European Journal of Oncology Nursing 18 (2014) 273e280

Contents lists available at ScienceDirect

European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

Children’s participation in shared decision-making: Children, adolescents, parents and healthcare professionals’ perspectives and experiences Imelda Coyne a, *, Aislinn Amory a, Gemma Kiernan b, Faith Gibson c a b c

School of Nursing and Midwifery, Trinity College Dublin, 24 D’Olier Street, Dublin 2, Ireland School of Nursing, Dublin City University, Glasnevin, Dublin 9, Ireland Faculty of Health and Social Care, Department of Children’s Nursing, London South Bank University, 103 Borough Road, London SE1 OAA, UK

a b s t r a c t Keywords: Children Parent Healthcare professionals Cancer Shared decision-making Interactions Information Participation Qualitative

Purpose of the research: Despite decision-making featuring throughout the trajectory of cancer care, children’s participation in decision-making remains an area much under-researched and complicated by conflicting opinions. This study explored children’s participation in shared decision-making (SDM) from multiple perspectives from one haematology/oncology unit in Ireland. Methods and sample: Qualitative research design was used to explore participants’ experiences of children’s decision-making. Interviews were conducted with children1 aged 7e16 years (n ¼ 20), their parents (n ¼ 22) and healthcare professionals (n ¼ 40). Data were managed with the aid of NVivo (version 8). Key results: Parents and children’s roles in decision-making were significantly influenced by the seriousness of the illness. Cancer is a life-threatening illness and so the treatment ‘had to be done’. Children were not involved in major decisions (treatment decisions) as refusal was not an option. They were generally involved in minor decisions (choices about care delivery) with the purpose of gaining their cooperation, making treatment more palatable, giving back a sense of control and building trusting relationships. These choices were termed ‘small’ decisions that would not compromise the child’s welfare. Some adolescents were aware that choices were not ‘real’ decisions since they were not allowed to refuse and expressed feelings of frustration. Conclusions: Healthcare professionals and parents controlled the process of SDM and the children’s accounts revealed that they held a minimal role. Children appeared content that adults held responsibility for the major treatment decisions. However, they desired and valued receiving information, voicing their preferences and choosing how treatments were administered to them. Ó 2014 Elsevier Ltd. All rights reserved.

Introduction Childhood cancer is relatively rare. The incidence rate for Ireland is approximately 112 cases per year (Stack et al., 2007). Cancer continues to be described as a life-threatening illness, one that causes considerable emotional and physical distress for children and their families (Hedstrom et al., 2003; Woodgate and Degner, 2002). Increasingly however, children are surviving cancer due to medical advances and better treatment protocols (Gatta et al.,

* Corresponding author. Tel.: þ353 18962692; fax: þ353 18963001. E-mail addresses: [email protected] (I. Coyne), [email protected] (A. Amory), [email protected] (G. Kiernan), [email protected] (F. Gibson). 1 The term ‘children’ is used to denote both children and adolescents and to avoid cumbersome repetition. 1462-3889/$ e see front matter Ó 2014 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2014.01.006

2003). Whatever the treatment protocol children usually undergo lengthy aggressive treatments that can include chemotherapy, radiation, surgery and possibly bone marrow transplants along with numerous medical examinations and procedures (Woodgate and Degner, 2003). Thus there are many aspects of cancer which make life difficult and ensure that life can never be ‘normal’ for the family of a child with a life-threatening illness (McCaffrey, 2006). All of these stressors and the unpredictable nature of cancer mean that children’s cancer care is characterised by challenging decisionmaking (Whitney et al., 2006). Both parents and children usually face multiple issues that require decisions along the cancer journey to either recovery and survivorship or end of life care. Current recommendations state that children should be supported and encouraged to participate in healthcare decisions (Spinetta et al., 2003). Studies tell us that children with cancer

274

I. Coyne et al. / European Journal of Oncology Nursing 18 (2014) 273e280

benefit from being involved in decision-making, and that this influences their general wellbeing (Spinetta et al., 2002). Having a voice in decisions enables children to develop a sense of themselves, instils confidence, enhances communication skills, improves the effectiveness of services and encourages their participation in our wider society as active health consumers (Cohen and Emanuel, 1998). Therefore, key documents emphasise the importance of children’s participation in shared decision-making (SDM) at a level commensurate with their experience, age, and abilities (Boylan, 2004; Cavet and Sloper, 2005). Shared decision-making is defined as the ways in which children can contribute to the decisionmaking process, independent of who makes the final decision. Although there is strong support from policy makers for children’s SDM, the evidence on children’s participation in SDM is weak as this area of research is young and under-developed. There is evidence to suggest that children should be involved in decisions that affect them when they are able to do so and that children would like to be active participants in their health care, or at least have the choice to participate (Hinds et al., 2001; Zwaanswijk et al., 2007). However, research with hospitalised children indicates that they can often encounter obstacles to participating in SDM (e.g. Coyne et al., 2006; Runeson et al., 2002). Lack of involvement can lead to increased fears and anxiety, feeling unprepared for procedures and reduced self-esteem (Coyne, 2006). Despite the apparent benefits of children’s involvement, doubts exist about the appropriateness of sharing illness related information and decisions with children (Young et al., 2003). Children’s participation in SDM is complex because of issues such as: adults’ concerns about children’s competence to participate, a desire to protect children from distressing information and the burden of decision-making and the child’s position in the three way relationship. Parents instinctively try to protect their children from information which may worry or upset their sick child (Zwaanswijk et al., 2007). As a result, children are not always acknowledged as active participants in decisions regarding their medical treatment (Tates et al., 2002b). However some children may wish to take a passive role and may prefer their parents and/or health professionals to make the decisions depending on the situation. Balancing children’s right to participate in SDM and their need and right for protection can be at its most extreme in a healthcare situation. Although children’s preferences for involvement in SDM may vary, it is important that children’s rights to participation are supported and respected by adults. There is growing agreement that children’s participation in SDM is a difficult area comprising several ideas that may be taken to mean different things in healthcare. It remains an area underresearched and complicated by conflicting opinions (Gabe et al., 2004; Young et al., 2006). There is a great deal of research on parents’ role as proxy decision-makers for children as opposed to obtaining the child’s own views and experiences (Dixon-Woods et al., 2002; Hinds et al., 2000). There is a growing body of studies into children’s participation in end-of-life and clinical research decisions (Hinds et al., 2005; Joffe et al., 2006; Snethen et al., 2006) but remarkably few studies into children’s participation in cancer treatment decision-making. Treatment decisions include both medical (e.g. cancer therapy) and nursing procedures (e.g. catheter insertions, IV infusions, lumbar punctures, bone marrow aspirations, biopsies, scans, and venepunctures). There is a lack of information on how parents, children and health professionals work together in relation to the SDM process. It is unclear to what extent children’s participation is supported and promoted in practice and the influence of parents and healthcare professionals. Hence this study sought to:

