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.     

Nurses' perceptions of parental involvement in hospital care

Parental involvement is an essential element of quality of care for children in hospital. However, there is often confusion in role perception between parents and nurses which may be affected by nurses' attitudes, their ability to provide information, their communication and interpersonal skills and willingness to relinquish control. AIM: This study examined nurses' perceptions of parental involvement and communication with parents of children in hospital and explored differences in perceptions of recent graduate nurses and more experienced nurses. METHOD: Two focus groups were carried out at a university paediatric hospital in Sweden, one with experienced paediatric nurses (n = 7) and one with recent nursing graduates (n = 6). FINDINGS: Analysis of the discussions identified five themes: clarifying roles, information, work environment, support and clinical competence. These nurses confirmed the belief that involving parents in the child's care is an important part of nursing in paediatric care and suggested that the nurses should play the role of being the communicator with the parents. CONCLUSION: Nurses need to be aware of the impact their communication has on parents and help them to clarify their role as parents in hospital.     

Parents' perceptions of quality health care

PURPOSE: To examine differences in definitions of health care quality and the importance of indicators of quality between consumers with dependent children and consumers with no dependents. STUDY DESIGN AND METHODS: This was an exploratory study using a convenience sample of 229 consumers--96 with one or more dependent children and 133 with no dependent children. Consumers were asked four open-ended questions as to their definitions of health care and nursing care quality. Consumers then rated the importance of 27 indicators of quality care. RESULTS: There were no differences between parents with dependent children and other consumers in how quality care was defined. Important indicators of quality nursing care to parents with children were: Being cared for by nurses who are up to date, well informed, and certified in their specialty; being able to communicate with the nurse; spending enough time with the nurse; and teaching by the nurse. Although having access to midwives was of lowest importance to consumers overall, it was significantly more important to subjects with children (p < 0.05). Getting care and services when needed was also more important to parents than to consumers without children (p = 0.05). Parents gave more importance to their interactions with the nurse than did subjects without children (t = 1.93, df = 229, p = 0.05). CLINICAL IMPLICATIONS: Parents and consumers without children have similar views of what constitutes quality nursing care--having nurses who are concerned about them and their children, demonstrating caring behaviors and staying attentive to their needs, being competent and skilled, communicating effectively, and providing the teaching needed for managing their own and their family's health problems.     

Are we getting it right? Parents' perceptions of hospice child bereavement support services

OBJECTIVE: To determine parents' experiences and perceptions of a support service for families with bereaved children, provided by a UK charity for cancer patients in seven hospices in the UK. METHOD: Individual interviews with 25 purposively selected parents. RESULTS: Parents used the service for: advice and reassurance; support for their children while they grieved; and advice on ameliorating behavioural difficulties at home and school. Non-service users did not think formalised support was necessary or had other sufficient support. Nevertheless, important to parents in both groups was that the service existed so their children's needs were being or could be addressed. Children and their parents benefited from talking to a non-family member, and being involved in social events that reduced feelings of isolation. CONCLUSION: The hospice child bereavement service was offered as an integral part of palliative cancer care support. Future research could explore collaborative work between counsellors and other professionals.     

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.     

Uncertain lives, uncertain health for children of Latino day laborers

Latino children of parents who work as day laborers are particularly vulnerable for poor health through economic difficulty and unstable living conditions. The purpose of this community-based participatory research was to explore the perceptions of Latino day laborer parents regarding barriers and assets to health for the children, and to identify strategies for change. Two focus groups were conducted with parent participants and interviews were conducted with community stakeholders. Findings revealed themes of difficulty accessing healthcare, perceptions of poor healthcare, and experiences of fear and chronic uncertainty. Strategies for change included help negotiating the healthcare system, family support, and relationship-based care. Findings give insight into the experience of Latino day laborer parents and inform strategies for community healthcare providers.     

"I have to turn myself inside out": caring for immigrant families of children with asthma

In multicultural societies, health care professionals encounter immigrant families of children with asthma. They play an important role in supporting these families, but few studies have focused on this phenomenon. The aim of the present study is to gain a broader understanding of the challenges health care professionals face in their encounters with non-Western immigrant parents of children with asthma. Seventeen professional caregivers were interviewed, and their narratives were analyzed using qualitative content analysis. The results show that health care professionals' main challenges when encountering immigrant parents can be described by the theme, "Turning oneself inside out." This theme is characterized by five categories: gender and professional issues, impact on professional relationships, communication challenges, unfamiliar disease and treatment perceptions, and time issues. The results highlight the importance of providing health care professionals with support and organizational conditions that increase opportunities to understand the unique situation of these families.     

