms appropriately. This focus group study explored how parents and carers of young children feel when their child displays common symptoms, what information they need to assist them in appropriate management, and to determine if they would value an educational intervention on the management of common symptoms. Findings showed that many parents sought help from families and friends following negative experiences of seeking advice from health professionals and many were wary of the information presented in health information leaflets produced by pharmaceutical companies. Parents and carers who took part in this study stated that they would value an educational intervention that would help them to appropriately manage common symptoms. They wanted to receive the information through interactive group sessions, led by a health visitor, with the inclusion of simple and non-product biased "take home" materials.     

Negotiation of parental roles within family-centred care: a review of the research

Aims and objectives. To review research published in the past 15 years about how children's nurses’ negotiate with parents in relation to family‐centred care. Background. Family‐centred care is a basic tenet of children's nursing and requires a process of negotiation between health professionals and the family, which results in shared decision‐making about what the child's care will be and who will provide this. The literature highlights inconsistencies in the degree to which nurses are willing to negotiate with parents and allow them to participate in decisions regarding care of their child. There is need to explore further the extent to which nurses communicate and negotiate shared care with children and their parents. Conclusions. Three themes emerged from this review of the literature relating to whether role negotiation occurred in practice, parental expectations of participation in their child's care and issues relating to power and control. Parents wanted to be involved in their child's care but found that nurses’ lack of communication and limited negotiation meant that this did not always occur. Nurses appeared to have clear ideas about what nursing care parents could be involved with and did not routinely negotiate with parents in this context. Relevance to clinical practice. For family‐centred care to be a reality nurses need to negotiate and communicate with children and their families effectively. Parents need to be able to negotiate with health staff what this participation will involve and to negotiate new roles for themselves in sharing care of their sick child. Parents should be involved in the decision‐making process. However, research suggests that a lack of effective communication, professional expectations and issues of power and control often inhibit open and mutual negotiation between families and nurses.     

Parental grieving and perceptions regarding health care professionals' interventions.

The death of a neonate, infant, or child is a tragedy that greatly impacts on many individuals' lives. Nurses and other health-care professionals provide care for not only the dying child but also the grieving parents and families. It is imperative that health care professionals are cognizant of the components and intensity of parental grieving and the critical role that they must assume in supporting bereaved parents prior to, at the time of, and after the child's death. The purpose of this study was to measure the intensity of parental grieving and collect information from bereaved parents regarding their perception of health care professionals' interventions. The results indicated that bereaved parents' intensity of grieving scores were generally higher than those reported on the TRIG norms. In response to The Bereavement Questionnaire, they were able to identify what health care professionals did or said that was helpful or unhelpful before, during, and after their child's death.     

白血病患儿父母的应激心理状况及心理需求

[目的]调查白血病患儿父母应激心理状况及心理需求情况。[方法]使用心理健康状况自评量表(SCL-90)及危重病人家庭需要量表(CCFNI),对白血病患儿父母应激心理状况及心理需求进行评估。[结果]白血病患儿父母存在抑郁、焦虑、恐惧心理;保证病人安全的需要、了解病人治疗与预后的需要及了解病人护理的需要是患儿父母最关注的3个需求,父母亲的受教育水平及收入对心理需求有影响。[结论]白血病患儿父母存在负性应激心理,有关疾病治疗及预后的知识需求是他们最希望获悉的信息。