Week 5 discussion

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Listening to the Family’s Voice Nordic Nurses’ Movement Toward Family Centered Care Erla Kolbrun Svavarsdottir, RN, PhD University of Iceland

Clinical nurses, teachers, and researchers in the Nordic countries are faced with increasing expectations in identifying their contribution to knowledge development in family nursing at national and international levels. In this paper, I provide an insight into the contribution of Nordic nurses to family centred care (family system nursing), present findings from an integrative review on family nursing in the Nordic countries, share with you examples of family level interventions, and offer some ideas regarding where we might want to direct our focus in family system nursing in the future.

Keywords: family nursing in the Nordic culture; integrative review; nurs- ing interventions

Family nursing is a phenomenon that has, for a long time, been of inter-est to me. First of all, our family roots here in the Nordic countries are strong and our family trees are well documented, 300 up to 1,000 years back. It could even been argued that in some of the Nordic countries, our family trees are the highest trees in the country (at least in Iceland, but as you might know, we only have bushes there!). Also, in the North, family life is highly valued; our health care systems emphasize offering health care services to every citizen and their families. Additionally, in the Nordic cul- ture, parental and sick leaves are offered as a way of helping families reestablish themselves when a new family member is born or when a fam- ily member becomes chronically ill or has an acute health problem. Therefore, following the development of family nursing within the Nordic countries has been encouraging. Witnessing, at the same time, within our own profession the strong willpower nurses have to follow their own belief in the importance of involving families in their care is fascinating; and

Journal of Family Nursing Volume 12 Number 4

November 2006 346-367 © 2006 Sage Publications

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Keynote Address of the 2nd Nordic Family Nursing Conference in Kalmar, Sweden

watching how nurses, as highly skilled health care professionals, have become even more focused and determined to involve families in their care, despite political and social pressure to lower the costs within our health care systems, has motivated and stimulated me as a nursing researcher to develop and conduct a program of research where the findings could be applied to clinical practice.

So, where are we at in the Nordic countries, in our development of knowl- edge within the field of family nursing? What is our international contribution to family nursing? Where do we need to focus our attention in clinical prac- tice, teaching, and research, to intervene in meaningful ways with families, and to offer evidence-based practice to families? The purpose of my address today is (a) to provide insight into the contribution of Nordic nurses to fam- ily centered care, (b) to present findings from an integrative review on family centered nursing in the Nordic countries, (c) to share with you examples of family level interventions that have been developed at the Faculty of Nursing of the University of Iceland, and (d) to offer some ideas regarding where we might want to direct our focus in family nursing in the future.

Introduction

Our socialized medicine health care system in the Nordic countries gives nurses excellent opportunity to work with all types of families, families from various social classes, families with diverse cultural background and/or families with different sexual orientation. Families who experience chronic illness among one of its members are families who in addition to handling their own life situation on a daily basis, need to deal with additional situations related to the chronic illness. These families have been found to experience distress, frustration, ambiguity, anxiety, and suffering. Chesla (2005) empha- sized, in an interesting article focusing on nursing science and chronic illness, that listening to family members’ everyday stories of chronic illnesses—by being committed to and by facilitating the individual to build on an illness narrative that makes sense and adds value to the experience—is healing within itself. Having someone listen empathically to his or her story allows the person to hold on to or have hope mirrored back and affirmed and to pro- vide opportunities for reflection. By having someone listen to their story the chronically ill and his or her family members can gain confidence in the direction and possibility of a life constructed around chronic illness and its changing demands. However, Chesla emphasized that empathic listening is

Svavarsdottir / Listening to the Family’s Voice 347

not enough within itself, the role of nurses and health care providers in sup- porting and sustaining emphathic connection within families needs more attention and needs to be studied further. Similarly, Wright and Leahey (2005) point out that listening to illness stories is not only an art but that there is also this powerful need, for family members experiencing chronic illness, to express and communicate their experience. According to Wright and Leahey, nurses commonly believe that listening to families also entails an obligation to do something to fix whatever concerns or problems are raised. In many cases, however, Wright and Leahey point out, the most therapeutic move, intervention, or action the nurse can perform is showing compassion and offering commendations.