Parents' perceptions of their 1-6-year-old children's pain.

BACKGROUND OF THE STUDY: Parents' perceptions of children's pain may have influence on how children's postoperative pain is alleviated at home after discharge from hospital. PURPOSE OF THE STUDY: To describe parents' perceptions of 1-6-year-old children's pain. METHODS: Mothers (N=201) and fathers (N=114) whose child had undergone a day surgery in 10 Finnish central hospitals between October 2000 and September 2001 filled in a questionnaire including statements of pain perceptions, a Visual Analogue Scale to assess children's pain intensity and Parents' Postoperative Pain Measure (PPPM) to measure children's pain behaviours. RESULTS: Most of the parents suggested that adults have the responsibility to alleviate child's pain and that alleviation of child's postoperative pain prevents the child's fears during future visits in child welfare clinic. However, majority of parents described that postoperative pain decreases every day or that pain is always a part of surgery. Differences in parents' perceptions were found by both parents' and children's background variables. Parents' perceptions of children's pain were related to children's pain intensity and pain behaviours after surgery. CONCLUSIONS: Parents' perceptions of children's pain were related to children's pain after surgery at home. Adequate information of children's pain should be provided to the parents before discharge to promote children's pain alleviation at home. Special attention should be paid on parents' expectations of boys' higher pain tolerance.     

Experiences of critically ill patients in the ICU.

BACKGROUND: Experiences of critically ill patients are an important aspect of the quality of care in the intensive care (ICU). OBJECTIVE: The aims of the study were firstly, to evaluate the perceptions of patients regarding nursing care in the ICU, and secondly, to explore patients' perceptions and experiences of ICU stay. METHOD: A qualitative approach using a semi-structured focused interview in 11 patients was used (phase 1), followed by a quantitative approach using a self-reported questionnaire in 100 patients, 62 were returned and 50 could be evaluated (phase 2). RESULTS: A number of themes emerged from the interviews (phase 1), although support dominated as an important key theme. This was experienced as a continuum from the feeling being supported by the nurse to not being supported. This key theme was central to each of the three categories emerging from the data pertaining to: (1) providing the seriously ill patient with information and explanation, (2) placing the patient in a central position and (3) personal approach by the nurse. The responders to the subsequent questionnaire (phase 2) predominantly experienced sleeping disorders (48%), mostly related to the presence of noise (54%). Psychological problems after ICU stay were reported by 11% of the patients, i.e. fear, inability to concentrate, complaints of depression and hallucinations. CONCLUSIONS: Although the nurses' expertise and technical skills are considered important, caring behaviour, relieving the patient of fear and worries were experienced as most valuable in bedside critical care.     

Family members’ perceptions of the nursing bedside handover

Aims and objectives. To explore families’ perceptions of shift‐to‐shift bedside handover. Background. The potential role families can play in bedside handover is unknown. Understanding family members’ perceptions can provide a foundation for nurses to tailor their bedside handover to family members’ perceptions, encouraging their involvement and potentially improving patient care. Design. Qualitative study, using case study methodology. Methods. The study was conducted with eight family members in one rehabilitation ward in Queensland, Australia, in 2009. Data included observations of bedside handover, field notes and in‐depth interviews. Thematic analysis of data was conducted to identify unique and common themes indicative of family perceptions. Results. Three major themes emerged. The first, understanding the situation, consisted of three subthemes: feeling informed, understanding the patient’s condition and understanding patient’s treatment. The second theme was interacting with nursing staff, with five subthemes, including sharing information, clarifying information, assisting in care, asking questions and interpreting for the patient. The final subtheme was finding value, which contained five subthemes: feeling at ease, feeling included, valuing individualisation, preparing for the future and maintaining patient privacy. Conclusions. Bedside handover provides an opportunity to involve family members in patient care and promote family‐centred care core concepts. Family members value the chance to participate and can ultimately improve the accuracy of handover communication. Relevance to clinical practice. Bedside handover is beneficial for nurses, patients and family members and embodies patient and family‐centred care. Managers should consider its implementation in hospitals, developing strategies such as standard operating protocols for a more family inclusive approach to communication. Nurses may require further training to best undertake bedside handover and involve family members in care. The study suggests expansion of research into this important area of family‐centred care.     