1. Explore with children with cancer, their parents, and healthcare professionals’ experiences of children’s participation in SDM. 2. Describe the levels of children’s participation in the SDM process from the perspectives of all participants. 3. Identify confounding and facilitating factors that influence children’s participation in SDM.

Methods Sample and study design A qualitative design was used to obtain participants’ experiences from their own perspective (Speziale and Carpenter, 2007). The study was conducted in a paediatric haematology-oncology inpatient unit and day care unit in a children’s hospital in Ireland. The inpatient unit had 19 beds and the day unit had 13 beds. There was a policy of family centred care in place, but no policy on information-sharing nor participation in decision-making. Parents and children were invited to participate if they met the following inclusion criteria: child receiving cancer treatment more than 6 weeks since diagnosis, aged 7 years upwards and not receiving palliative care. Members of the multidisciplinary team were purposefully sampled to obtain a rich and diverse sample of healthcare professionals. Data collection Data were collected through audio-recorded individual interviews that were structured around six topic areas (Box 1). The open-ended interviewing technique was used to allow flexibility with the questions, and to follow participants’ own story. Interviews took place during the child’s hospitalisation to facilitate easy recall of concrete events. Each participant chose the time and place of the interviews, thereby minimising any interference with medical or nursing care. Interview durations varied from approximately 30e60 min and were conducted in quiet, private areas. Participatory techniques were incorporated to aid interviews with children. They were a jelly bean game and decision and people cards representing a child, parent and staff. In response to some questions, children could place jellybeans into four jars labelled ‘none’, ‘a little’, ‘some,’ and ‘a lot’ according to their response. Visual depictions of decisions were used to explore what type of decisions children were involved in and their preferences around who should make what decisions. Ethical considerations Ethical approval was granted by both the University Faculty Ethics Committee and the Hospital Ethics Committee. In general, interviews with parents and children were conducted seven or more days after they had consented so that they had adequate time to reflect on their decision to participate. The average number of days between first contact with a family who agreed to take part and data collection was 14 days. Cancer is a life threatening serious disease and children often have to undergo protocols with distressing side effects (e.g. pain, fatigue, nausea, vomiting), therefore the children were approached with great care and sensitivity (McIlfatrick et al., 2006). Consent was seen as an on-going process throughout and children were provided with a ‘red card’, which they could use to stop the interview at anytime. Interviews were held when the child was ready and at a time which did not conflict with planned treatment schedules. Children were generally interviewed alone but some parents chose to be present and this was in accord with their child’s wishes.

I. Coyne et al. / European Journal of Oncology Nursing 18 (2014) 273e280 Table 1 Children’s demographics.

Box 1 Interview topics.       

How children are involved in information-sharing How children are involved in decisions at home How children are involved in decisions in hospital Process of decision-making Participants’ preferences in decision-making Participants views of children’s rights and abilities Demographic information

Data analysis

Gender Age (7e16 years)

Diagnosis

Average length of stay

Data were analysed inductively and managed using a computerised qualitative data analysis programme QSR NVivo 8. Interviews were audio-recorded and transcribed verbatim. The analysis process included open coding, memo-writing, category development, and constant comparison of data, which are elements closely aligned with a grounded theory approach (Charmaz, 2006). Analysis began with open coding, which is line-by-line systematic coding based on content. Free codes were organised into categories and then integrated into major themes. The summary of the themes was tested across the datasets using queries and the NVivo matrix function. Summary statements were synthesised and an explanation generated. Consistency was enhanced by repeatedly referring back to original transcripts throughout data analysis. In addition a second independent rater evaluated the coding, categories and their application to the data at the beginning and throughout the stages of data analysis. Once the final list of categories were derived these were independently examined by two members of the research team (IC & AA) to check for congruency. Sample demographics Twenty children were recruited. The 20 children (11 males and 9 females) had been undergoing treatment for less than 1 year. Nine were aged 7e11 years and 11 aged 12e16 years (m ¼ 12 years). The types of cancer were: leukaemia (n ