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Needs of Children During the Critical Illness of a Parent or Sibling
Abstract
The needs and significance of well children in the family typically have not been considered when addressing family-centered care. Health care providers and overstressed parents may have little awareness of or insight into the needs and concerns of these children. Without informed and sensitive interventions, however, these children may be at risk for significant long-term negative effects. This article discusses some of the needs and responses of well children who have a critically ill parent or sibling. Using a developmental framework, the author suggests interventions that may benefit these often forgotten but very vulnerable family members.
... (1991) diskuterar dock att barns kapacitet att förstå händelser kan vara mycket större än deras kapacitet att visa att de förstått. Vanligtvis har barnet redan sett, hört och förstått vad som har hänt och fastän man menar väl så leder skyddandet av barnet till att barnet blir lämnat med sina fantasier vilka ofta kan vara mer skrämmande än verkligheten (Lewandowski 1992, Pierce 1998. Det kan också vara så enligt Titler m.fl. ...
... De skall dock inte ta föräldrarnas eller de närståendes plats. Familjemedlemmars engagemang när någon i familjen är svårt sjuk/skadad kan ha stor betydelse för den drabbade (Lewandowski 1992, Bergbom & Askwall 2000, för familjen som helhet och för den enskilde individen (Hickey 1990, Titler m.fl. 1991. ...
... Barn ska däremot inte tvingas till besök eftersom det enligt Shonkwiler (1985) kan det få negativa erfarenheter/upplevelser med ångest och stress som följd. Lewandowski (1992), Johnson (1994), Pierce (1998) och Clarke och Harrison (2001) beskriver strategier relaterade till ålder om hur barn reagerar på en närståendes kritiska sjukdom/skada och hur man kan gå tillväga om ett barn besöker på IVA. Emellertid är dessa strategier utarbetade enbart utifrån en syn på barns mognad baserad på ålder samt kunskap som erhållits i samband med syskons besök på barnavdelningar. ...
... Although many professionals recognize the potential psycho traumatic effect of parental illnesses for children (Rutter, 1966;Lezak, 1986;Lewandowski, 1992), some of the most precious information came from those working on a daily basis with those kinds of cases, being directly involved in care process (DeBoskey & Morin, n.d.;Buzzel, 1994;Johnson, 2000). Therefore, thanks to their clinical experience, one could have now a broad image about the changes imposed to families and their members by the parental illnesses. ...
... From the perspective of psycho-social medicine the presence or absence of a definite intervention intended to counterbalancing the secondary consequences of illness to families and children in particular is considered important. It is claimed that, in the case of an acute life threatening illness, the stressful reality cannot be avoided, but its psycho-traumatic impact can be reduced by protective interpersonal experiences (Lewandowski, 1992). The sensible points of any helping intervention are: the model, ways of communication, content of messages, duration and timing. ...
... The new situation can be considered as one of family crisis which bears to major disorganizations of the routines, and huge increase of emotional tensions between the healthy family members. Thus the child's psychosocial development is supposed to be affected by secondary effects of a parent's illness on family life, such as fears for the future, financial burdens, role changes, physical strains of caring, or marital distress as well as on the parent-child relationship in particular, such as changes in parental personality traits, parents' self-esteem, emotional availability for, parenting competencies, as well as separations due to hospitalisation or anticipated loss (Lewandowski, 1992;Romer et al., 2002). ...
... Children's psychological needs, issues, and behavioral manifestations in response to parental somatic illness vary depending on their developmental stage. These stages are presented below and summarized in Table 1, as based on relevant theoretical reviews (Adams-Greenly, Beldoch, & Moynihan, 1986;Armsden & Lewis, 1993;Bowlby, 1980;Field, 1984Field, , 1987Lewandowski, 1992;Segal & Simkins, 1996;Steck, 2000), child observations (Schaffer, 1958;Spitz, 1946), and research studies (Bibace & Walsh, 1979;Cross & Rintell, 1999;Diareme et al., in press;Power, 1985;Romer et al., 2002;Speece & Brent, 1992;Watson et al., 2006). ...
... Owing to their debilitating symptoms or sudden hospitalizations, ill parents' capability to provide their children with physical contact, feeding, stimulation, and comfort in a regular and consistently loving way may be seriously limited. Infants may react to an ill parent who is irresponsive with crying, clinging behavior, or changes in sleeping or eating patterns (Armsden & Lewis, 1993;Bowlby, 1980;Lewandowski, 1992). As Bowlby's seminal work on attachment and loss has demonstrated, infants as young as 6 months may be overtly distressed when they lose their mother, even temporarily. ...
... The absence of the parent due to hospitalization, for example, may be experienced by the child as abandonment or punishment. Like other frustrating situations, extended separations or distress of the ill parent may lead toddlers to temper tantrums more severe than expected for their age, increased negativity, or regressed behavior (Armsden & Lewis, 1993;Greenberg & Speltz, 1988;Lewandowski, 1992). ...
This article presents an overview of published studies on interventions with children and adolescents living with a parent who has a chronic somatic illness, organized according to type of intervention, children's age, stage of parental illness, and the goals, techniques, theoretical basis, duration, evaluation, and outcome of the intervention. Issues concerning children's psychological response to parental illness are addressed. Useful clinical guidelines are presented, including the promotion of illness-related knowledge and coping skills in children and the selection of treatment goals and intervention techniques according to the child's developmental needs, the family needs, and the stage of parental illness. The need for interventions for very young children and for evidence-based intervention studies is discussed. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
... Siblings play an important role in each other's emotional and psychologic development-and aside from parents-form the most long and enduring relationship within a child's life [21]. Sibling bonds before hospitalization influence well sibling reactions. ...
... When well-meaning adults try to shield them from unpleasant situations by providing little or no information, their stress is accentuated [5,15, 29 -31]. Because children's imaginations are their strength and weakness, gaps in information are filled with vivid and imaginative pictures that often are more distressing than reality [5,21,29]. The situation-imagined or real-can produce emotional, psychologic, and physical disruptions [24] if coping resources are exceeded. ...
... Sibling presence helps to facilitate family adaptation to hospitalization [15], can help to retain the feeling of ''family'' [7,33], and helps children integrate a stressful situation into their lives [9,16]. Presence at the bedside helps siblings cope with the intense emotions, stress, and change that are brought about by this event [1,10,11,16,21,31,34,35]. Siblings have an opportunity to see, feel, and touch their sibling, so they can reassure themselves that they really exist [15]; this helps them to dispel fantasies in young children, such as Jamie [5,33]. ...
Critical illness of a child affects all members of the family, including well brothers and sisters. Stress in their lives results from changes in parental behaviors, caregiving arrangements, and family relationships. These changes, along with limited understanding and information about the crisis, create feelings of confusion, loneliness, jealousy, and sadness, as well as physical symptoms and behavior changes. Educating pediatric ICU nurses about the needs and reactions of well siblings enables them to optimize support to siblings and educate parents. A sibling policy guarantees that choice and support are offered in a consistent and thorough manner to each critically ill child's family; this helps to ensure that the family unit has the abilities to nurture the ill child and other well children.
... Pre-school children may not have the language skills to describe their observations and perceptions, but they will be aware of parental mental illness. 6,7 They need to be included in conversations about what is happening, using age appropriate language 7 which is concrete and provides reassurance, such as, 'Mummy is taking medicine to help her get better'. Without this, they may draw their own conclusions, and attribute their parents' illness to something they have done. ...
... 6 It is important to let the children know that it is not their fault that their parent is unwell, and to give them information that dispels or reduces worry and feelings of helplessness. 7 Pre-school children, 2-5 year olds, comprise 5% of the Australian population. 1 The estimate that 21.73% Australian children live with either one or two parents with mental illness 2 means that approximately 50,424 Australian pre-school children have one or two parents with mental illness. ...
... In bislang entwickelten Konzepten der medizinischen Familienberatung und -therapie (McDaniel, Hepworth, Doherty, 1992; Cierpka, Krebeck, Retzlaff, 2001) wird zwar versucht, eine komplexe Sicht auf das System Familie in bio-psycho-soziale Ansätze der Patientenversorgung (comprehensive care) zu integrieren, jedoch fehlt hierbei meist eine entwicklungspsychologisch differenzierte Berücksichtigung der kindlichen Erlebnisperspektive. Neuere kindzentrierte Interventionsansätze in der medizinischen Familienberatung und -therapie zielen daher u.a. darauf ab, eine möglichst angstfreie Kommunikation zwischen Eltern und Kindern über vorhandene Ängste und Sorgen zu ermöglichen, die elterliche Kompetenz zu stärken, sowie auf Seiten der Kinder eine altersgerechte kognitive Orientierung zur Situation und eine möglichst aktive Bewältigung zu ermöglichen (Hoke, 1997; Lewandowski, 1992; Christ, 2000a; Davis-Kirsch, Brandt, Lewis, 2003; Rotheram-Borus, Murphy, Miller, Draimin, 1997; Romer u. Übersicht bei Diareme et al., 2007). ...