Parents and partners: lay carers' perceptions of their role in the treatment and care of adults with cystic fibrosis

BACKGROUND: Cystic fibrosis (CF) is the most common autosomal recessive genetic disease in Caucasian people, traditionally conceptualized as a condition whereby sufferers died in childhood. However, the current median survival age of 30 and a predicted median survival age of 40 for those born with the disease over the last decade ensure that families members will assist hospital staff with treatment and care well into most patients' adulthood. AIMS: This study explores the perceptions and experiences of lay care-giving amongst parents and partners of adults with CF who were being treated at a specialist CF centre in England. METHODS: Thirty-one relatives of adults with CF were interviewed in their own homes using an interview topic guide. All interviews were audiotape recorded and transcribed verbatim. Analysis of data was assisted by ATLAS-ti, a software package for qualitative research. FINDINGS: Two main themes surrounding lay carers' role in treatment and care were identified. Firstly, the notion of lay carers giving 'expert' care, both in hospital and at home was recognized. Parents' expertise was greater than that of partners until the patient required intensive hospital interventions, when partner expertise increased. Secondly, the degree of lay carers' felt inclusion in the hospital consultation appeared to depend on the nature of their relationship with the patient and the patients' health state. CONCLUSION: Lay carers are routinely performing tasks for adults with CF that were once the remit of trained nurses. Families need higher levels of nursing and social support when certain treatments are used at home. Attention needs to be directed to how lay carers of adult patients can be included in hospital consultations.     

Emotional pain: surviving mental health problems related to childhood experiences

Emotional pain is described as intense by women who suffer from borderline personality disorder (BPD), and a high prevalence of reported childhood abuse was found in the literature and in research. The aim of this study was to explore the experiences of women suffering from BPD with focus on emotional pain related to childhood. An explorative design was used. Data were collected from in-depth interviews consisting of women suffering from BPD ( n  = 13) and an interpretive content analysis was used to analyse the text. The findings revealed two main themes: 'Power' and 'Assessment of vulnerability'. The main theme 'Power' resulted in two categories: 'Surviving the feeling of being forced' and 'Surviving the feeling of having to assume responsibility'. The other main theme 'Assessment of vulnerability' had two categories: 'Surviving the feeling of being victimized' and 'Surviving the feeling of not being loved'. The findings suggest that nursing care need to develop an understanding of how these women endure their emotional pain, and try to survive as fighting spirits and how struggling became their way of life.     

Comparisons of parent cardiovascular knowledge, attitudes, and behaviors based on screening and perceived child risks

Questionnaire reports and universal screening procedures from 244 children (kindergarten, 5th grade, and 9th grade) were used to explore differences in parent health knowledge and attitudes of cardiovascular risks among children and parental involvement in promoting healthy lifestyles relative to whether their children were identified as being overweight or at risk of being overweight. The knowledge, attitudes, and behaviors of the parents of children who were identified as being at risk or overweight were further examined based on their perceptions of their children's level of risk. Parents' reports demonstrated significantly greater parent encouragement and knowledge of issues related to eating healthier foods and ways to cut calories among parents of children who were identified as being at risk or already overweight. A significant portion of parents underestimated their children's weight risks. Differences in parents' appraisals of their children's overweight risks were associated with differences in their knowledge, attitudes, and behaviors. These findings illustrate the need to address inaccuracies in parents' assessments of their children's overweight risks to improve parent investment and involvement in children's health modification programs.     

Fathers' everyday experiences of having an adult child who suffers from long-term mental illness

The purpose of this study is to describe the everyday life experiences of fathers of adult children who have various forms of long-term mental illness. Ten fathers were interviewed. Content analysis revealed one main theme: Maintaining a strong fa?ade while balancing on a thin line, and two sub-themes: (1) A constant struggle and (2) A feeling of powerlessness. The fathers demonstrated great engagement and good will to participate in their child's life. A sense of powerlessness and frustration at not having or being allowed freedom of action emerged. Cooperation between children, parents, the care service providers, and the authorities could increase the parents' abilities to provide adequate support to the child as well as helping them to understand and make the incomprehensible manageable.     