Wright and Bell (2004) call attention to the fact that interventions in family nursing have mainly focused on the behavior of the nurse, but inter- ventions occur, function, and take place in relationships. Therefore, it is important to focus on family members’ response to interventions. For more than a decade now, Canadian and Northern American family nursing scien- tists have called for additional family nursing intervention research. More interventions have been developed and tested, and at the same time, our understanding of what is beneficial to families that we are caring for and what is not, is starting to become clearer. There is, however, a long road ahead of us; more work in relation to teaching, developing, and conducting family nursing research is needed to influence clinical practice and support evidence based practice.

Within the past 6 years, studies within the field of family nursing, where the focus has been on family response to nursing intervention, has shown that families dealing with chronic condition or illness among one of its members have been able to identify interventions that were helpful to them. Out of those interventions, the outstanding work, based on the theoretical founda- tion developed at the Family Nursing Unit of the University of Calgary, has proven to be of great importance to families dealing with chronic illnesses (Wright, Watson, & Bell, 1996). These interventions have focused on com- mendations, listening to the silent side of a family intervention, constructing a genogram, interventive questioning, offering educational information, nor- malization, humanistic attitude of the nurse and exploring the illness experi- ence in the presence of other family members (Bohn, Wright, & Moules, 2003; Duhamel & Talbot, 2004; Limacher, 2003; Limacher & Wright, 2003). Furthermore, for families of repeatedly hospitalized children with chronic conditions, a family focused stress-point intervention offered by nurses has been found to have an impact on satisfaction with family functioning and better parent coping (Burke, Harrison, Kauffmann, & Wong, 2001), and

348 Journal of Family Nursing

Svavarsdottir / Listening to the Family’s Voice 349

Mexican American families have reported helpful family nursing intervention to enhance family nurturing, support, and socialization (Niska, 1999). All these research scientists have focused their attention on the importance of studying the process within the context of the relationship between the nurse and the family, rather than to focus only on the results or the outcome that is important to graph the effect of a family level intervention for the families.

Developing Family Nursing Interventions

There is a need for nurses to be creative in their effort to develop and implement family nursing interventions. I would like to share with you a letter that one mother read to a group of family members who participated in a family-level intervention study that is still in progress at the Faculty of Nursing of the University of Iceland. The study was developed as a thesis project for families who had an adult family member with an eating disorder. Five to 6 family members participated in each of the four groups created a total of 21 family members, each group session lasted for 90 minutes and the intervention was distributed during a period of 4 weeks (the groups met once a week). The family members consisted of parents, stepfathers, spouses, and adult siblings, but the family members (all females), with the eating disor- ders, participated in other separate groups. The goal of the intervention was to offer the family members information and to educate them about the dis- ease, to offer support, and to allow the individuals to express their feelings and to share their experience of being in a family with a family member of an adult female with anorexia or bulimia.

The Letter That a Mother Read to the Intervention Group in Our Second Session “Being the Mother of an Adult Daughter With Anorexia”

Up until now I have found it very hard to comprehend my daughter’s eating disorder and its consequences. I have in fact not known where in the course of events the eating disorder came in, whether it is a cause or a consequence of other psychic disorders or character flaw. I have therefore spent an enor- mous amount of time and energy defining and creating my own explanations of the cause to her illness and I always run into walls. Not being able to explain the reason or the reasons has caused me great pain, pain which more or less has been characterized by bad conscience and a feeling of guilt. I must have failed her, I can not have been the mother I always wanted to, I have

350 Journal of Family Nursing

placed my needs above hers, I have not listened, not seen, not given the right advise, not been there when she needed me, not been helpful enough, not done this and not done that—and mostly, I have not done all the things I should have done. Along with the feeling of guilt came a longing to do every- thing I possibly could to make her feel better, but instantaneously I have real- ized that that no matter what I say and what I do, it does not help; the reason being that I am a spectator and not a doctor, a layman and not a specialist and the “good advice” that I have, in some sort of helplessness, been giving her, has proved to be good for nothing. At the same time, I have realized that my firm belief that love and warmth are the most effective fighting tools, was a disillusion—but I have had no other fighting tools available, although they have, of course, taken on various forms.