... Als klinisch-theoretischer Hintergrund wurden u. a. psychodynamische Konzepte (Gunther et al., 1998; Urbach u. Culbert, 1991), kognitiv-verhaltenstherapeutische (Davis-Kirsch et al., 2003; Rotheram-Borus et al., 1997 ), neuere entwicklungspsychologische oder sozial-kognitive Ansätze (Hoke, 1997; Lewandowski, 1992; Christ, 2000) sowie systemische Konzepte (Dale u. Altschuler, 1999; Rolland, 1999; Sholevar u. ...
Kinder körperlich kranker Eltern gelten als bislang klinisch unterversorgte und zu wenig beforschte Risikogruppe für die Entwicklung von seelischen Gesundheitsproblemen. Einleitend wird auf die epidemiologische und klinische Relevanz der Thematik eingegangen. Anschließend wird eine umfassende familiendynamische und entwicklungspsychologische Betrachtung der Auswirkungen einer elterlichen körperlichen Erkrankung auf minderjährige Kinder vorgenommen. Im Folgenden wird dann eine Übersicht über aktuelle empirische Studien gegeben, wobei Ergebnisse aus einer vom Autor koordinierten transnationalen europäischen Verbundstudie (COSIP - Children of Somatically Ill Parents) besonders berücksichtigt werden. Die wichtigsten Empfehlungen aus bislang publizierten Interventionskonzepten werden zusammengefasst, und das Hamburger COSIP-Beratungskonzept für Familien mit einem ernsthaft körperlich erkrankten Elternteil wird vorgestellt. Abschließend werden Ausblicke für Klinik und Forschung diskutiert. (ZPID)
... Kinder mehr Unterstützung außerhalb der Familie (Christ 1994, Hilton 1996, Worsham et al., 1997 (Armsden 1993, Lewandowski 1992, Rost 1992 (Compas 1994, Welch 1996. Möglicherweise spielt hier die Art der erfragten Symptomatik und damit einhergehend die bei Ju-gendlichen bekanntermaßen höhere Bewußtheit trauriger Gefühle im Rahmen der für die Altersgruppe typischen emotionsbezogenen Bewältigungsstrategien eine Rolle (Hoover 1975); Probleme treten auf vor allem bei Erkrankung des gleichgeschlechtlichen Elternteils (Ritter 1976); männliche Jugendliche reagieren eher "ungesund" als weibliche (Winckowski 1976 Mütter die Gruppe mit den meisten Auffälligkeiten (Compas 1994, Grant 1995, Welch 1996. ...
... Mütter alleinerziehend sind (Hilton 1996, Lewis 1996. Auch eine auf Intervention ausgerichtete Arbeit erwähnt zusätzliche belastende Lebensumstände als einen möglichen Risikofaktor (Lewandowski 1992 (Christ 1994, Compas 1994und 1996und 1994, Welch 1996, zu denen die umfangreichsten und methodisch hochwertigsten Untersuchungen vorliegen, aber auch in Untersuchungen zu Kindern von Hämophiliepatienten oder Patienten mit Multipler Sklerose (Power 1985 • strukturiertes Interview ...
... Nicholson et al. (1993) showed that if a child was allowed to visit their relative, and if they received information before entering the patient's room, their stress decreased. Since the 1980s it has been discussed whether or not young children should be allowed to visit patients cared for in ICU (Goodall, 1982;Lewandowski, 1992;Nicholson et al., 1993). Leske (1986) and Burr (1998) studied the needs of relatives in the critical care context. ...
... Unabhängigkeitsbestrebungen und die Notwendigkeit familiäre Pflichten zu übernehmen interferieren miteinander. Die eigene Hilfsbedürftigkeit wird oft abgewehrt und entsprechende Angebote abgelehnt (Lewandowski, 1992 (Riedesser & Schulte-Markwort, 1999). Die wichtigsten, für kindliche Entwicklungsprozesse bedeutsamen risikomildernden und risikoerhöhenden Bedingungen haben Scheithauer et al. 2000 beschrieben. ...
... The results emphasize that a chaotic family functioning interfere indirectly in the association between difficulties in family communication and satisfaction and higher levels of PTSD symptoms in adult children dealing with parental cancer. Also, the present results are in accordance with previous studies showing that in families dealing with cancer, communication patterns are considered an important factor prompting the ways in which the offsprings are affected (Lewandowski, 1992). In fact, in a parental cancer context, a more open communication with the healthy parent (mostly fathers) was related to fewer PTSD symptoms in daughters (Huizinga et al., 2010). ...
This study analyzed posttraumatic stress disorder (PTSD) symptoms and family functioning in a sample of adult children caregivers of cancer patients and in a group of adult children of nonchronically ill parents. Participants completed measures of family functioning and PTSD symptoms. The parental cancer group was subdivided into PTSD subgroups, and significant differences, on family functioning, were found. In the parental cancer group, the predictors of PTSD symptoms were being a woman and having an enmeshed or chaotic family functioning. Chaotic functioning mediated the relationship between family communication/satisfaction and PTSD symptoms, in the parental cancer group. Finally, there was a higher prevalence of PTSD symptoms in the parental cancer group, and participants with a probable PTSD diagnosis showed higher levels of family imbalance. This study shows that adult children facing parental cancer, who have a poorer family balance, may benefit from interventions that target family functioning.
... However, some studies have given some attention to this topic. For example, Lewandowski (1992) considers the level of disease-related information provided to the adult children, family communication patterns, and the quantity and quality of available social support to be important mediators that influence the way in which these children are affected by having a parent with cancer. Shifren (2008) investigated the parent-child relationships at the time of care, and the children's current perception of social support. ...
... However, some studies have given some attention to this topic. For example, Lewandowski (1992) considers the level of disease-related information provided to the adult children, family communication patterns, and the quantity and quality of available social support to be important mediators that influence the way in which these children are affected by having a parent with cancer. Shifren (2008) investigated the parent-child relationships at the time of care, and the children's current perception of social support. ...
... For instance, pre-school children tend to construct a meaning of their own or feel magically responsible for what happens to the parents (Hetherington & StanleyHagan, 1999; Telingator et al., 2000). Many authors have argued that children cannot be protected from the disease-related family stressors, hence children's experiences should be discussed with them according to their developmental level (Lewandowski, 1992). Others have argued that healthy adaptation will occur more probably when information is shared openly within the family (Wiener et al., 1998). ...
This study explores the emotional and behavioural problems in children living with an HIV-positive parent, and identifies specific high-risk and protective factors for their psychological well-being. Data were collected on 718 parents living with HIV and on 1136 HIV-affected children in a European multi-centre study (EUROSUPPORT IV) adopting a cross-sectional and retrospective study design. Sociodemographic characteristics, HIV-related stressors, variables relating to caregiving and outcome variables relating to family functioning and children's symptoms were assessed using a self-reported questionnaire. Results indicated a low level of parental HIV disclosure to children, and an elevated level of behavioural symptoms in HIV-affected children as reported by parents. Children had experienced a high degree of distressing life events. In multivariate analysis, perceived healthy family functioning emerged as protective for a low degree of behavioural symptoms in children and adolescents. The results call for a shift towards family-centred service delivery in HIV care and counselling. Service implications are discussed in the light of increasing numbers of women and couples living with HIV who become parents and need tailored support in facing the challenges of being a caregiver living with HIV.
... The level of illness-related information provided to the child, family communication patterns , and the amount and quality of social support available are considered as important moderators influencing the ways in which the child is affected by parent illness (Lewandowski, 1992 ). The present research aims to explore in depth how children cope with a parent's illness , whether there are certain coping strategies, the communication role in the process and how those strategies differ from one child to another, depending on age. ...
The purpose of this qualitative study of children having one of the parents affected by a severe central nervous system injury is to explore the role of communication within the children's coping process, to identify certain patterns of coping and to investigate how these may differ depending on the age of the children. We therefore analyzed 32 counseling sessions with 8 children (4 sessions for each child), from 8 separate families. Three of the children were about 12 years old, while the rest ranged from 14 to 17. The counseling session took place during a five months period, as it follows: a week after the injury occurred, one month later, three months later and five months later. The analysis led us to identify certain coping strategies such as wishful thinking, resignation, distraction or seeking social support. The research is even more important as the studies on the subject are nearly inexistent and it is focused on a category of utmost value – children.
... Abhängig von ihrer kognitiven Reife haben Kinder unterschiedliche Konzepte von Krankheit, deren Ätiologie und vom Tod. Jüngere Kinder erkennen Krankheit eher anhand konkret beobachtbarer Merkmale, wie "im Bett liegen" oder "Fieber haben" [9]. Jugendliche dagegen versuchen eher, sich reflektiert mit ihrer Ätiologie auseinanderzusetzen, und beschäftigen sich mit den Risiken infektiöser oder genetischer Übertragung der Krankheit auf sie selbst [1 ]. ...
