Great expectations: a position description for parents as caregivers: Part II

Parents caring for a child with a chronic condition must attend to a myriad of day-to-day management responsibilities and activities. Part I of this two-part series (in the previous issue of Pediatric Nursing) reviewed both the adult and pediatric family caregiving literature within the context of four major categories of responsibilities: (a) managing the illness, which includes hands-on care, monitoring and interpreting signs and symptoms, as well as problem-solving and decision-making processes; (b) identifying, accessing, and coordinating resources, which involves assessing and negotiating community resources including health care providers; (c) maintaining the family unit, including balancing illness and family demands while at the same time attempting to meet the health and developmental needs of each family member; and (d) maintaining self, including physical, emotional, and spiritual health.. Part II presents a multifaceted list of parent caregiving management responsibilities and associated activities, and discusses nursing implications. The list was developed to facilitate "caregiving" dialogue between health care providers and families of children with chronic conditions. It is hoped that through such partnerships creative ways of educating, preparing, and supporting caregivers will be generated.     

Parent perceptions of child vulnerability are associated with functioning and health care use in children with chronic pain

ContextThe extent to which parent variables are associated with the level of disability experienced by children with persistent pain has been an area of increasing research.ObjectivesTo evaluate the extent to which parent perceptions of their child’s vulnerability are associated with functioning and health care utilization among children with persistent pain. We also evaluated whether perceptions of child vulnerability contribute to an indirect relationship between parent distress and child functioning and/or child health care utilization.MethodsThe study sample comprised 87 patients aged 6–18 years and a parent attending a chronic pain clinic. Children completed questionnaires on functional limitations, and parents completed questionnaires on parent distress, perceptions of child vulnerability, and extent of the child’s pain-related health care utilization. Hierarchical regression and bootstrapping mediation analyses were used to test study hypotheses.ResultsPerceptions of child vulnerability were found to be clinically elevated in nearly half (46%) of parents/caregivers, and average child functional ability for the sample was substantially lower than healthy norms. Parent perceptions of greater child vulnerability were significantly associated with poorer child functioning and more child pain-related health care utilization regardless of child age, sex, and duration of persistent pain. Parent distress was found to be indirectly related to child health care utilization through parent perceptions of child vulnerability but directly related to child functioning.ConclusionParent perceptions of child vulnerability appear important for understanding levels of child functional limitations and health care utilization among children with chronic pain.     

Great expectations: a position description for parents as caregivers: Part I

Parents caring for a child with a chronic condition must attend to a myriad of day-to-day management responsibilities and activities. This two-part series examines parental roles and responsibilities in detail. Part I will review both the adult and pediatric family caregiving literature. It will also describe four major caregiving responsibilities with associated tasks in both direct and indirect illness-related care, which parents are expected to perform when caring for a child with a chronic condition. These are: (a) managing the illness; (b) identifying, accessing, and coordinating resources; (c) maintaining the family unit; and (d) maintaining self. Part II (to be published in the next issue of Pediatric Nursing) will present a multifaceted list of parent caregiving management responsibilities and associated activities drawn from the literature. Clinical nursing implications associated with caregiver responsibilities and tasks will also be addressed.     

Adult Children of Parents with Mental Illness: Losing Oneself. Who am I?

There is a limited body of research that focuses on experiences of families of people with mental illness. While the body of knowledge concerning children of parents with mental illness is increasing, there remains limited discourse surrounding the experiences of adults who have lived with childhood parental mental illness. This paper examined one major theme of a study focusing on parenting narratives of adults who had experienced childhood parental mental illness. The narrative study from a metropolitan area of Australia reflects adult children's experiences of being overwhelmed with parental mental illness. They felt unsure of their own emotions and felt they had lost a sense of who they were as individual people. Adult children felt confused about their sense of reality, particularly for those whose parent had a diagnosis of schizophrenia or psychosis. Their experiences of loss were closely associated with changing self identity. Furthermore, many of the narratives demonstrated experiences of grief for adult children. Greater understanding of adult children's perceptions of being parented by a person with mental illness, alongside their experiences of loss, has the potential to help health and social care professionals to facilitate greater resilience for families who are living with parental mental illness.     