The past few years can be adequately described by “standing up and falling again” as all my feelings have been controlled by her, when I sense, see or hear whether she is feeling well or not. This happens despite continuous conversa- tions with my inner self, where I openly declare that in order to be able to sup- port her I have to be strong myself. When I hit bottom I am scared, really scared, I fear for her life and her health and it is truly hard to be haunted by such constant fear. This feeling of fear is accompanied by an urge to pry into her affairs, I have to know everything, how she is sleeping, what she is think- ing, what she has been doing, who she has spoken to, who she has met; I behave like an abnormally jealous lover and I am not really at ease until I know as much about her as I know about myself. It is therefore almost unbearably painful when she does not answer the phone or does not let me know her whereabouts. This is followed by long restless walks between rooms, inquiries at her friends and relatives, driving by to see if there is a light in her window, sleepless nights and exhausting nightmares. I know that this limits her right to live her own life, despite her illness, but when I have hit bottom that thought does not even occur to me. My thoughts, which are obsessive to say the least, dominate and my suffering does not give way until I know everything. Then I am relieved. When everything seems in order I feel well, I am happy and pleased and I can work all day long, I feel very optimistic and confident that from now on everything will be all right and I do not need to fear for her in the future. At this stage I do not have the strong urge to spy on her and our rela- tionship is more natural. But before you know I hit bottom again and I go through the same suffering all over again. Maybe, this state of mind is best described by saying that you are thrown into an emotional disarray, you are swung between heaven and hell and you really have no control over the situa- tion or where you will end up.

When the mother was done reading her letter (experience) to the group, there was a long silence. Everyone in the group seemed to be touched and to understand her feelings. For a while, I thought that no one was going to inter- rupt the peaceful quiet atmosphere that filled the room (I wanted the group to

start the reflection). Then, all of a sudden, one mother started very calmly to talk to the group and to relate to certain events in the story, to point out similar and different experiences and to share her own life experience. Then, before I knew, and very naturally, the group members started to thank the mother for such a good letter, for her encouragement and how much they could relate to her experience. The reflection from the group was helpful to the mother, she felt emotional and thankful to the group for sharing how her story had an impact on them and how much alike many of them had been feeling. The mother also shared with us how much relief she felt by writing her story down and reading it to the group. For me, this mother captured so wonderfully in her story what so many families are dealing with when faced with chronic illnesses; that is the pain, guilt, willingness to help but feeling so helpless, suffering and the disap- pointment when realizing that the only tools—that is, love and warmth—many so strongly believed could be used to fight the disease, were not working.

Next, I would like to share with you results from an integrative review of Nordic families of children and adolescents with chronic illness.

Integrative Review of Family Centered Nursing Care to Families of Children and Adolescents With Chronic Illness

An integrative review is a specific review method that summarizes past empirical or theoretical literature to provide a more comprehensive under- standing of a particular phenomenon or healthcare problem (Wittemore & Knafl, 2005). In that way, integrative reviews have the potential to build nursing knowledge, information research, practice, and policy initiatives. Evidence-based practice initiatives have increased the need for and the pro- duction of all types of literature reviews. Wittemore and Knafl (2005) empha- size that integrative reviews are the broadest type of research review methods allowing for the simultaneous inclusion of research, theories as well as empir- ical literature to more fully understand a phenomenon of concern. Although socialized health care is offered to families living in the Nordic countries, little is known about how families handle a chronic illness of a child family member, both within a hospital setting and the community setting. Neither do we know what families need the most when caring, on a daily basis, for their chronically ill child nor what family nursing interventions are most helpful, beneficial, and supportive to families to sustain or improve the family health.

The purpose of the integrative review presented here was to review evi- dence brought forth in the Nordic countries between the years 2000 and

Svavarsdottir / Listening to the Family’s Voice 351

2006, on families of children and adolescents with chronic illnesses and on family centered nursing care offered to these families.

Methods

Several strategies were used to identify relevant reports, including a computer-assisted search using the key words of family within each of the Nordic countries in the Cumulative Index of Nursing and Allied Health Literature and an analysis of reference lists. The inclusion criteria for the analysis was theoretical and research reports focusing on families (mothers, fathers, and siblings) of children or adolescents with chronic illnesses. Reports were excluded if the focus was on family-centered nursing care and policy development, education, measurement issues in family nursing research or unpublished dissertations. There were 1,015 reports identified from 2000 to 2006: 328 Finnish, 182 Norwegian, 43 Icelandic, 662 Swedish, and 131 Danish. However, narrowing the search down to “family nursing of children or adolescents with chronic illness” resulted in a sample of 30 reports (8 Finnish, 3 Norwegian, 8 Icelandic, and 11 Swedish). No research report that met the study criteria was identified from Denmark.