Kinder von Eltern, die an einer ernsthaften körperlichen Erkrankung leiden, haben ein erhöhtes psychisches Erkrankungsrisiko. Insbesondere wegen der Häufigkeit von Brustkrebserkrankungen sind Kinder krebskranker Mütter die bislang am besten untersuchte Untergruppe dieser Risikopopulation. In dieser Übersicht werden zunächst die Auswirkungen einer Krebsdiagnose auf die weibliche Identität unter dem Aspekt der Mutterrolle beleuchtet. Danach werden alterstypische kindliche Ängste, Konflikte und Belastungen, die mit einer mütterlichen Krebserkrankung einhergehen können, sowie deren Bewältigung aus entwicklungspsychologischer Sicht dargestellt. In mehreren kontrollierten Studien wiesen Kinder krebskranker Eltern erhöhte Werte in Symptomskalen auf. Psychische Symptome äußerten sich hierbei am wahrscheinlichsten in Form von Angst, Depression, psychosomatischen Beschwerden oder sozialem Rückzug. Jugendliche Töchter krebskranker Mütter zeigten besonders gehäuft psychische Auffälligkeiten. Die Bedeutung die eine mütterliche Krebserkrankung auf die Pubertätsentwicklung heranwachsender Mädchen haben kann, wird diskutiert. Ferner wird anhand des Fallbeispiels einer neunjährigen Tochter einer Brustkrebspatientin die Vorgehensweise bei einer psychotherapeutischen Kurzintervention dargestellt, die darauf abzielte, Ängste zwischen Mutter und Tochter kindgerecht besprechbar zu machen. Konsequenzen für eine familienorientierte seelische Gesundheitsvorsorge im Rahmen der gynäkologischen Patientenversorgung werden diskutiert.
... Communicative discourse refers to the parent's attempt to ''keep close'' and to reassure the child of normalcy or at least a minimum of disruption due to the absence (Barnes et al., 2000;Wellisch, 1981;Fitch et al., 1999;Northouse, Cracchiolo-Caraway, & Appel, 1991;Shands et al., 2000). The success of this coping strategy may be related to the appropriateness of the level of disclosure balanced with the age of the child (Lewandowski, 1992). Reideser (1995) noted the danger of assuming that all dynamics of the parent-child relationship should be attributed to the separation: Multiple facets of the parent-child relationship prior to the disease have to be carefully examined to understand the process of symptom formation (during the separation). ...
This research explores the parental relationship (or lack thereof) between young adults in long-term care facilities and their children. The study explores not only the ecological impediments presented by the medical disposition of the parent but the psychosocial schism between parent and child, notwithstanding the redefinition of their role as parent and acceptance of the concept of interdependence. The article qualitatively addresses how such breaches are bridged through external parental substitutes and how the structural obstructions might be logistically addressed in the face of a parental inclination and desire to remain involved. Implications for practice, policy development, and future research are discussed.
... In addition, a number of other child factors have been proposed to be related to increased anxiety and depressive disorders during adolescence, including older child age, ethnicity, female gender, prior traumatic exposure and substance use. In facing the illness and potential death of a parent, older children may be at greater risk for adjustment difficulties , as they have greater awareness of the meaning and consequences of parental illness and death (Lewandowski, 1992; Raveis et al., 1999 ). Gender differences were also anticipated in children's responses to parental illness and death, with children's roles within families strongly related to their gender (Bornstein, 1995; Lee et al., 2002). ...
Children with a parent with HIV (PWH) are expected to be at increased risk for anxiety and depressive disorders because of the potential impact of parental HIV illness and death. PWH and their adolescent children were initially recruited in the context of a randomized intervention trial, with more than 60% of adolescents experiencing death of a parent prior to assessment. Using the Composite International Diagnostic Interview, lifetime and recent anxiety and depressive disorders were measured 4 years following enrollment. Adolescents of PWH had high rates of any lifetime and recent anxiety disorders. In particular, both lifetime and recent rates of post-traumatic stress disorder were high. Lifetime anxiety disorders were significantly associated with older age, baseline emotional distress and prior traumatic exposure, while lifetime depressive disorders were associated with female gender, parental bereavement and prior traumatic exposure. These findings demonstrate the need for appropriate screening and treatment of adolescents of PWH.
... [38][39][40][41][42][43][44] Children (notably adolescent girls) whose parents are ill are more likely to exhibit both short-and long-term emotional and psychological problems such as adjustment disorder, decreased self-esteem, and an increased risk of other emotional disturbances. [45][46][47][48][49][50][51][52] Better psychological outcomes, such as lower levels of depressive symptoms and anxiety for the children, have been associated with openness of general communication with the surviving parent and sharing of information about the other parent's death. 39,40 Similar results have been shown in siblings of sick children. ...
Background:
Families with young children often struggle to talk about and cope with a parent's life-threatening illness and potential death. Adult interdisciplinary palliative medicine teams often feel unprepared to facilitate the open communication with these children that has been shown to reduce anxiety, depression, and other behavioral problems. In pediatric settings, child life specialists routinely provide this support to hospitalized children as well as their siblings and parents. Although these services are the standard of care in pediatrics, no research reports their use in the care of children of adults with serious illness.
Objective:
Our aim is to describe a pilot child life consultation service for the children of seriously ill adult inpatients.
Design:
We summarize the support needs of these children, their families, and the medical staff caring for them and report our experience with developing a child life consultation service to meet these needs.
Setting/subjects:
Our service assists seriously ill adult inpatients and their families in a university medical center.
Results:
Informal feedback from families and staff was uniformly positive. During consultations, family and child coping mechanisms were assessed and supported. Interventions were chosen to enhance the children's processing and self-expression and to facilitate family communication.
Conclusion:
All hospitals should consider providing broad-based in-service training enabling their staff to improve the support they offer to the children of seriously ill parents. Medical centers with access to child life services should consider developing a child life consultation service to further enhance this support. More research is needed to evaluate both the short- and long-term clinical impact of these interventions.
... The burden associated with caring for a family member affects the social, leisure, and financial aspects of the caregivers' lives [20]. In the situation of parental cancer, the level of information received, the patterns of family communication, and the quantity and quality of available social support are considered important mediators that may influence the offspring's ability to cope [21]. Caring for a parent with cancer and being employed and married are social roles that involve constant interaction and social bonds that can potentially compete with the caregiver's time and attention. ...
Objectives:
This study examines the association between psychological morbidity, social support, and demographic and clinical variables in adult children of cancer patients undergoing chemotherapy. Special attention was given to the variable level of parental dependency. The main predictors of caregiving burden were tested, as well as the mediating role of social support in the relationship between psychological morbidity and burden.
Methods:
A total of 214 adult children caregivers of parents with cancer were recruited in Northern Portugal central hospitals. Caregivers completed Portuguese versions of the Depression Anxiety and Stress Scales, Impact of Event Scale-Revised, Satisfaction with Social Support Scale, and Burden Assessment Scale.
Results:
Significant associations among psychological, demographic, and clinical variables were found. Adult children with a greater perception of parent's dependency showed more distress, higher posttraumatic stress disorder (PTSD) symptoms, greater caregiving burden, and less satisfaction with social support. Hierarchical regression analyses revealed the main predictors of caregiver burden to be as follows: being a woman, caregiving duration, having a dependent parent, more distress and PTSD symptoms, and poorer social support. Social support was found to be a partial mediator in the relationship between psychological morbidity and caregiver burden.
Conclusions:
Results underscore the importance of perceived parental dependency in offspring's caregivers. Findings support the multidimensional issues associated to burden in this specific population, stressing satisfaction with social support as an important mediator between distress/PTSD and burden. Implications for further research as well as limitations of the present study are discussed. Psychosocial interventions should focus on caregivers' social resources to facilitate psychological well-being.
... Children's age and developmental stage can influence how they adjust to their parents' illness (Armsden & Lewis, 1993;Lewandowski, 1992). In the present study, we focused on adolescent children of people with MS as there is some indication that adolescents might be at increased risk of maladjustment (Bogosian, Moss-Morris, & Hadwin, 2010). ...
The aim of this study was to explore how adolescents with a parent with multiple sclerosis (MS) adjust to their parents' illness.
We used an inductive qualitative approach with open ended questions as this was appropriate to facilitate the development of a broad and child-centred understanding of how adolescents adjust and which resources they use to cope with the challenges that are associated with parental MS.
Fifteen semi-structured face-to-face interviews were conducted. Interviews were audiotaped, transcribed, and analysed using inductive thematic analysis.
Adolescents described both positive and negative experiences related to having a parent with MS. Benefits to having a parent with MS included reports of feeling more empathetic to others and more grown-up. Negative impacts included family tension, less time to spend with friends, and worries about the future. The support from the well parent, siblings, and friends were found to facilitate adolescents' adjustment. Adolescents assuming a parenting role and illness characteristics, such as illness deterioration, relapses and fatigue, challenged adolescents' adjustment to having a parent with MS.
Some adolescents described adjusting well to having a parent with MS, while others appeared to have more difficulty. Whilst the severity of the parent's deterioration and symptoms appeared to play a role in adjustment, other potentially modifiable factors such as the lack of well parent's support, adolescents' increased parenting responsibilities, and family tension also posed barriers to adolescents' adjustment. Support interventions may be helpful for vulnerable adolescents, which consider both family and individual factors.
