Parents' perceptions of care-giving to a child with attention deficit hyperactivity disorder: an exploratory study

Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral childhood disorder in which parental care-giving is found very stressful. Limited qualitative research is found on their care-giving experiences. This study aimed to explore Chinese parents' experiences of care-giving to a child with ADHD at home. It was conducted at one Child and Adolescent Mental Health Unit in Hong Kong using qualitative exploratory approach. A purposive sample of 12 parents was recruited. Semi-structured interviews were conducted, each lasting about one hour. Content analysis was used to analyze the data. From the interview data, four themes were identified, including: concept of the illness, barriers to child care in ADHD, psychological effects in care-giving, and positive aspects of care-giving. The parents indicated a variety of life problems and health concerns in care-giving. The findings may help nurses understand the perceptions and barriers towards parental care of a child with ADHD in a Chinese population and consider parents' educational needs in care-giving.     

A Dynamic Cycle of Familial Mental Illness

In this paper, we present A Dynamic Cycle of Familial Mental Illness; an innovative framework, which considers family members’ experiences and responses to mental illness. There is an acknowledged discourse noting parental experiences of mental illness alongside a growing body of knowledge acknowledging children's needs while living with parental mental illness. However, there is a paucity of literature that makes reference to the concept of familial mental illness and the cyclic interface of parental and child distress and symptoms. The model is supported by published research studies from several differing disciplines to demonstrate the relationship between parent and child experiences and to synthesise the published short- and longer-term possible impact of familial mental illness. An extensive search of the literature using recognised search engines, keywords and phrases has been undertaken, to generate an appropriate literature base for this work. This literature demonstrates how a child's possible emotional distancing as a response to parental mental illness could increase parental distress. A Dynamic Cycle of Familial Mental Illness adopts the underpinning philosophy of a Stress Vulnerability Model of Mental Illness, which assumes that predisposing factors and increased stress for a parent may have possible links to exacerbation of parental mental distress and symptomology. We advocate for further research of familial mental illness, and argue for a family approach to mental health assessment and treatment in mainstream health and social care sectors.     

Continuing bonds: a human response within paediatric palliative care

The concept of continuing bonds (CB) is a human response to health and illness within paediatric palliative care. This literature review aims to: define and explain the significance of CB; describe the history of the concept; critically analyze the literature related to CB; and make recommendations for future research. Exploration of CB as a response to life-threatening illness and to losing a child is significant in terms of improving care for children and their families living with life-threatening illness. This paper focuses on children with a life-threatening illness, but CB also needs to be studied with other populations, such as those with life-limiting conditions.     

The many roles of families in family-centered care--part V. Interview by Deborah Dokken

This article, the fifth of six in a series on roles for family members in family-centered care, focuses on the role of parents as educators of clinicians in the health care system. Two interviews highlight this role. The director of family services at a pediatric hospital, a parent of a child who suffered with a chronic illness, offers suggestions for institutions wanting to further develop this key role. This includes involving patient and family advisors at the "front end" of any initiative or new project; identifying champions (clinical staff, administrators, and patients/family members) for these roles within the institution; preparing family members for the educator role; following-up with thanks and feedback; and tracking successes of projects in which patient and family advisors participate. The father interviewed in this article describes the sense of fulfillment he experiences from teaching health care providers about child and family needs and the emotional side of care. He urges all parents to recognize the important education they can offer professionals when they both ask questions and share about their own child and family.     

Caring for a child with a progressive illness during the complex chronic phase: parents'experience of facing adversity

This qualitative study explored the day-to-day experiences of parents caring at home for a child with a progressive life-threatening illness at a certain point in their illness trajectory. This point in the trajectory is when the child lives with a complex chronic condition, and is in need of specialized and time-consuming care, but is not yet in a terminal phase. The naturalistic research design of phenomenology was chosen for the study's methodology. Parents'experiences of caring for their child were conceptualized as an ongoing process of 'facing adversity', as parents had continuously to redefine and then manage those changes resulting from the progressive nature of their child's condition. Concepts of normalization and chronic sorrow are considered in the conceptualization, as are the challenges of caregiving (particularly of mothers) who faced many hardships in their role, including the myriad of changes related to the increased burden of care. Implications for nursing practice are identified.     