The samples ranged in size from 1 family (a case study) to 211 families (parents of children with asthma); on average, 51 families participated in the studies, which is reasonable given the range of methods used (both quantitative and qualitative). The samples included mainly parents (moth- ers and fathers) or siblings of children and adolescents with chronic ill- nesses (e.g., asthma, cancer, diabetes, epilepsy, congenital heart disease, and psychiatric disturbance or mental illnesses) (see Table 1). Studies focus- ing on families of disabled children were excluded from this analysis.

Data displaying matrices were constructed to display all coded informa- tion from each of the 30 reports by focusing on the purpose, key concepts, theory or conceptual framework, design, qualitative tradition, sample, data sources, statistical tests, findings, recommendations, strengths, and weak- nesses. These matrices, and the original reports, were then critically reviewed and compared to identify knowledge development within family nursing in the Nordic countries for families of children and adolescents with chronic illnesses.

Findings

Chronic illness is defined in this analysis as an illness that has been med- ically diagnosed and has lasted for at least 2 to 3 months and an illness

352 Journal of Family Nursing

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where the infants, children, or adolescents (up to 18 years) need regular monitoring and medical attention because of the illness.

The studies were classified according to Cooper’s (1998) and Whittemore and Knafl’s (2005) ideas on analysis in research reviews—that is, based on the topic and methodology used (e.g., descriptive studies, lived experience, correlation or comparative designs and interventions). Then the data were compared to identify patterns, themes or relationships and, when patterns were distinguished, a conceptual map was drawn that induced majority of the variables or the identified themes (see Figure 1).

When analyzing the family members’ perspective when one of its child members has been diagnosed with a chronic illness, the focus in the reports, was generally on the parents’ and/or the child’s perception. Parents and their child with cancer have been found to report emotional and physical distress to be the most frequent aspect of distress when the child is in cancer treatment (Hedström, Haglund, Skolin, & von Essen, 2003). Everyday family strains have been identified for families of children with cancer and have been incor- porated into two essential themes—that is, “as a broken life world” and an “immediate striving to survive” (Björk, Wiebe, & Hallström, 2005, p. 268). For these families, secure everyday life ceased to exist and was replaced by fear, chaos, and loneliness. Parents of children diagnosed with cancer for 7 to 8 months have been found to report the lowest well-being when compared to mothers of children diagnosed within 6 months or to mothers of children diag- nosed within 24 months. Additionally, a significant gender difference has been reported between parents, as 56% of mothers and 26.3% of fathers of children or adolescents with cancer have been found to belong to a clinically or prob- lem indicative stress group (Svavarsdottir, 2005a).

Parents of a child suffering from asthma have been found to experience uncertainty about how to handle their child’s illness. Feelings of helpless- ness and guilt, adaptation to everyday life and developing coping strategies are daily experiences for these parents (Trollvik & Severinsson, 2004). Parents have also reported to be living a strenuous life and their actions to be both protecting and liberating (Dalheim-Englund, Rydstrom, & Norberg, 2001); and for adolescents with diabetes, perceived parental care, control, and involvement have been found to significantly predict well- being (Graue, Wentzel-Larsen, Hanestad, & Søvik, 2005).

Parents of children and adolescents with cancer have been found to report that giving emotional support to the child and to other children in the family, are their most time-consuming and difficult caregiving activites (Svavarsdottir, 2005b). Furthermore, Svavarsdottir (2005c) found changes in mothers’ and fathers’ perception of caregiving demands and well-being during a 1-year time

Svavarsdottir / Listening to the Family’s Voice 355

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period to predict parents’ perception of their child’s health at 12 months. Quality of life among family members is another construct that has received little attention when families are dealing with chronic illness. Interestingly, however, Dalheim-Englund, Rydström, Rasmussen, Möller, and Sandman (2004) found a significant association between low outcome of quality of life among mothers and the severity of asthma in their child. For parents of children with asthma, sense of coherence, depression, anxiety, and positive well-being have nevertheless been found to predict family hardiness (Svavarsdottir & Rayens, 2005); and Svavarsdottir, Rayens and McCubbin (2005) found both sense of coherence and family hardiness to predict family adaptation. Additionally, mothers’ perception of their family’s adaptation, when families had a child younger than 6 years of age with asthma, was found to significantly predict the healthy sibling’s behavior in the family (Erlendsdottir & Svavarsdottir, 2004). For families of children with asthma, the illness has been found to affect the family’s daily activities (Jokinen, 2004). Furthermore, for adolescents with a chronic disease, support from nurses, physicians, parents, and friends—in addition to motivation, energy, and will power—have all been found to be significant factors in predicting compliance (Kyngas & Rissanen, 2001).

Surprisingly, there was only one family-level nursing intervention study found in the literature conducted within the past 5 years. In that particular inter- vention study, an intervention was developed and tested among nurses and families of children and adolescents with cancer (Svavarsdottir & Sigurdardottir, 2005). All the nurses participating in the study thought the intervention fitted within the health care service offered; and for the families, a significant dif- ference was found on both mothers’ and fathers’ well-being after the inter- vention compared to before the intervention. However, family relations have been studied to some degree, where, for example, changes in internal and external family relations and the upbringing of a child who is psychiatrically disturbed, have been found to be significantly correlated with parental coping (Puotiniemi, Kyngas, & Nikkonen, 2001).

Both the parents’ and the nurses’ perceptions of what aspects of care and assistance are important for parents of children up to 18 years of age with can- cer have recently been described in the Nordic literature (von Essen, Enskar, & Skolin, 2001). The findings indicated that accessible care, clinical competence, continuity, emotional support, information, participation in care, participation in decision making, physical ambience, shift in parenting roles, social compe- tence, and temporary assistance and that the child is well cared for were impor- tant. In the study, good care for parents of children with cancer was defined as the meeting of nice, polite and helpful staff that provided information and the

Svavarsdottir / Listening to the Family’s Voice 357

parents knowing that their own child was well cared for. Similarly, for siblings, von Essen and Enskar (2003) identified what aspects of care and assistance were important for siblings of children younger than 18 years with cancer and found that amusement, emotional support, family life information, normal life participation, social competence, and time were important.

Changes in family health associated with child’s chronic illness and hos- pitalization have been identified by Hopia, Paavilainen, and A

. stedt-Kurki

(2005) where family health has been found to be formed out of two different dimensions: (a) the constituent systems and (b) the resources of family health. The constituent systems describe the impact of the child’s chronic ill- ness and periods of hospitalization at the level of both individual family members and the family as a whole. The resources were divided into active involvement, coping, change of values, and social network. Furthermore, Hopia and her colleagues (Hopia, Tomlinson, Paavilainen, & A

. stedt-Kurki,

2005) described the action of nursing staff in promoting family health during a child’s hospital stay (when the child had a chronic illness) through five domains: (a) reinforcing parenthood, (b) looking after the child’s welfare, (c) sharing the emotional burden (d) support for everyday coping, and (e) creat- ing a confidential care relationship. In addition, Hopia, Paavilainen, and A . stedt-Kurki (2004) found nurses to use a systematic, selective, or situation-

specific strategy for promoting family health during a child’s hospitalization when families were dealing with a chronic illness in a child where the sys- tematic way of working with families seemed to be useful. In the systematic family nursing, the focus was on promoting the health of the whole family, drawing on its individual situation.

Discussion

The findings from the integrative review on families caring for a child or an adolescent with chronic illness add to our understanding of which vari- ables and phenomena contribute to family members’ well-being, quality of life, adaptation, and/or family health. Furthermore, results of this concept analysis indicate the importance of involving families in the science and prac- tice of nursing. A reasonable number of empirical and theoretical research in nursing has been carried out during the past 5 years within the Nordic countries on families of children and adolescents with chronic illness. Nevertheless, the majority of this work has been conducted within a rather limited scope of chronic illnesses (9 studies on families of children with asthma and 13 studies on families of children with cancer), the families’ background is in many cases similar (e.g., dual parent families, heterosexual

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families), generally there were few quantitative studies that used a family conceptual framework or model to guide the research (only 9 studies used a family conceptual framework), and the research design of the studies is more descriptive, longitudinal, and lived experience than experimental design or intervention research.