Establishing an action research group to explore family-focused nursing in the intensive care unit

This paper presents the first phase of a four-phase collaborative action research study which aimed to facilitate family-focused nursing in the intensive care environment. The purpose of phase one was to determine intensive care nurses' perceptions of family-focused critical care nursing and the appropriateness of family-focused nursing in the intensive care unit. A collaborative action research group was established with six registered nurses working in the intensive care unit of a metropolitan tertiary referral hospital. Data were collected through group discussions and analysed using open coding. Findings revealed two categories related to perceptions of family-focused intensive care nursing: partnership in care and maintaining a balance. The group unanimously agreed that family-focused nursing was appropriate in the intensive care environment. The three subsequent action research phases of this study are reported elsewhere.     

Caring for patients with terminal delirium: palliative care unit and home care nurses' experiences

AIM: To explore palliative care unit and home care nurses' experiences of caring for patients with terminal delirium. DESIGN: A qualitative exploratory design using individual interviews. SAMPLE: Participants included five nurses working in an interdisciplinary palliative care unit located in a large Canadian city hospital, and four nurses from a palliative home care nursing team located in the same city. RESULTS: Nurses in both sites experienced multiple challenges caring for delirious patients. Additional education on delirium and collaborative teamwork were viewed as key factors in enhancing their ability to care for and support this patient and family population. Four core themes reflected the participants' perceptions and experiences: experiencing distress; the importance of presence; valuing the team; and the need to know more. CONCLUSION: Findings suggest the need for interdisciplinary educational initiatives focused on the identification and management of terminal delirium, and targeted to the specific context in which nurses practise.     

Using the measure of processes of care with parents of children hospitalized for head injury.

Despite recommendations that rehabilitation programs adopt family/patient satisfaction as an outcome measure, few studies have addressed satisfaction with services for children with head injury. This report describes our use of the Measure of Processes of Care (MPOC) to document the perceptions of care of parents whose children were hospitalized with a head injury and to compare parental perceptions of care with those of the service providers (n = 16). The MPOC is a self-administered questionnaire consisting of 56 items, each of which is included in one of five care-giving scales: (1) enabling and partnership; (2) providing general information; (3) providing specific information about the child; (4) coordinated and comprehensive care; (5) respectful and supportive care. The MPOC was mailed to parents of children with a head injury who were consecutively admitted to a pediatric trauma center during a 5-mo period. The results, based on the responses of 73 parents (response rate, 59.3%), revealed that the needs of these parents are being met to varying degrees. Mean scores for the five scales ranged from 4.6 to 6.4 and from 5.9 to 6.6 for parents and providers, respectively. Significant differences between the groups were found for two scales: providing general and specific information. Because of the low percentage of valid responses for three of the five scales, the MPOC appears to be an inappropriate tool for use with parents of children with mild head injury (89%) in the acute care setting. The MPOC, however, is applicable for parents of children who are more severely injured (e.g., average hospital stay, 9 days) and is informative for rehabilitation service providers.     

Quality in pediatric nursing care: children's expectations

Children's perceptions of pediatric nursing care have not been systematically taken into account in the development of the quality of care. Usually, parents have evaluated children's care and its quality. The purpose of this study was to examine children's expectations concerning the quality of pediatric nursing care by interviewing 20 preschool and 20 school-aged children in Finland. Twenty of them had insulin-dependent diabetes mellitus (IDDM) and visited the hospital on a regular basis, and 20 were treated on a surgical ward for a short period. Using content analysis, the interviews were coded and categories and subcategories identified. The children's expectations concerning the quality of nursing care were related to the nurse, nursing activities, and environment. They expected the nurses to be humane and reliable, have a good sense of humor, and wear colorful clothes at work. Both the nurses and the parents were expected to take part in nursing activities. The children expected from nurses, in particular, entertainment, educational, caring, and safety activities, while parents were expected to relieve fears and longing and to provide company. The children also emphasized the role of other children as part of good care. The results demonstrate that children are capable of offering valuable insights into the quality of pediatric nursing care. The results open new avenues for strengthening children's perspectives on pediatric nursing.