... Todesvorstellungen nicht "vom Alter oder der kognitiven Entwicklung, sondern von den Erfahrungen des Kindes" abhingen (S.271). LEWANDOWSKI (1992) Sie beschreiben, dass die Sorgen der 7-bis 10-Jährigen besonders von der Angst um die Familienintegrität, von Traurigkeit, Einsamkeit und Ängstlichkeit bestimmt sind. ...
Hamburg, Univ., Diss., 2002. Computerdatei im Fernzugriff.
... Even in a study of children that did not show significantly higher rates of distress among those whose mothers had breast cancer, possibly due to small sample size, questions are raised about the need to further assess levels of concern and parent-child communication in these families [20]. Qualitative studies in the nursing literature identify themes of powerlessness, isolation, family disruption, increased anxiety and somatizing among these children, as well as significant parental stress, and make recommendations for developmentally appropriate nursing interventions for the families of oncology patients [21][22][23][24][25][26]. ...
Almost one quarter of all cancer patients in the United States is estimated to have children under 18-years-old living with them. However, there is limited research on how children's functioning is affected by parental cancer, and the impact of parenting concerns on treatment decisions. This paper will review the literature and hypothesize about why addressing the needs of the children has not been part of routine cancer care. In addition, we will make a case for the importance of including parenting issues in cancer care, and in assessments of treatment decision-making and quality of life. We also describe a clinical program that is attempting to address these issues, and offer practical recommendations for oncologists who want to help parents with cancer and their partners support their children through the challenges of cancer treatment.
... Abhängig von ihrer kognitiven Reife haben Kinder unterschiedliche Konzepte von Krankheit, deren Ätiologie und vom Tod. Jüngere Kinder erkennen Krankheit eher anhand konkret beobachtbarer Merkmale, wie "im Bett liegen" oder "Fieber haben" [9]. Jugendliche dagegen versuchen eher, sich reflektiert mit ihrer Ätiologie auseinanderzusetzen, und beschäftigen sich mit den Risiken infektiöser oder genetischer Übertragung der Krankheit auf sie selbst [1 ]. ...
Children having a parent who suffers from a serious somatic disease are at increased risk for mental health problems. Mainly due to the high prevalence of breast cancer diseases children of mothers with cancer are the most studied subgroup of this risk population. In this review the sequelae of a cancer diagnosis on a patient's female identity with respect to the maternal role are illuminated. Then, children's fears, conflicts and stressors that may be typically associated with maternal cancer are differentiated by age groups from a developmental perspective. In several controlled studies children of cancer patients had increased scores in symptom scales. If there are psychic symptoms, these are likely to manifest themselves as anxiety, depression, psychosomatic complaints or social withdrawal. Adolescent daughters of mothers having cancer had an especially increased risk to develop symptoms. The possible impact of a maternal cancer disease on a developing girl's puberty is discussed. In addition, a case vignette of a nine-year-old daughter of a breast cancer patient illustrates psychotherapeutic procedures in a brief intervention, the goal of which was to facilitate talking about fears between mother and daughter. Perspectives of family oriented mental health prevention in the context of gynaecological care are discussed.
Purpose
The DANish LIFE course (DANLIFE) cohort is a prospective register-based study set up to investigate the complex life course mechanisms linking childhood adversities to health and well-being in childhood, adolescence and young adulthood including cumulative and synergistic actions and potentially sensitive periods in relation to health outcomes.
Participants
All children born in Denmark in 1980 or thereafter have successively been included in the cohort totalling more than 2.2 million children. To date, the study population has been followed annually in the nationwide Danish registers for an average of 16.8 years with full data coverage in the entire follow-up period. The information is currently updated until 2015.
Findings to date
DANLIFE provides information on a wide range of family-related childhood adversities (eg, parental separation, death of a parent or sibling, economic disadvantage) with important psychosocial implications for health and well-being in childhood, adolescence and young adulthood. Measurement of covariates indicating demographic (eg, age, sex), social (eg, parental education) and health-related factors (eg, birth weight) has also been included from the nationwide registers. In this cohort profile, we provide an overview of the childhood adversities and covariates included in DANLIFE. We also demonstrate that there is a clear social gradient in the exposure to childhood adversities confirming clustering of adverse experiences within individuals.
Future plans
DANLIFE provides a valuable platform for research into early life adversity and opens unique possibilities for testing new research ideas on how childhood adversities affect health across the life course.
Zusammenfassung. Psychosoziale Interventionen fur Krebspatienten und Einbezug der Partner gehoren mittlerweile zum Behandlungsstandard integrativer Versorgung. Allerdings werden die Patienten immer noch selten in ihrer Elternrolle wahrgenommen und familienzentrierte Angebote bei der Behandlung von korperlich kranken Patienten ungenugend berucksichtigt. Aktuelle Studien zeigen, dass Kinder krebskranker Eltern ein erhohtes Risiko fur psychopathologische Symptome aufweisen. Das Ziel des Artikels ist es, anhand qualitativer und quantitativer empirischer Studien einen Uberblick uber kindliche Belastungen und familiare Verarbeitungsformen der elterlichen Krebserkrankung zu geben sowie eine entwicklungspsychologische Sichtweise zu vermitteln. Das Hamburger COSIP-Beratungskonzept fur Familien mit einem ernsthaft korperlich erkrankten Elternteil wird vorgestellt.
Kinder körperlich kranker Eltern gelten als bislang klinisch unterversorgte und zu wenig beforschte Risikogruppe für die Entwicklung seelischer Gesundheitsprobleme. Im vorliegenden Beitrag wird einleitend die epidemiologische und klinische Relevanz der Thematik beleuchtet. Anschließend wird auf die familiendynamischen und entwicklungspsychologischen Folgen der elterlichen körperlichen Erkrankung für minderjährige Kinder eingegangen. Es schließt sich eine Übersicht über aktuelle empirische Studien an, in der Ergebnisse aus einer transnationalen europäischen Verbundstudie (COSIP – ,,Children of Somatically Ill Parents“) besonders berücksichtigt werden. Die wichtigsten Empfehlungen aus bislang publizierten Interventionskonzepten werden zusammengefasst. Abschließend werden Ausblicke für Klinik und Forschung diskutiert.
The children of seriously ill parents are at risk for emotional disturbances. This review covers five former reviews, three theoretical articles, five case studies and 39 sample studies from the last 15 years. Methodological problems and shortcomings of previously published studies are discussed in detail. Based on former reviews and theoretical approaches, a developmental framework for children’s adaptation processes is elaborated. Empirical studies are analysed with a differentiation of how various results were correlated with the types of parental diseases and children’s age groups studied, as well as with various methodological designs and instruments applied. It appeared evident that children of seriously ill parents had higher scores on symptom scales than did controls, with a tendency towards internalizing symptomatology. In several studies, adolescent daughters of ill mothers appeared to be at highest risk for maladjustment. Ill parents’ subjective perception of their impairment predicted children’s symptoms better than the objective degree of severity of their disease. Although subgroups of children adjusted well, covariant protective mechanisms could not be clearly identified. In conclusion, suggestions for further research include ethical standards, a profound theoretical framework for any hypothesis to be tested, a combination of qualitative and quantitative methodology, the integration of the child’s subjective dimension by semi-structured or open interviews, and the consideration of coping as a process through longitudinal designs.
Kinder krebskranker Eltern erfahren als Zielgruppe familienbasierter Hilfsangebote im Rahmen der seelischen Gesundheitsvorsorge zunehmende Aufmerksamkeit in der psychosozialen Onkologie. Aufbauend auf den langjährigen Erfahrungen der Beratungsstelle „Kinder körperlich kranker Eltern“ am Universitätsklinikum Hamburg-Eppendorf mit dem dort entwickelten Konzept „Children of Somatically Ill Parents“ (COSIP) für eine kindzentrierte medizinische Familienberatung wurde ein für den psychoonkologischen Kontext spezialisiertes Manual entwickelt, das derzeit multizentrisch erprobt wird. In diesem Beitrag werden die theoretischen Grundlagen und die praktische Vorgehensweise bei der Beratung von Familien mit einem krebskranken Elternteil in einer Übersicht dargestellt. Wesentliche Elemente sind die fallbezogen flexible Handhabung der drei Systemebenen Eltern, Kind und Familie bei der Gestaltung des Settings sowie die Fokussierung auf vorab definierte ein bis zwei Interventionsziele, von denen im Rahmen einer familienbasierten Kurzintervention am ehesten eine Stärkung der familiären und kindlichen „Coping“-Ressourcen erwartet wird. Ausblicke für die Versorgungspraxis und Forschung werden diskutiert.