Australian parents’ experiences with universal child and family health services

BackgroundAustralian governments provide free services to promote maternal and child health, and to support parenting for families with children up to age five. Services are principally provided by dedicated child and family health nurses, but also by general practitioners, practice nurses, pharmacy nurses and midwives.AimThis study aimed to examine the experiences of families with young children across Australia in accessing and receiving health care for well children, parenting support and advice from a range of providers.MethodsThe study used quantitative and qualitative data from an online survey of 719 parents and carers with children aged up to five years.FindingsOn quantitative scales, most respondents rated healthcare providers favourably for accessibility, credibility and their approach to families. However, qualitative responses revealed widely varying reactions to child and family health provision. Parents described both positive and negative experiences, highlighting elements of practice that are critical to consumer engagement.DiscussionParents require health care and support that are accessible, consistent, affordable, encouraging, trustworthy, evidence-based and non-judgemental. Parents feel more confidence in the information and care provided by health professionals who are well-informed, resourceful and who respect their knowledge and beliefs.ConclusionThe findings demonstrate ways in which child and family health providers can engage and effectively support families with young children.     

The impact of the social and physical environments on parent–healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study

ObjectivesThis study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care.Research methodologyConstructivist grounded theory.SettingFour Australian paediatric intensive care units.Main outcome measuresAudio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory.FindingsThe physical and social environment of the intensive care unit influenced the quality of the parent–healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child’s care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like ‘watchers’, excluded from their child’s care.ConclusionsThe paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of ‘watcher’. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.     

Childhood Parental Mental Illness: Living with Fear and Mistrust

This paper presents one major theme of findings from a doctorate study. The study used a narrative enquiry approach, to gather parenting narratives of adult children of parents with mental illness. A Partnership Model for a Reflexive Narrative for Participant and Researcher (Partnership Model) was used to invite participants into the study, while encouraging a space for reflection for both the adult children and researcher. In total, 13 adult children participants constructed their narratives of living with childhood parental mental illness, alongside their current parenting role. Their stories reflected childhood experiences of fear and emergence of mistrust of others, particularly their parent with mental illness. For some participants, fear and mistrust continued into adulthood. Many adult children reported their childhood experiences of feeling lonely and isolated. They felt unable to disclose their experiences of parental mental illness to others. In addition, participants were unable to access information about their parent's condition, leaving them feeling unprepared and unskilled, despite their childhood desire to help their parent. This furthermore, compounded their sense of fear and isolation. Early identification of children and families experiencing mental illness is important to facilitate dialogue, psychoeducation and support. Social and health professionals have an important opportunity to enhance the social integration and support for families experiencing parental mental illness, to reduce long-standing fear, isolation and mistrust.     

Mothers in postdivorce families caring for a child with cystic fibrosis

This study explored the experiences of mothers of children with cystic fibrosis (CF) in postdivorce family structures. In-depth interviews of mothers were conducted by registered nurses with expertise in CF. Interviews focused on responsibility for care of the CF child within the context of postdivorce families (e.g., extent of nonresidential fathers' involvement in children's care, communication between households). Interviews were audiotaped and transcribed verbatim. The constant comparison method was used for analyzing interview data. Marital transitions contributed to the closeness between mothers and children with CF, but they also added to the mothers' sense of being overwhelmed with responsibilities. It is likely that children and mothers are more at risk for stress-related problems when mothers are overburdened by the demands of caregiving, earning a living, and other responsibilities.     

The process of striving for an ordinary,everyday life,in young children living with cancer,at six months and one year post diagnosis

PurposeHealth care focus is shifting from solely looking at surviving cancer to elements of attention relating to living with it on a daily basis.The young child's experiences are crucial to providing evidence based care. The aim of this study was to explore the everyday life of young children as expressed by the child and parents at six months and one year post diagnosis.MethodsInterviews were conducted with children and their parents connected to a paediatric oncology unit in Southern Sweden. A qualitative content analysis of interview data from two time points, six months and one year post diagnosis, was carried out.ResultsThe process of living with cancer at six months and at one year post diagnosis revealed the child's striving for an ordinary, everyday life. Experiences over time of gaining control, making a normality of the illness and treatment and feeling lonely were described.ConclusionNurses have a major role to play in the process of striving for a new normal in the world post-diagnosis, and provide essential roles by giving the young child information, making them participatory in their care and encouraging access to both parents and peers. Understanding this role and addressing these issues regularly can assist the young child in the transition to living with cancer. Longitudinal studies with young children are vital in capturing their experiences through the cancer trajectory and necessary to ensure quality care.     