Family-centered nursing care is another area of interest that emerged from this analysis as families’ internal and external relationships or collaborations were the center in some of the studies analyzed. Chesla (2005) emphasizes the importance for clinicians and researchers to enter the life world of the individ- ual and his or her family living with chronic illness by considering simple and clinically relevant ways when collaborating with families. With that in mind, Chesla underlines the importance of inviting families to narrate about their everyday life as that provides families the chance to reflect on, as well as to nar- rate, a direct experience from the everyday. Narrative questions invite discussion of concrete historical and memorable events. In electing narratives of the every- day, nurses need to serve as empathic listeners. By telling stories, the families are representing themselves to themselves and to the listener. Furthermore, Chesla points out that the quality of openness of the listener and the relationship of the listener to the teller is created and concreted in the narrative context. In this way, narratives allow those who live in difficult, disorganized, and some- times overwhelming situations to find order in their situation and may pro- vide the family with a chance to reflect, to seek coherence, or new realization in the telling. According to Chesla, holistic approach to families’ experience of chronic illness will include both narratives and reflexive questions.

Similarly, Wright and Leahey (2005) call attention to the importance of knowing what nursing interventions make a difference for families. Robinson and Wright (1995) found useful interventions to fall within the therapeutic change process such as bringing the family together to engage in new and different conversations, establishing a therapeutic relationship between the nurse and family, particularly in the areas of providing comfort and demonstrating trust. In the stage of moving beyond and overcoming problems, families identified four interventions that promoted healing; those were inviting meaningful conversation, noticing and distinguishing family and individual strengths and resources, paying careful attention to and exploring concerns, and putting illness problems in their place. Wright and Leahey also point out that it is not the length of the conversation that makes greatest difference; rather, it is the opportunity for family members to be acknowledged and affirmed that has a tremendous healing potential.

Results from this concept analysis indicate the process by which the family’s daily activities (e.g., treatment distress, family strains, illness severity,

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and caregiving activities) lead to quality of life, well-being, and parents’ per- ception of child’s health. The findings also indicate that illness severity has an impact on daily activities; and caregiving activities had an impact on parents’ perception of child’s health.

In the analysis, both internal and external relationships or collaborations were found to influence coping; parents’ quality of life and well-being influenced the parents’ sense of coherence and family hardiness and the parents’ view of child’s health. In addition, the family’s internal relations were found to influence quality of life and well-being; and the external rela- tionships or collaborations were found to influence quality of life and well- being and adolescents’ compliance. Additionally, the sense of coherence and family hardiness were found to influence family adaptation. Findings from the analysis also showed that adaptation had an impact on the healthy sibling’s behavior and that energy, willpower, and motivation were found to have an influence on adolescents’ compliance. Finally, in the family-level intervention, where the focus was on offering parents an educational and emotional support, the intervention was found to increase mothers’ and fathers’ well-being after the intervention.

The new knowledge that develops out of this concept analysis is mean- ingful in that it can give us nurses information regarding where we might want to focus our attention when creating, developing, and testing long-term or short-term tailored family level interventions for families and in that way offer them our best and most up-to-date evidence based health care service available.

There is a need for further research and theoretical development for families of children and adolescents with chronic illnesses. Especially, there is a need for intervention research, both within hospitals and community set- tings, where new and creative interventions (emphasizing both the role of the nurse as well as the response of family members) are developed and tested. Understanding the factors that contribute to family health when families are dealing with a chronic illness among one of its members might foster the design of multisided interventions (even internationally) involving a variety of families handling multiple chronic illnesses. Being aware of which nurs- ing interventions are the most beneficial to families who are dealing on a daily basis with chronic health condition, is important to offer families high quality and evidence based health care services. Furthermore, knowing what factors contribute to family health, when families are dealing with chronic ill- nesses, has the potential to improve the specificity of nursing interventions. We need to create and test specific family nursing interventions to improve our health care services to families.

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Now I would like to share with you a family nursing intervention that was created and tested at the Faculty of Nursing of the University of Iceland for families of children newly diagnosed with cancer (within 2 to 3 months). The intervention is based on the Calgary Family Nursing Intervention Model (Wright & Leahey, 2000), the Illness Beliefs Model (Wright et al., 1996), findings from earlier longitudinal research on family adaptation for Icelandic families of children and adolescents with cancer (Svavarsdottir, 2005b; Svavarsdottir, 2005a), and the review of the literature on parents’ coping, well-being, and adaptation when families are dealing with childhood cancer.