Migration specific transitions and family care-giving

This qualitative study focuses on care-giving among Russo-German re-settlers. Since the early '90s, Russo-Germans have been increasingly allowed to return to Germany. Up to now, the phenomenon of care-giving in this group was little known. The meaning of family care-giving within this particular group of immigrants can only be understood by investigating the foundations of care, the kind of care given, and the ways of providing care. Using the Grounded Theory method, four data sets of 81 interviews have been conducted and analysed in Russia and Germany. Care-giving among Russo-German re-settlers is part of a system of comprehensive family care and support stemming from a collectivistically oriented family concept. Family care is taken for granted and experienced as a must. On account of their biographic experiences and the experiences of immigration, the caring behaviour of Russo-German re-settlers is not necessarily congruent with the caring behaviour practised in Germany, let alone the caring behaviour of professional carers. This has an impact on the utilization of professional support. In order to provide helpful and meaningful support professional carers have to take into account the whole system of family carers and to avoid the separation of the family.     

Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.     

Father-to-father support: Fathers of children with cancer share their experience

Fathers are important to the stability of the family and to the coping of mothers and their children when there is a child in treatment with cancer. The vulnerability they experience is stupefying and causes self-doubt, general worry, and frustration with the medical care they receive. Fathers' experiences are relatively unreported in the literature, and even less so, the experiences of fathers with children who have cancer. This research is based on two focus groups of five men each who spoke unabashedly for more than 2 hours about their grief, their struggle to come to terms with the diagnosis and the role strain, and role confusion they experienced as fathers and husbands. The findings could be described as reflecting the following themes: (1) impact on the provider role, (2) the emotional impact: I cry privately, (3) its the fight of our lives, (4) tag-team parenting, (5) hypervigilance, (6) that place is scary!, and (7) what happens next—coping and moving on. The group format was powerful in terms of what these men were willing to share of themselves and their experience. These groups could be characterized as the coming together of strangers, bound by the common experience of “cancer,” who actively supported each other and each other's process. Implications for holistic nursing practice are provided.     

Adult children of parents with mental illness: Dehumanization of a parent – ‘She wasn't the wreck in those years that she was to become later’

Children who have lived with parental mental illness experience long‐standing reduced health and social outcomes, alongside ongoing personal distress. While there has been some dialogue regarding interventions to support children who are living with parental mental illness, there remains a paucity of knowledge regarding adult children's experiences and potential needs. Given this, the aim of the present study was to establish parenting narratives of adult children who had experienced childhood parental mental illness. This included their experiences of being parented alongside their own subsequent parenting roles. Three men and 10 women, ranging from 30 to 78 years old, met individually with a researcher to tell their stories. Narratives were thematically analysed to establish themes. The findings of the study demonstrated that individuals who have lived with childhood parental mental illness dehumanized their parent with mental illness. The authors argue that all mental health services should be underpinned with a whole of family assessment and care philosophy. There is also a need for all mental health services to consider how policies and procedures might inadvertently dehumanize clients who are parents, which could contribute to familial dehumanization. This could prevent the dehumanization of parents who experience mental illness to preserve parental and child relationships.     

Social support: some pragmatic implications for health care professionals

The role of social support in promoting recovery from chronic illness has been the focus of a debate within the nursing and social science research communities This paper reviews the literature on this important issue and discusses the implications for patient management In providing holistic patient care, health care professionals need to reflect on the impact of this research for their clinical practice     

Mothers with a serious mental illness: a critical review of the literature

The desire to mother in women with a serious mental illness (SMI) is increasingly recognized by health care professionals. Defining women with an SMI strictly in terms of cause, course, and treatment overshadows the diversity of their role as a mother. A review of the literature reveals that limited published research exists on the subjective experiences of mothers with an SMI. Often, the reviewed studies reinforce mothers as pathological. Viewed as lacking mothering abilities, they are not recognized as mothers. This article critically examines how the literature about mothers with an SMI has contributed to their marginalized position. To this end, a literature review was undertaken and examined from Oliver's theoretical notion of subjectivity from the marginalized or "othered" position. Subjectivity based on witnessing a mother's self-identity creates possibilities that are not exclusionary because of her difference secondary to illness.     

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.     