Abstract
Children of cancer patients are increasingly being paid attention to as target group for family-based mental health prevention concepts in psychosocial oncology. Based on the long-term experiences with the concept Children of Somatically Ill Parents (COSIP) for child-centred medical family counselling, which was developed at the counselling service COSIP at the Hamburg University Medical Centre, a specialized manual was developed for the context of psychosocial care in oncology, which is currently being tested in a multi-center approach. In this article the theoretical framework and the practical steps of this manualized concept in caring for families with a parent having cancer are summarized. Characteristic elements are the flexible handling of the three system levels parents, family and child in the counselling setting as well as focussing on previously defined intervention goals which are expected to strengthen the coping resources in the family and the children. Perspectives for clinical practice and research are discussed.
Reviews the literature investigating the impact of parental medical illness on children, communicates current knowledge regarding children's coping with this stressful experience and reviews existing interventions targeting children's adaptation to parental medical illness. The chapter first presents an overview of medical illness among young and middle-aged adults of parenting age. Second, it reviews the literature targeting the children's psychological adjustment to parental medical illness, including consideration of methodological problems in this area. Third, it reviews the research that has examined children's coping and social support in response to parental medical illness. Fourth, it provides an overview of the few existing interventions targeting children's adjustment to parental medical illness. The chapter concludes with a discussion of directions for future research. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Discusses specific considerations, approaches, and interventions that are important to the care of children and their families after acute traumatic injury. Sudden unexpected physical trauma brings with it psychological trauma. Without intervention, traumatized children may experience long-term negative sequelae that may have significant effects on their psychological and physical health and development. The psychological/psychiatric consultant is in a key position to provide assessment, intervention, family and staff education, and ongoing support that will assist in the child's and family's working-through and successful mastery of the trauma. Working with children who are injured by sudden, traumatic events requires a multifaceted approach, sensitivity, creativity, sometimes courage, and a good backup support system for the consultant who, at times, can himself or herself feel the toll of the horrible realities and intense emotions. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Role Play is an issues-related forum to engender dialogue about the roles assumed by nurses who care for children and their families.
Children of parents suffering from a serious disease (e.g. cancer, multiple sclerosis, Aids) are at increased risk for mental health problems. Empirically based interventions for these children are missing. At the University Medical Centre Hamburg-Eppendorf, a preventive short-term counselling service has been existing since July 2000. Results from a 6-month evaluation (n=50) are presented. The evaluation encompasses a retrospective interrogation in a multiperspective und multidimensional approach. Most families experienced the intervention as helpful and supportive in coping with the multiple stressors of the situation. Out of a previously defined list of 12 intervention goals, enhancing anticipatory grief in children, their active coping behaviour as well as parents’ sense of their own parenting competence were identified as the most important foci of the counselling interventions, as reported by parents, children and therapists.
Children's subjective experience of growing up with a somatically ill parent was studied by a qualitative analysis of individual interviews with children having a parent on hemodialysis. Transcripts of semi-structured interviews with 8 children and adolescents between 6 and 17 years and with one ill mother, whose father had had the same disease, were evaluated through structuring content analysis and psychoanalytical text interpretation. All individuals showed a strong sense of responsibility for their parents. In some cases this conflicted with their strives for autonomy. Almost all children tried to avoid conflicts with their parents. Younger children suffered from diffuse sadness, whereas children up from 11 years had concrete fears of medical complications or their parents' possible decease. In case parents spoke frankly about their illness, children felt relieved. Results suggest that growing-up with a chronically ill parent means a sustaining experience for a child, which requires enormous efforts of psychological adaptation. In preventive counselling concepts, parents should be strengthened in their competence as emotionally available attachment figures.
This paper is a report of a study into how children and young people constructed their experiences of visiting a critically ill family member in an intensive care unit.
Previous intensive care research has focused almost exclusively on adult family members, and so far children and young people have been excluded from family studies in this area. Consequently, very little is known about children's and young people's needs or their understanding when visiting an adult intensive care unit.
Between 2002 and 2005, nine family interviews (12 adults and 12 children) were conducted. A constructivist grounded theory approach was employed in gathering and analysing data.
The way in which children and young people discussed their intensive care visiting experiences suggest two different levels of understanding. Children tended to speak about intensive care on a concrete level, focusing on the environment (intensive care unit as environment). Young people, in contrast, understood their visiting experiences on an abstract level, focusing on the function of intensive care (intensive care unit as function).
A structured and age-appropriate approach to support children visiting an adult intensive care unit still needs to be developed. It is time for nurses to reflect on current practice, challenge beliefs and attitudes towards child visitation. Crucially, nurses need education in listening skills and understanding children and young people's needs when an adult family member is in an intensive care unit. Further research is needed to develop appropriate support interventions and to investigate the importance and effects of intensive care unit visiting on children and young people.
Bone marrow transplant (BMT) is being used ever more widely for advanced and refractory malignancies. The family unit and individual members are profoundly affected by this treatment process. Few studies have examined the effect of parental BMT on the family, and there are no known studies which have investigated the impact of parental BMT on children. A descriptive design with longitudinal data from 61 children, ages 10-18, examined children’s adaptation, characterized as emotional and behavioral response, during the acute phase of parental BMT. The study included 3 time points: pre-transplant, during parental hospitalization, and one month after transplantation. The Response to Stress Questionnaire, and subscales from the Child Health Questionnaire and Family Environment Scale were used to assess child, parent, and family variables associated with child adaptation. Child emotional and behavioral response significantly improved over the course of the parent’s transplant, and significant changes in children’s use of coping strategies at each time point were found. The model accounted for 27% to 46% of the explained variance in child behavioral response, and accounted for 41% of the explained variance in emotional response prior to the parent’s BMT and one month after BMT. The model did not explain the variance of child emotional response, however, during the parent’s hospitalization. Family structural change, family conflict, and disengagement coping were found to be the predominant variables significantly associated with more negative child behavioral response across the transplant trajectory. Female child gender and increased use of disengagement coping before the parent’s BMT, autologous BMT during the parent’s hospitalization, and increased family structural change when the parent returned home one month later were significantly associated with more negative emotional response in children. Additional cross-sectional and longitudinal studies, using mixed methods, and include both parent and child data, are needed to substantiate the validity of findings. The data also suggests that significant variables in this model could be further studied for their association with one another and for refining a more accurate and inclusive model that may better explain children’s adaptation. Indiana University-Purdue University Indianapolis (IUPUI)
Including children and young people in family research increases study complexity and as a consequence they are excluded from most studies and little is known about their experiences with critical illness in their families.
The overall study aimed at exploring families' experiences with critical illness in intensive care and nurses' perception of families. This article presents findings in relation to one specific aspect, namely how children accessed information while a family member was in ICU.
Constructivist grounded theory.
Focus groups with families and nurses. The study was organised in two phases (1) family group interviews and (2) focus groups with nurses. Reported data originate from nine family interviews (12 adults, 12 children/ young people). Interviews were recorded, transcribed verbatim and imported into NVivo for data management and analysis. The principal approach in grounded theory, the constant comparative method, was followed.
The findings suggest that the themes 'adults controlling information', 'keeping normality in life' and 'fishing for information' reflected the children and young people's experiences in accessing information during a critical illness in their families. The activities children and young people described, which constructed these themes appeared to result directly from issues of clinical and functional uncertainty. The strategies children and young people developed to access information about their family member's critical illness emerged in the context of power asymmetries in families.
It is suggested that including young people in critical illness situations is crucial to supporting them through a time of uncertainty. Being able to visit their loved one in ICU was an important means to access information for young people in this study.
Parents and nurses need to reflect on young people's ability and right to participate by being open and honest with children of all ages.
Critical care nurses have a responsibility to provide care from a family-systems perspective in which illness is not an isolated, time-limited event, but instead a highly stressful situation that evolves from the family's history and contributes dynamically toward its future. This article discusses nurse-family relationships, strategies to promote family-focused care, and mechanisms to make family-focused care a reality.
The aim of this study is to investigate whether, 2 years after the study by Biley et al (1993), visiting in intensive therapy units (ITU) remains restricted. The study was conducted over the summer months of 1995, and ITUs in southern England were contacted. It revealed more favourable results regarding some aspects of visiting practices, but not others.
Recent surveys show that children are still restricted from visiting their critically ill family and friends on many adult intensive care units throughout the country. The purpose of this small-scale exploratory pilot study was to examine and describe the experiences and perceptions of trained nurses towards children visiting within this setting. The aim of the study was to gain greater insight and understanding into the reason why, despite evidence to support the benefits to children of visiting their critically ill family and friends, they remain discouraged and restricted. It is hoped that the study will act as an initial enquiry to generate themes and further research questions. A qualitative research approach was adopted and in-depth focused interviews used as a method of data collection. The participants of the study were trained nurses working on an adult intensive care unit in a district general hospital in England. A total of 12 individual interviews were conducted which were audiotaped in full and analysed using a method of thematic content analysis. The value of the research is to promote family-centred care within an adult intensive care environment to meet the neglected needs of the well children of the critically ill person. The findings suggest that the participants in the study attempted to offer valuable support to children visiting their critically ill family and friends, but, despite an open visiting policy, children rarely visited within this setting. The desire of the well parent to protect and shield the child from the crisis of critical illness was perceived by the participants to be the main reason why they did not visit. To provide family-centred care within an adult intensive care setting has many implications for practice and several of these important issues are discussed. These include the educational and training needs of nursing staff and the importance of adopting a collaborative team approach to providing care for the critically ill person and their family. The need to generate research and literature from within the United Kingdom's health care system has also been identified and recommendations for further studies are proposed.