Family Level Intervention for Parents of Children and Adolescents With Cancer

The intervention consists of three phases:

A. A 137-page educational and informational home page was developed, focusing on for example individual’s, siblings’, and parents’ experiences of dealing with childhood cancer and on practical issues regarding cancer such as treatments, management, and future concerns regarding medical side effects. Parents could look up the information, at their own conve- nience, about various types of cancer and its effects on the child and fam- ily members. The home page was open during the time period of the study and new information was added on to the home page on a weekly basis for the first 10 weeks of the study.

B. Support was offered to the parents via the internet, where the parents could either interact with each other about their concerns without partic- ipation of the research team, or the parents could interact with the research team both on an individual basis or with the research team hav- ing other parents follow and participate in the discussion.

C. Each family was offered one or two 60- to 90-minute support interview(s), depending on the need for support as indicated by the parents. The sup- port interview was introduced to the parents as an opportunity for them to engage in a therapeutic relationship. A nurse researcher with a doc- toral degree in family nursing and a clinical nurse specialist in pediatric cancer nursing conducted the interviews.

The support interview(s) had four main focuses: (a) to invite the parents to engage in a therapeutic relationship; (b) to inform parents about evidence based research findings in new research related to coping, well-being, resiliency, and adaptation for families dealing with childhood cancer; (c) to give the parents opportunity to discuss issues that were of concern to them

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and to answer specific questions that were on the parents’ mind related to the health situation of their child; and (d) to facilitate a context where the family could make small or significant changes. This was brought about by having the interventionist invite the families to think differently, encourage different affective expressions and by asking families to perform new tasks. To make the interview supportive for the families, the interventionist needed to ask interventive questions, empower family members, and express confidence in their problem solving abilities.

Results from this intervention study indicated for both mothers and fathers that their level of well-being increased significantly after the intervention and the fathers found it more helpful to maintain social support and psychologi- cal stability after the intervention compared to before the intervention. Furthermore, the Web site was visited 332 times during the period of the study, about 12 times per month. When the parents were asked after the intervention to evaluate the support interview(s), 8 families (14 parents) responded in writing to an open-ended question regarding their experience of receiving support interview(s). All of the parents were thankful for being offered support interview(s) and thought the interview(s) was or were helpful to them. One mother described her experience of the support interview(s) as

very helpful and supportive. We were so insecure; the interviews gave me and my family hope about the future and increased our strengths to keep up with our daily life. We are more hopeful now that we will handle our experiences. It was good to have such caring and understanding atmosphere, and to receive the interest from health care professionals.

A father described his experience as “supportive and helpful. It opened my eyes to what we were going through. I was under such pressure at the time; I needed this.”

Finally, I would like to share with you a case example from one family who participated in a longitudinal study that took place during 18 months, at the Faculty of Nursing of the University of Iceland.

Case Example

John is a 10-year-old Icelandic boy who was diagnosed with Burkitt lymphoma a little more than 2 years ago. John’s father, age 56, was a farmer who had lived alone after a divorce when he meet John’s mother. John’s mother, age 39, had also been divorced for a while when she met John’s father. The couple, had been cohabiting for 2 years when John was born.

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The family lived together on the farm for about 8 years where John was raised up with his two half-siblings.

John’s parents did not have an easy marriage those years at the farm. His father was diagnosed with manic-depressive disorder that went untreated for a long time; the family lost their home because of a fire and shortly after rebuilding their house there were earthquakes in the area and their new home was permanently damaged. John’s parents’ marital problems esca- lated after the earthquake. The family moved to one of the little villages close to the farm and John’s mother was getting ready to leave her husband when John was diagnosed with cancer.

According to both of John’s parents, out of everything they had experi- enced, John’s cancer diagnosis was their worst life experience. John’s parents coped differently with the diagnosis. His father thought his son would die of the disease; he became distant and isolated himself by going frequently back to the farm taking care of the sheep. John’s mother, on the other hand, coped by caring even more and for a longer period of time for John and by follow- ing him carefully through all the treatments. In the beginning, John’s mother was angry at his father for isolating himself from his son’s cancer treatment but later she realized that this was his way of dealing with the situation. John’s mother also started to go out jogging shortly after John’s diagnosis, she wanted to spend some time by herself thinking about and working on the issues her family was going through. Both of John’s parents claimed that they had, during the past 2 years, become closer to each other and that they would stick together because of John’s cancer. John needed them both and they wanted to help him together in every way they could to overcome the disease.