A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi,Pakistan

Purpose.?Previous literature has highlighted marginalisation and stigma of children with disabilities in developing countries, but few studies have explored the central care-giving environment and the relationship of the mother and her child with disabilities in this context. A group of women caring for children with disabilities in a low income community in Karachi, Pakistan was identified for the study. The aims were: (1) to explore the influence children with disabilities have on the daily lives of their mothers, (2) to describe the factors which influence the care-giving capacity of mothers.

Method.?A participatory qualitative research design was implemented. A women's group of caregivers of children with disabilities was formed. Several different tools were used during the course of the group meetings to facilitate discussion including social mapping. A thematic analysis of issues around care-giving and the relationship between the mother and her child with disabilities was conducted.

Results.?In a society where women may experience restrictions in freedom of movement and decision making, caring for a child with disabilities enabled women to move beyond traditional boundaries in seeking health and education services for their children. However, the gain in empowerment was counter-acted by a lack of care-giving support, a lack of appropriate services for health, rehabilitation and education of children with disabilities and stigma creating anxiety and stress for women.

Conclusion.?While children with disabilities do have some positive effects on the lives of their mothers, there are many more factors which create anxiety for this group of mothers (including a lack of care-giving support and stigma). Community-based rehabilitation strategies should consider the care-giving environment of children with disabilities and shift from a child only to family focus. Interventions which support, empower and strengthen the capacity of mothers are essential for the well being of their children with disabilities.     

Chronic illness: reflections on a community-based action research programme

AIM: The purpose of this paper is to describe the birth of a research culture in a community nursing service, and the development and implementation of an action research programme that focuses on understanding the experiences of living with chronic illness. BACKGROUND: Approximately 70% of the clients of our community nursing practice in South Australia live with chronic illness. Our research interest has focused on how community nurses can assist people living with chronic conditions to live 'well'. In this paper we describe the way in which we have applied the principles of participatory action research (PAR) when working with women who live with multiple sclerosis (MS) and urinary incontinence. We then draw on elements of PAR research with men who live with MS and men and women who live with type 2 diabetes. In total, we have convened eight PAR groups researching with people who live in the community with chronic illness and this work constitutes our chronic illness research programme. DESIGN: The PAR philosophy is based on the principles of democratic, equitable, liberating and life enhancing relations within a research process, and is operationalized in cycles of: look, think and act. In these collaborative inquiries the researchers have facilitated participants to reflect on how illness affects their lives, to tell their own story, make connections, plan action and help them negotiate the rites of passage. We select two areas for discussion: methodological issues in the application of PAR principles and our tentative findings from the chronic illness research programme. FINDINGS: We assert that the facilitator's skill in managing group dynamics is crucial to the life and outcome of the project. Change can occur as a result of action at an individual level, with improved self-management of chronic illness, or at a collective level where the PAR group instigates larger reform strategies. In terms of tentative findings, men and women living with a chronic illness appear to be involved in an ongoing process of transition toward incorporating the illness into their lives. Although we have not yet identified specific events, we have noted that there are critical turning points in the illness transition experience. Participants feel validated in telling their story of living with a chronic illness. Story telling may be the turning point that enhances the lives of all those who participate. CONCLUSION: If health care professionals can understand the process that facilitates people to move toward incorporating chronic illness into their lives, we can make a substantial contribution to enhance their chronic disease self care management.     

Paediatric palliative care: a lack of research-based evidence

Providing the best possible care for the child and family is paramount to health professionals working in paediatric palliative care. However, there is little research which enables practitioners to question their current practice. There are concerns about conducting research on children receiving palliative care at such a sensitive time for the child and his/her family. These concerns must be considered against the growing demand for clear standards and guidelines for practice within health care. According to the Department of Health (DoH) there is no place within the modern healthcare system for the adoption of unproven theories or outdated care (DoH, 1998). While no-one would question the dedication and care being delivered to children and their families by well-trained staff, the lack of research is a cause for concern. A group of students undertaking a degree module in paediatric palliative care identified the lack of literature and research in this area and have undertaken a review of the available literature.     

Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses). AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents. DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community. FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur. CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.     

Trajectory of certain death at an unknown time: children with neurodegenerative life-threatening illnesses.