Little research has been published addressing the effects of sibling visitation on the nonhospitalized sibling. This integrative review synthesizes the studies and has been summarized to include findings, gaps, and limitations. The majority of research regarding the benefits of sibling visitation has come from the Neonatal Intensive Care Unit (NICU). This summary, however, includes one study set in the NICU, one set in an adult ICU, two on a postpartum floor, and one based on siblings of pediatric patients. Findings indicate that children who visited their sibling exhibited improved activity levels, spoke more about their siblings, and did not increase the frequency of infectious signs and symptoms in the newborn siblings. Implications for research utilization include the identified benefits and minimal risks of sibling visitation. Nurses have a vital role initiating and implementing policies that incorporate more liberal sibling visitation.
Little is known about the frequency of children visiting their nearest relatives in adult ICUs or if there are any policies/guidelines or recommendations regarding these. The aims of this multi-centre descriptive study were to survey Swedish ICUs policies/guidelines or recommendations, and examine the reasons given both for and against restricting child visits; if parents/guardians sought advice in connection with such visits, and if any differences in demographic data could be ascertained. Fifty-six Lead Nurse Managers (LNM), representing as many general adult ICUs, participated by answering a questionnaire. Only one ICU had written policy/guidelines concerning child visits; most ICUs (70%) had no policies/guidelines at all. All LNMs reported that their ICU was positive to child visits, but only two actively encouraged these. Nineteen (34%) of the ICUs restricted child visits. More than 50% of the LNMs reported that only about half of their patients ever had visits from children. Seventy percent of the ICUs had no restrictions on visiting hours, but 30% imposed some form of restriction. Twenty LNMs reported that 75% of the parents/guardians of children 0-6 years old asked for advice about child visits. However, those responsible for children >12 years of age seldom asked for any advice at all.
Traditionally, children appear to have been discouraged from visiting in adult intensive therapy units. Various reasons have been given, mostly unsubstantiated by research. There is minimal information specifically related to this topic, but all studies (and related studies) reviewed propose visiting as a method to help children cope with critical illness in an adult family member. This postal survey offers a general perspective of how units have responded to the nursing literature and previous recommendations to date. This appears to have been the first national study specifically exploring the support for children visiting (or who may wish to visit) a critically ill adult in an intensive therapy unit. This study highlights (perhaps for the first time) not only the lack of policy and staff education but also the lack of available information for visitors, regarding visits by children so that they can make informed choices together.
There has been growing evidence to suggest that by not actively supporting children who have a critically ill loved one in an Intensive Therapy Unit (ITU), we may be doing them a great disservice. Decreased understanding and feelings of abandonment and helplessness can prevail. The primary purpose of this research was to explore the resources currently available to support a child with a critically ill adult member of their family (or significant other) in ITU, whom they may wish to visit. Available support for nursing staff that enables them to do this has also been explored. A descriptive postal survey was used in 2003 to collect data from 46 adult general and cardiothoracic ITUs nationally. The findings illustrated that there was a lack of written policy and very little written information for adult visitors regarding the needs of children who have a loved one in ITU. There was also a dearth of resources for nursing staff pertaining to children and their needs (when visiting a critically ill adult), including a lack of any formal or informal education on the subject. Clearly, restrictions were still being imposed on children visiting a loved one either by the well parent/carer or by the nursing staff, mainly for reasons unsubstantiated by research.
Healthcare providers (registered nurses, physicians and enrolled nurses) at intensive care units (ICU) in Norway and Sweden participated in a survey, the purpose of which was to investigate their perceptions of the needs of critically ill adult patients' significant others based on the Critical Care Family Needs Inventory (CCFNI). Four categories were revealed through qualitative content analysis of handwritten responses to the open ended item. 'The need to feel trust in the healthcare providers' ability' and 'the need for ICU and other hospital resources' had the highest response frequency and, together with the category 'the need to be prepared for the consequences of critical illness', confirmed factors revealed in previous statistical analysis that employed this structured tool. The fourth category concerned 'patients' needs and reactions in relation to significant others'. In conclusion, needs not previously explored when examining the CCFNI, but perceived by healthcare providers to be important to significant others in ICUs, were revealed by means of quantitative and qualitative analyses employing the instrument. These findings can contribute to the development of interventions that could be tested to evaluate whether they improve the ICU experiences of patients and their significant others.
The staff of Patient and Family Support Services oversees the developmental, psychosocial, and spiritual care of the child in the cardiac intensive care unit. Staff collaborate with medical team members, as well as the patient's family, to promote holistic care. This article describes the roles and responsibilities of the child life specialist, the social worker, and the chaplain and identifies discipline-specific assessment techniques and interventions. The article highlights identified needs of children and their families, offering tools and interventions health care clinicians can use in the cardiac intensive care unit.
To describe custodians' experiences of their child's visit to an ill/injured nearest being cared for at an adult intensive care unit (ICU), their thoughts about the visit in relation to the child's health/well being and who initiated the visit.
Custodians can feel undecided about whether to allow their children to visit the ICU or not. They wonder how important it is for the child to visit, as well as the consequences, and attempt to protect the child from information/experiences that could provoke anxiety or threaten the child's health.
Quantitative and descriptive.
Thirty custodians answered a questionnaire.
It was mainly custodians and their children and not staff who initiated the children's visits. Many children were not informed by staff and the responsibility lay instead with the custodians. The importance of giving children adequate information before, during and after the visit was pointed out. The custodians reported that their child's reactions to the visit differed, i.e. reactions reflecting happiness but also sadness; the visit was good for the child, increased awareness of the nearest's condition and appreciation of the hospital staff and their work; if the visit did not take place the child would be left with thoughts and conjectures; their children were not frightened when they saw the equipment and instead they became curious; older children were more focused on the patient while younger children were interested in both the equipment and the patient. Many children asked questions/made comments during the visit. Many custodians were of the opinion that visiting is not a risk to future health and well being.
This issue must be addressed and discussed and strategies need to be developed to improve the nurses' obligation to involve visiting children in the care that is/should be provided to a member of the patient's family.
Nurses need to take more initiative when discussing children's visits with the custodians. Nurses also need to discuss how to meet, inform, support and care for visiting children and their custodians in relation to health and well being. Recommendations/guidelines about children visiting that take both the patient's and child's needs into consideration needs to be developed based on scientific knowledge. Findings from this study may draw attention to children visiting ICUs and encourage nurses to discuss children visiting with custodians and to develop family-centred care at the ICU that includes children.
Levels of illness conceptualization were studied among children with diabetic siblings. Results revealed a significant association between pretested Piagetian level of cognitive development and illness conceptualization. Children with ill siblings, especially those at the formal operational level, demonstrated lower conceptualization levels than did children with healthy siblings.
Relatives of critically ill patients were able to identify their needs during the intensive care phase of hospitalization. The universal need identified as very important was the need for hope. Other important needs were concerned with receiving adequate and honest information and feeling that the hospital staff members were concerned about the patient. Although several of the needs appeared to be of great concern to relatives, all the needs were considered very important by at least one relative. The majority of needs were perceived as being met consistently. Various resources were used by the relatives to meet their needs; however, specific needs were expected to be met by physicians and nurses. Since many relatives have similar needs, the use of a group process to deal with them should be investigated. A group process allows for sharing and support among the relatives and also allows one staff member to work with several relatives. The relatives perceived the role of health care personnel to be patientcentered only. If the patient is a member of a family, then the family and staff should recognize that the health care personnel are helping relatives because it is a crucial part of total patient care. This area in providing total patient care needs to be studied carefully. The relatives of critically ill patients have important needs in this crisis period. By recognizing these needs and evaluating how they are being met, total patient care will involve the family. Such involvement is essential to the care of the critically ill patient.
Healthy parents' perceptions of their competence to meet children's needs during the terminal illness of the other parent were measured on five major domains of parent-child relationships and parental functioning central to children's healthy development. Significant declines from pre-illness competence were perceived, of which the greatest were in emotional sensitivity and responsiveness, and ability to set limits and impose discipline. Implications for the development of preventive intervention strategies are discussed.
The link between risk and resistance factors and psychological and physical distress was examined cross-sectionally and longitudinally over a 1-year period. Risk factors are negative life events and avoidance coping strategies and, for children, parental emotional and physical distress. Resistance factors include self-confidence, an easygoing disposition, and family support. We studied a community sample of over 400 adults and their children. Each of the predictor variables was significantly associated with concurrent and future psychological and physical distress among adults. Moreover, the sets of risk and resistance variables predicted both current and subsequent distress among adults even when the stable component in distress was controlled. Parental risk and resistance—especially family support and maternal dysfunction—also predicted concurrent psychological and, less strongly, physical distress among the children. The associations involving family support and maternal distress and avoidance coping held in cross-sectional analyses even when the stable component in children's distress was controlled. Although family support was associated with children's future psychological and physical distress in zero-order correlations, the relation did not hold when children's initial distress was controlled.