John’s parents described their son as a sensitive and a good kid. He had spent a lot of time with both of them on the farm, enjoyed being around them and playing with his friends. Although he was big for his age, John’s parents thought he was in a good physical shape 2 years ago. However, after the can- cer diagnosis, John started slowly to put on weight. To begin with, he lost a little weight because of the treatment but he was quick to regain it. Now, 2 years after the diagnosis, John is, according to his parents, considered to be cured of cancer; he only needs to visit his doctor on a regular basis for a check- up. However, John was still gaining weight and today, he is 5.15 feet high and weighs 203 pounds. John has gained close to 88 pounds during 2 years.

Six months ago, John started on a diet program with regular check-ups on his weight but he is still gaining weight (has gained 20 pounds during the past 6 months). John’s obesity has lowered his self-esteem, he believes he is worthless, he does not want anyone to see him like this, and he has withdrawn from his friends because they are often teasing him. John’s obesity also leads

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him to be a target for mobbing at school. Some of his classmates consistently tease him, by calling him names and humiliating him. His mother is deeply hurt because of her son’s experience. Sometimes she is angry toward the teachers and the school, but at the same time, she is vulnerable and feels help- less against the whole situation. John’s father is angry toward the administra- tion at the school: “They should be able to handle a situation such as this one” he claimed. He has often talked to them, but things have not changed.

John’s parents desperately want to help their son but they are not sure how. They love him dearly and John’s mother has given him all her love that she hopes will help him through this difficult time. But, how can John’s family handle their situation? Do they need further professional help regarding how to take care of John’s obesity and mobbing to improve his health and well- being after the cancer treatment? How does John’s health situation affect his mother’s and father’s well-being, their quality of life and their family health in general? These questions might be among the issues nurses—within the school system, the community health care system, and the Oncology Pediatric Unit at the Landspitali–University Hospital—have been wondering about in relation to the enhancement of the health of John’s family. There is no question in my mind, that nurses, as highly skilled health care profession- als, need to be able to collaborate to a greater extent with families in our society, to help families to handle often times a very complex health care sit- uation by specifically offering precise interventions that are of benefit and advantage to families.

Conclusion

In this presentation, I have focused on giving an insight into where we are at in our contribution to family centered care in the Nordic countries and laid an emphasis on the need for further knowledge development within our profession by focusing on specific family-centered interventions. The results from the integrative review are helpful as they give an indication of what factors contribute to family health when families are dealing with chronic illnesses. These factors can be used in future research to improve and specify nursing interventions within our communities. Nurses now have the possibility to take the lead in involving families in a systematical way in their care, and we as health care professionals may not let that opportunity go by. There is evidence in our scientific work that families need and want health care services offered by nurses. Our ethical responsi- bility is therefore to find out, within our research and clinical institutions,

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what these health care services should be all about and how we should go about living it out within our socialized health care system.

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Erla Kolbrun Svavarsdottir, RN, PhD, is a professor, the academic chair of family nursing, and the dean at the University of Iceland, Faculty of Nursing. During the past decade, she has collaborated on national and international research on families of children with asthma. More recently she has also collaborated with Icelandic researchers on intervention research projects regarding families of children and adolescents with cancer and on families of adolescents with diabetes. Her current research focuses on quality of life of healthy and chronically ill Icelandic

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children and their families. She is also leading a research project about family violence. Recent publications include “Comparison of Health Related Quality of Life among 10-12 year old Children with Chronic Illness and Healthy Children: The Parents’ Perspective” in Journal of School Nursing (2006, with B. Orlygsdottir); “The Feasibility of Offering a Family Level Intervention to Parents of Children with Cancer” in Scandinavian Journal of Caring Sciences (2005, with A. O. Sigurdardottir); “ Predictors of Adaptation in Icelandic and American Families of Young Children with Chronic Asthma” in Family and Community Health (2005, with M. K., Rayens & M. McCubbin); “Hardiness in Families of Young Children with Asthma” in Journal of Advanced Nursing (2005, with M. K. Rayens); “Gender and Emotions: Icelandic Parents Experiencing Childhood Cancer” in International Journal of Nursing Studies (2005).

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