Lebanese parents’ experiences with a child with cancer

BackgroundThe impact of childhood cancer on the family has been studied in different cultures and continues to be an object of study and concern, In Lebanon, a country of 4 million people 282 new pediatric cases of cancer age <20 years diagnosed in 2004 were reported in 2008.ObjectivesThe purpose of this study was to explore the experiences of Lebanese families living with a child with cancer.MethodThe study followed purposeful sampling in which 12 parents (mother or father) of a child with cancer were interviewed. Data were analyzed following the hermeneutical process as described by Diekelmann and Ironsides (1998).ResultsA constitutive pattern “It is a continuous battle” and five themes emerged from the data analysis. Living with the shock of the diagnosis; Alterations in the quality of the family’s life; Living with added burdens; Disease impact on the family and sibling dynamics; Living with uncertainty represent the major themes that emerged from the participants’ experiences while living with a child with cancer.ConclusionThe study contributes to the knowledge that would help health care professionals understand the experiences and challenges that are faced by Lebanese families living with a child with cancer. This awareness would serve as a basis for health care professionals in general and nurses in particular to understand parents’ experiences, and offer support, elicit communication of feelings, and examine possibilities for forming a partnership during the challenging course of the child’s illness. Supported parents are more likely to provide more effective care to their child with cancer.     

Competing demands for time and self-care behaviors, processes of care, and intermediate outcomes among people with diabetes: Translating Research Into Action for Diabetes (TRIAD)

OBJECTIVE

To determine whether competing demands for time affect diabetes self-care behaviors, processes of care, and intermediate outcomes.

RESEARCH DESIGN AND METHODS

We used survey and medical record data from 5,478 participants in Translating Research Into Action for Diabetes (TRIAD) and hierarchical regression models to examine the cross-sectional associations between competing demands for time and diabetes outcomes, including self-management, processes of care, and intermediate health outcomes.

RESULTS

Fifty-two percent of participants reported no competing demands, 7% reported caregiving responsibilities only, 36% reported employment responsibilities only, and 6% reported both caregiving and employment responsibilities. For both women and men, employment responsibilities (with or without caregiving responsibilities) were associated with lower rates of diabetes self-care behaviors, worse processes of care, and, in men, worse HbA_1c.

CONCLUSIONS

Accommodations for competing demands for time may promote self-management and improve the processes and outcomes of care for employed adults with diabetes.Diabetes self-management entails a complex set of health behaviors. For people living with young children or dependent adults and for those who work outside the home, caregiving responsibilities and/or expectations in the workplace may be barriers to self-management (1).We conducted a cross-sectional analysis using data from Translating Research Into Action for Diabetes (TRIAD), a multicenter prospective observational study of diabetes care in managed care, to assess whether there are associations between competing demands for time and diabetes self-care behaviors, processes of care, and intermediate health outcomes.     

Adult student nurses' experiences of encountering perceived child abuse or neglect during their community placement: Implications for nurse education

IntroductionWhile child nursing students may expect to encounter child abuse and neglect and assume a safeguarding role when they qualify, those undertaking adult nursing courses may not expect to come into contact with children and may be even less likely to expect to encounter child abuse or neglect. This paper presents the findings of an interpretative phenomenological analysis (IPA) study. Students learn through experience and reflection and Mezirow's Transformational Learning Theory (TLT) was used to explain the various ways in which nine adult nursing students attempted to make sense of and learn from their experiences of encountering perceived child abuse and neglect during their community placement.Study aimThe study aimed to examine the learning journeys of undergraduate adult nursing students who encountered perceived child abuse and neglect during their community placement.DesignThe research was located within an interpretative philosophical paradigm. Interpretative phenomenological analysis (IPA) provided an in-depth insight into participants' individual lived experiences.Setting and participantsThe fieldwork was undertaken at a Higher Education Institution in the North East of England. Participants were in the first year of an undergraduate nursing programme.MethodData were collected using semi-structured face-to-face interviews and analysed using IPA.FindingsThe nine participants underwent a process of transformational learning after encountering perceived child abuse and neglect. They found the initial experience disorientating because it challenged their pre-conceived ideas about families and communities. They experienced a range of negative emotional responses, including anger and some expressed judgmental views towards parents. However, their frames of reference changed as they began to critically reflect on and process their experiences and they were able to recognize, albeit to varying degrees, that they had enhanced their knowledge and learnt from the experience. Their understanding of the role of the adult nurse changed and they recognised they had an important role to play alongside other professionals in safeguarding children.ConclusionsThe findings highlight there is a need for HEIs to ensure students on adult nursing programmes understand they have a role to play in protecting children; they also highlight a need for more effective preparation and support.     