The effect of sibling visiting in a neonatal intensive care unit was studied. Sixteen siblings of 13 infants were randomly assigned to a visiting or nonvisiting group. Behavioral patterns were measured by questionnaires administered to the parents and by direct observation and interviews with the children. There were no significant changes in the behavior of the children following the birth of their sibling, and there was no significant difference between the behavior scores of the two groups 1 week after the experimental (or control) intervention. The visiting children did not show signs of fear or anxiety during the visit. These data suggest that sibling visiting to a neonatal intensive care unit is not likely to be harmful and might be beneficial to the siblings and their families.
IT IS COMMONLY assumed that the combination of hospitalization and illness has long-lasting undesirable psychological consequences for children. Although this may be true as a general rule, the findings of systematic, quantitative research provide no certain answer. In some cases the conclusion that relatively brief experiences of this type are psychologically harmful has been strongly influenced by emphasis on the ill effects of long-term, mother-child separation, such as those made by Bowlby.1 Whether or not such emphases are applicable to brief hospitalizations is open to question.
Data from the study of brief hospitalization and illness are inconclusive. Studies of the incidence of particular symptoms following hospitalization (eg, Levy2) are inherently uninstructive in the absence of normative data or data from appropriate control groups.
Studies of changes in children's behavior after hospitalization have been popular and influential, most commonly leading to the conclusion that hospitalization is upsetting in general.
This paper examines the experience of siblings who live with a child with a life-threatening illness, and the adaptive means they mobilize to negotiate this unique life stress. The author highlights the themes which have emerged from her psy-chotherapeutic work with siblings by the children's statements and drawings, and stipulates intervention strategies. Key issues in bereavement are also discussed. The siblings' experience must be seen within a “normalized” framework at the juncture of three perspectives: the family system; a focus on life rather than on death; and a view to positive adaptation.
Studied effects of chronic stress of terminal cancer in 29 middle class families that had lost a parent to the disease. Data were collected through a semi-structured family interview, questionnaires answered by each family member, and a brief clinical description of the families. Results show that the more family members able to share information and decision making, the greater the likelihood of adjusting effectively after parental death. Women patients were less often informed of the terminal nature of their illness than men. When the cancer victim was the mother, families rated lower on communication. This suggests that professionals dealing with maternal death need to help the family transfer communication functions to other members. The more inwardly directed the family was, the more likely it was to make effective use of external support systems. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Explored possible differences in perceived environmental stress of 233 parents who experienced a planned admission of their children into an intensive care unit (ICU) and 262 parents whose children were admitted to the ICU under unexpected circumstances. Ss were administered a parental stressor scale to assess perceived stress stimuli arising from the physical and psychosocial aspects of the ICU, and the State-Trait Anxiety Inventory. Results support the view that admission of a child to an ICU, whether planned or unplanned, is stressful. However, Ss who experienced an unexpected admission had signficantly higher anxiety scores than Ss who knew that their child would be admitted to the ICU. (19 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Studied 50 pairs of 5-14 yr old brothers to test the hypothesis that when siblings differ significantly in culturally valued characteristics, a less well-endowed child will show more hostility toward his siblings than will a more favorably endowed child. Ss were administered the Family Relations and Slosson IQ Tests and the California Test of Personality, and were divided into 4 groups (the happily ambivalent, the problematic, the stressful, and the tragic relationships) on the basis of the comparative scores of each pair of brothers on the personality and the IQ tests. Generally, the results support the hypothesis and suggest that although the problems of the less adequate child do not cause his sibs to feel personally threatened and hostile toward him, the invidious comparisons which are made between them give rise to feelings of low self-esteem and resentment of the more able children in the family. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Thesis (M.S.N.)--Yale University, 1984. Includes bibliographical references (leaves 98-102).
This article describes the utilization of nursing research findings in a coronary care setting. A standardized nursing care plan, based on Hampe's eight research-identified needs of grieving spouses, was developed by staff nurses in an intensive care unit. The 13 spouses of acutely ill coronary patients who had received specific nursing interventions reported more of their needs were met by nurses than did 13 spouses on whom base-line data were collected prior to the adoption of systematic nursing interventions.
Although numerous references are made to the stressful, deleterious effects of chronic or terminal illnesses and handicaps on the siblings of pediatric patients, very few studies have been conducted using comparison groups. The present study compared the adjustment of 3- to 13-year-old siblings of pediatric hematology (N = 62), cardiology (N = 57), and plastic surgery patients (N = 37) with healthy siblings (N = 46). The adjustment measure was an objective, paper-and-pencil measure of children's emotional and behavioral problems, the Louisville Behavior Checklist. On analyses of covariance, the patient groups were more likely to show symptoms of irritability and social withdrawal, and the differences between illness groups approached significance on measures of fear and inhibition. Among the younger children, ages 3 to 6, there were significant group differences, with the siblings of patients undergoing plastic surgery showing the highest level of general psychopathology. Among children ages 7 to 13, male siblings of patients with blood disorders were more likely to show signs of emotional disturbance than female siblings. No group differences were noted on measures of aggression or learning problems. Significant interactions between sex and age relationship to the child were noted on scales of social withdrawal, inhibition, immaturity, and irritability.
Saying good-bye to a dying child is hard; but for the parents and family of a child who dies following a traumatic injury, it is even more difficult. The nurse in the pediatric intensive care unit is in a position to help the parents and family start this difficult transition.
More research is needed to assess and address all areas of concern to family members. Options such as family discussion groups, patient-family or psychiatric liaison nurses, or clinical nurse specialist involvement might be used to improve family care and coping. Family perceptions of important needs warrant further research, and nursing interventions such as orientation-education programs, descriptive visitor pamphlets, nurse-family interaction sessions, and open or flexible visiting policies need additional investigation. It is only through continued assessment, evaluation, and intervention that critical care nurses can achieve total care for the ICU patient and family.
This phenomenologic study describes the effects of adult hospitalization in a critical care setting on the family as perceived by patients, spouses, children in the family, and nurses. Tape-recorded interviews were completed with 12 spouses, 9 patients (2 mothers and 7 fathers), 11 children, and 12 nurses. Responses were analyzed by using systematic thematic content analysis. Themes that emerged with regard to how this event affected the family unit and individuals in the family included (1) lack of communication among family members; (2) protecting children from anxiety-provoking information; (3) overriding threat, exemplified by feelings of vulnerability, uncertainty, intense emotions, and physical illness in children; (4) disruption of normal home routines; (5) changes in relationships; and (6) role conflict. Nurses' perceptions of the impact of this event on parents, spouses, and children demonstrated some incongruences with perceptions of patients and family members. Practice implications from this study include the following nursing actions: (1) eliciting more comprehensive information about relationships among family members and the impact on the family; (2) developing mechanisms to promote communication among family members; (3) making referrals to community resources such as school nurses, counselors, and chaplains; and (4) teaching nurses and parents ways to help children cope with this event.
Surgery and the critical illness of a loved one can be a situational life crisis for family members. Establishing a meaningful nurse-family relationship is critical to the success of all other interventions. Close contact with families, and an awareness of the impact of the family on patient outcomes make nurses the ideal professionals to provide care to families during this crisis.
While previous research has studied the impact of chronic illness on the patient or spouse, the impact on the marriage, the child, the parent-child relationship, and the family's functioning have been relatively ignored. To date ther is no known study of the impact of a mother's chronic illness on the family. The purpose of the current exploratory study was to test a set of interrelated hypotheses about family functioning with the mother's chronic illness from the spouse's perspective based on a family systems perspective. Data were obtained from standardized questionnaires from 48 fathers with young school-age children whose wife had either breast cancer, diabetes, or fibrocystic breast disease. Results of a path analysis revealed that the number of illness demands the father experienced was a significant predictor of his level of depression. More demands resulted in higher depression scores. Marital adjustment was significantly affected by both the father's level of depression as well as by his wife's type of disease. Spouses of women with breast cancer had significantly higher levels of marital adjustment than did partners of the other women. More depressed spouses had lower levels of marital adjustment. Both illness demands and level of marital adjustment significantly predicted the type of coping behavior the family used. More frequent illness demands and higher levels of marital adjustment were associated with familial introspection, that is, coping behavior characterized by frequent feedback, reflection, and discussion in the family. The quality of the father-child relationship was significantly affected by this type of coping behavior. Families characterized as introspective had fathers who reported more frequent interchange with their children.(ABSTRACT TRUNCATED AT 250 WORDS)
The purpose of this study was to investigate characteristics of families, specifically their adaptability, cohesion, and coping mechanisms during a child's intensive care hospitalization. The sample consisted of 30 families with children hospitalized in a pediatric intensive care unit. The Family Adaptability and Cohesion Evaluation Scales (FACES-III) and the Family Crisis-Oriented Personal Evaluation Scales (F-COPES) were used to collect data. Results indicate that the families were, as a whole, healthy in their levels of functioning; their dimensions of adaptability and cohesion were balanced. The families studied utilized a variety of coping mechanisms, and specific characteristics were identified that enabled the families to adjust to the child's intensive care hospitalization.