Childred with neurodegenerative life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care. Most of their care is provided at home by their families over many years, yet there is a paucity of research examining families' experiences with a child with an NLTI is dying at home. In this grounded theory study, data were collected from 8 families through observations and audiotaped interviews. Families moved through a process of navigating uncharted territory as they lived with their dying child. The illness trajectory of cetain death at an unknown time was not a steady decline. Instead, families lived much of their lives on plateaus of relative stability where they often felt alone and isolated from health-care professionals. Inevitable, periods of instability originated in subsequent precipitating events in the process that led to families dropping off the plateau on the way to the child's inevitable death. Implications for research and practice are discussed.     

Registered nurses' lived experience of advocacy within a critical care unit: a phenomenological study

Anecdotally, it has often been expressed by registered nurses (RNs) working within critical care environments that they are patient advocates. However, to date, little systematic research has been undertaken to validate this assertion. Thus this project, which explored the lived experience of RNs working within a critical care unit in a country area of Australia, was conceived. The five participants of this study were all Division 1 RNs possessing a critical care certificate and a minimum of 4 years' nursing experience. Through their participation in an in-depth audiotaped interview they revealed a wealth of experiences and ideas about their involvement as patient advocates. The results of this research indicate that the phenomenon of nurse advocacy is a multi-faceted process and embraces many kinds of activities that nurses engage in on behalf of their clients. The findings of this study indicate that some of the participants' experiences are congruent with elements of advocacy contained within the nursing literature and statements of professional nursing bodies. However, there are some findings in this study that are not consistent with available literature. For instance, these participants markedly reject the notion that advocacy is an inappropriate concept for nurses, despite suggestions in the literature that this is an inappropriate role. Instead they wholeheartedly embrace this role, asserting it as central to their practice. Further, although the literature identifies potential controversies regarding enactment of the role of advocacy, the participants of this study are silent on these matters. It is not known what this silence implies and, in light of the study findings, it is recommended that nursing organisations, theorists and clinicians consider whether it is worthwhile to more clearly confirm the nature and role of advocacy within Australian nursing.     

What are the experiences of Emergency Department nurses in caring for clients with a mental illness in the Emergency Department?

Background

Australian Emergency Departments are experiencing increased numbers of clients with a mental illness and Emergency Departments are becoming increasingly utilised as the first point of contact and portal into the mental health care system. Therefore nurses working within the Emergency Departments find themselves having to care for clients with a mental illness as part of their daily work. The aim of this study was to gain an understanding of the experiences of Emergency Department nurses caring for clients with a mental illness in the Emergency Department.

Methods

An interpretive phenomenological study was undertaken using semi structured interviews to enable the lived experiences of Emergency Department nurses to be discovered and articulated. Six Registered Nurses working within an Emergency Department were interviewed, and these participants were asked to tell the story of their experiences in their own words.

Results

Results are based on data collected from six participant interviews. Three major themes emerged related to caring for clients with a mental illness in the Emergency Department: (i) Time as a causative factor, (ii) environment and the influence of surroundings and (iii) understanding the client's personal journey.

Conclusions

Data obtained from participants in this study confirm what has been reported in the literature, that is, that there has been an increase in presentations of clients with a mental illness to the Emergency Department, and the results of this study highlight that time constraints specific to the Emergency Department impact both the client with the mental illness and the Emergency Department nurse caring for these clients. In addition, narratives from Emergency Department nurses purport that the environment within the Emergency Department is not conducive to the provision of optimal care to this client group who have unique care needs and require a specialised management focus. Furthermore, the participants expressed that they had difficulty conceptualising the role of the Emergency Department in the client's personal journey. The concept of recovery in mental health comes into conflict with the culture within the Emergency Department that views recovery as a restoration or return to health rather than the unique journey of the client living with a mental illness.     

Managing chronic illness in the family: women as caretakers

This paper is based on an ethnographic study examining how families caring for a chronically ill child in the home construct their experiences of illness. The role of women caretakers is examined, and it is argued that the term family glosses over the work that women do in caretaking. The 'ideology of competence' which determines women's subjective experiences is discussed, and the notion is forwarded that health professionals rely upon this ideology to get the job of caretaking done in the home. Some implications of this discussion for health care delivery are presented.