Effects of nurse-led child- and parent-focused violence intervention on mentally ill adult patients and victimized parents: A randomized controlled trial

BackgroundChild-to-parent violence is an often hidden serious problem for parental caregivers of mentally ill adult children who experience violence toward them. To date, the comprehensive dyadic parent-adult child intervention to manage child-to-parent violence is scarce.ObjectiveTo evaluate the effect of Child- and Parent-focused Violence Program, an adjunctive intervention involved with both violent adult children with mental illness and their victimized biological parent (parent–adult child dyads) on violence management.DesignOpen-label randomized controlled trial.SettingA psychiatric ward in a teaching hospital and two mental hospitals in Southern Taiwan.ParticipantsSixty-nine patients aged ≥20 years, with thought or mood disorders, having violent behavior in the past 6 months toward their biological parent of either gender were recruited. The violent patients’ victimized biological parents who had a major and ongoing role in provision of care to these patients, living together with and being assaulted by their violent children were also recruited. The parent–adult child dyads were selected.MethodsThe intervention was carried out from 2011 to 2013. The parent–adult child dyads were randomly assigned to either the experimental group (36 dyads), which received Child- and Parent-focused Violence Intervention Program, or to the control group (33 dyads), which received only routine psychiatric care. The intervention included two individualized sessions for each patient and parent, separately, and 2 conjoint sessions for each parental-child dyad for a total of 6 sessions. Each session lasted for at least 60-min. Data collection was conducted at 3 different time frames: pre-treatment, post-treatment, and treatment follow-up (one month after the completion of the intervention).ResultsOccurrence of violence prior to intervention was comparable between two groups: 88.9% (n = 32) parents in the experimental group versus 93.9% (n = 31) in the control group experienced verbal attack, and 50% (n = 18) versus 48.5% (n = 16) received body attack and were injured. The intervention significantly reduced violence, improved impulsivity, changed patients’ and parents’ violence attributions, and fostering active coping processes in the experimental group as compared to the control group (p < 0.05). No significant reductions were found in verbal aggression, cognitive and social reactions in the parent's reactions to assault, attentional subscale of impulsivity and wishful thinking (p > 0.05).ConclusionsChild- and Parent-focused Violence Intervention Program is effective on child-to-parent violence management in parent–adult child dyads. Thus, the intervention can be helpful for patients who have just been diagnosed with mental illness and had an episode of violence toward their parents within a narrow time frame.     

Family medical leave. An employee benefit for working caregivers of elderly family members

Future trends include a decrease in the number of adult children, an increase in the number of individuals over age 65, single parent families, working women, and individuals with no health care insurance. As more women with multiple roles and responsibilities enter and continue as part of the work force, employers recognize the need for support of family issues. Currently many employers lack initiative to make these needed changes. The occupational health nurses' role in relation to future policy for working caregivers includes assessment of how employment and caregiving impact work performance, job satisfaction, and health; and participation in defining public policy issues.     

Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition

IntroductionThe transition into adulthood is a developmental stage within the life cycle. A chronic childhood condition can disrupt this transition and create major challenges for both the young person and his or her family. Little is known about families’ experiences when living with a rare genetic disease. Therefore, the purpose of this literature review was to understand experiences of families living with a chronic childhood disease during transition into adulthood by integrating evidence.MethodA systematic review using an integrative approach to data inclusion and analysis comprising qualitative, quantitative and other methodological studies about a range of genetic and chronic childhood diseases was undertaken to identify relevant information. Databases searched were PubMed, Cochrane Library, PsychINFO, CINAHL, and AMED, using the search terms (1) family, caregivers, young adult, adolescent; (2) adolescent development, transitional programs, transition to adult care; (3) muscular dystrophy, spinal muscular atrophy, cystic fibrosis, haemophilia and sickle cell disease. Study findings were critically appraised and analyzed using critical interpretive synthesis.ResultsA total of 8116 citations were retrieved. 33 studies remained following the removal of duplicates, papers unrelated to genetic childhood conditions and families’ experiences of the transition into adulthood. Findings provided three perspectives: (1) the young person's perspective on how to “live a normal life in an extraordinary way” and “manage a chronic and life threatening disease”; (2) the parent perspective on the “complexity of being a parent of a chronically ill child” and “concerns about the child's future” and (3) the sibling perspective on “concerns about the siblings future”.As a consequence of the genetic childhood condition, during the ill family members’ transition into adulthood all family members were at risk for psychosocial difficulties as they mutually influenced each other. Previous research focused predominately on the individual illness experience, and less emphasis was put on the family perspective.ConclusionsYoung people and their family members experienced multiple challenges and not only for the ill individual but also there were consequences and health risks for the whole family system. Therefore, a family systems perspective to research and care is indicated to assist affected families to cope with their complex life and health situation.     

Development of the Australian hospital patient experience question set for parents

BackgroundThe Australian Commission on Safety and Quality in Health Care developed the Australian Hospital Patient Experience Question Set to ask adult patients about their experience of inpatient care. This question set was not validated for paediatric care.AimTo adapt and validate the Australian Hospital Patient Experience Question Set for parents and carers of children who received inpatient care.MethodsInterviews with fourteen parents and carers were conducted. Content analysis was used to revise the question set and to identify experience specific to children and parents. The Question Set was revised, including three new questions to reflect parent experience. Content validity of each new question was assessed. Data was split and construct validity assessed using exploratory and confirmatory factor analysis (n = 1500).FindingsTwo main qualitative categories of care included ‘parent experience’ and ‘children being heard’. Emotional support was an integral aspect of parent experience. The revised question set (13-question, one-factor model of good fit) demonstrated construct validity (n = 500: Root Mean Square Error of Approximation = 0.042, Confirmatory Fit Index = 0.997, Tucker Lewis Index = 0.996, Composite reliability = 0.962).DiscussionThis study adds empirical support for a common measurement framework for experience of care in children's health services. Parents spoke of the value of having a parent and a child reported survey. The next step is for children to report on their own experience.ConclusionThe revised (parent-reported) question set provides a validated tool which reflects the unique experience of parents and facilitates consistent monitoring and improvement of patient experience in a paediatric inpatient setting.     

Family caregivers' decision process to institutionalize persons with Parkinson's disease: a grounded theory study

BackgroundParkinson's disease is a degenerative neurological disorder affecting millions. Treatment priorities focus on delaying its progression and resulting disability, and helping individuals continue to live at home as long as possible. This often requires long-term assistance by family caregivers.AimsThe purpose of the study was to understand (1) family caregivers’ experiences in caring for a relative with Parkinson's disease, and (2) factors that influenced the decision to place the relative in a long-term care facility.ParticipantsTwenty semi-structured interviews were conducted with adult family members (17 female, 3 male) acting as full-time primary caregivers for a relative with Parkinson's disease.MethodGrounded theory was used to explore the process of healthcare decision-making and to illustrate the experiences of caring for persons with Parkinson's disease. The interview questions centered on family caregiving experiences and on how these caregivers made long-term care decisions on behalf of their loved ones. Data were coded and analyzed using dimensional analysis.FindingsThe caregiving model developed from the data illustrated that heightened caregiver strain—a risk factor for institutionalization—results from increased caregiving load and increased illness severity over time. Safety concerns, falls with severe injury, managing changes in health, and depleted support also influenced the decision to institutionalize the relative with Parkinson's disease.ConclusionsImplications from this research suggest the need for enhanced communication between providers and caregivers, formalized caregiver assessments, improved care coordination and family-centered interventions to avoid premature institutionalization.