Numerous studies examine the impact of chronic childhood illness or disability on well siblings with a variety of sometimes contradictory findings. To help make sense of the available information, this paper presents an examination of the literature in light of the three main theoretical perspectives employed by researchers in the area. The major philosophical assumptions, conclusions, and methodological weaknesses associated with each perspective are outlined. From the coping-based literature, five successful coping strategies employed by families of chronically ill or disabled children are described. Suggestions for health care professionals on how to encourage positive sibling adaptation through the promotion of these strategies are given.
The development of social referencing in 40 infants aged 6-9, 10-13, and 14-22 months was investigated in this study. Social referencing was defined broadly to include children's looks toward parents, their instrumental toy behaviors, affective expressions, and other behaviors toward parents. Children's looks at parents were more selective with increasing age, with older infants preferring to look directly at their parents' faces and younger infants showing no preference for looks to faces over looks elsewhere at the parent. Younger infants looked most often when their parents expressed positive affect, whereas older infants looked most often when parents displayed fearful reactions toward a stimulus. Evidence of a behavioral regulatory effect on instrumental toy behaviors was found only among infants 10-13 months of age. However, only infants older than 14 months of age inhibited touching the toy until after referencing the parent. On some measures these older infants showed a preference for toys associated with fearful messages. Affective expressions were in line with positive and negative behavior toward toys. No support for mood modification or simple imitation as explanations for the effects was found. Results indicated that the looking behavior of younger children may function differently than that of older children, and that social referencing involves a number of component skills that develop during the end of the first year and throughout the second year of life.
The purpose of this research was to gather information about the level of need satisfaction as perceived by family members and the extent to which critical care nurses are able to accurately identify those areas of high and low family member satisfaction. A descriptive-comparative study was completed. Participants were 92 critical care nurses and 52 family members of patients in the critical care units of two large general hospitals. Family members reported being more satisfied than dissatisfied for 43 of the 46 needs. They were relatively well satisfied with those needs that pertained to personal support systems, visitation, and information. They were less satisfied with those that related to psychologic aspects, the environment, and institutional support services. Critical care nurses were moderately accurate at identifying the extent to which family members perceive their needs as being met. However, numerous items were identified for which marked disagreement was found.
Hospitalization of a family member in an intensive care unit is a stressful event for the entire family. Nurses should be concerned not only with the hospitalized patient but with the family, as a unit. Attention is often focused on the patient and to a lesser extent on the spouse. The needs of the children may be neglected. To reduce the long-term negative effects of the crisis event on the life of the child, appropriate interventions should be made at the time of the crisis. It is important for nurses to recall emotional and cognitive phases of growth and development when counseling parents. This information is used to help the nonhospitalized parent identify the needs of the child. The nurse can act as a resource person for this parent in planning strategies that will prevent or alleviate problems for the child.
The effect of chronic illness on siblings is a topic in which limited current research has been done. Typically the sibling relationship is one of the strongest of family bonds, and a chronic illness may help or hinder that relationship. Chronic illness in a family can interfere with a well sibling's physical and emotional growth and development as well as the development of the family as a whole. Assessing sibling responses based on developmental levels and providing anticipatory guidance for parents can foster optimal adjustment to a difficult situation. Personal and professional experiences will be cited to illustrate the complex process of adjusting to having a brother or sister with a chronic illness.
The purpose of this study was to identify and describe cognitive and behavioral coping strategies used by siblings of pediatric oncology patients. Fifteen families with 26 siblings between 7 and 11 years of age were studied. Parent data were obtained from an open-ended interview and a questionnaire. Sibling data included open-ended interviews using psychosocial assessments through puppet play, kinetic family drawings, cartoon story telling, a sentence completion test, and a limited number of direct questions. Content analysis of sibling data revealed major stressor themes of loss, fear of death, and change. Further analysis of sibling data pertinent to coping efforts led to the development of a taxonomy of cognitive and behavioral coping efforts.
Most previous research on how a child's cancer affects his or her siblings has relied on various methods but has not involved direct interviews with the children themselves. In this study of the siblings of young cancer patients, youngsters tell their own story, describing their experience of cancer in terms of their emotional responses.
Thirty-three index children, aged 12-18 years, with a non-hospitalized multiple sclerotic patient and 33 control subjects were administered the Family Environment Scale, a scale that measures perception of family environment on the dimensions of family relationships, personal growth, and system maintenance. Subjects in the index group were each matched with a control subject on the basis of sex, age, number of siblings in the family, and socioeconomic status. Results indicated that in comparison with control group families, index group families were higher on the conflict subscale and lower on cohesion, intellectual-cultural orientation, moral-religious emphasis, and organization subscales. These findings are explained using a family systems analysis. The potential assets of utilizing a family systems orientation to explain these findings and the heuristic values of this framework are highlighted.
The effects of hospitalization on ill children and their parents have been studied repeatedly, but effects on well siblings have received little attention. This investigation was designed to investigate sibling reactions when a brother or sister is hospitalized. The changes in feelings and behavior as reported by 123 siblings of hospitalized children and their parents from a large teaching hospital were studied. Young siblings were interviewed, while older siblings and parents were given a questionnaire. Siblings reported an average of four changes each. The number of changes reported by siblings was related significantly to several factors, such as sibling age, relationship of sibling with hospitalized child, explanation, fear of getting the illness, residence of sibling during hospitalization of the sick child, and perceived changes in parenting.
Even though siblings reported 519 changes, their patents reported only one-half that number. Parents of hospitalized children may not know how their well children are reacting. For this reason, health professionals need to interview siblings as well as parents to assess sibling welfare accurately. In addition, health professionals can help siblings by insuring that an adequate explanation is given to siblings and by encouraging parents to maintain siblings at home, either with a sitter or family members.
How siblings influence and impact each other is an aspect of family life only recently brought to light. This, in turn, has opened questions of how children with special needs affect their brothers and sisters. Initially seen in the context of being potential assets or liabilities to an ill or disabled child, siblings' rights and needs are now being acknowledged. There is no question about whether they are affected by a child with special needs. Rather, the thrust of inquiry is in the direction of determining in what ways and to what extent siblings are affected. The challenge and responsibility of parents and professions is to help siblings achieve their fullest potential despite stress and anxiety. When there is congruence between demands and personal resources to meet the demands, siblings can thrive in spite of difficulties. With support, understanding, and companionship siblings rise to the challenge of lives fraught with intense emotions, adapting and accommodating as they learn from experiences and add to their repertoire of coping skills. It is encouraging for health care that there is recognition of the fact that ill and handicapped children have brothers and sisters as well as parents. Emphasis on siblings is a crucial development in human understanding and respect for families with special needs, helping them to lead normal lives integrated with the community.
Theory and research in psychological stress has shifted from an earlier perspective of environmental inputs or outputs to a relational one. Stress is now treated as harms, threats and challenges, the quality and intensity of which depend on personal agendas, resources and vulnerabilities of the person, as well as on environmental conditions. This implies a knowing person who construes or appraises the significance of what is happening for his or her well-being. Such a “paradigm shift” requires a different approach to stress measurement, one that takes into account the cognitive activity evaluating the personal significance of transactions, and examines the multiple specific variables of person and environment that influence the appraisal process. The need for a different approach to stress measurement has generated research by the Berkeley Stress and Coping Project on what we have called daily hassles and uplifts.
Based on interview data from 56 families, the authors describes parents’ views of how siblings participate in and respond to a short-term pediatric hospitalization. Specific patterns of sibling contact with the hospitalized child are presented and the role of siblings in the family's overall adjustment to the situation is explored. Data revealed that most siblings maintained regular, direct contact with the hospitalized child. Almost half the siblings participated actively in accommodating family life to the hospitalization by assuming additional responsibilities in only 16 percent (n=17) of the siblings. Negative responses clustered in those siblings cared for outside their own home and in the 4 to 11 year age range.
A major situational stressor experienced by parents is the serious illness of a family member, and perhaps no event is more stressful than the admission of a child to an intensive care unit (ICU). This study was designed to identify ICU environmental stressors experienced by parents when a child is admitted to a pediatric ICU and to examine possible differences in the perceived stress stimuli and the overall stress impact between mothers and fathers. Thirty-seven father-mother dyads whose children had recently been discharged from a pediatric ICU in one of four midwestern hospitals were subjects for the study. Data were collected using the Parental Stressor Scale: Pediatric ICU (PSS:PICU) and Spielberger's State-Trait Anxiety Inventory. Findings suggest that mothers and fathers found the total ICU experience equally stressful. Mean State Anxiety scores were not significantly different for the two groups. In a comparison of mean scores on the seven dimensions of the PSS:PICU, mothers and fathers differed for the dimensions “Child's Behavior and Emotions” and Parental Role Alteration. Results suggest the need to prepare both parents for the child's behavioral changes and for their altered parental roles when a child is admitted to an ICU.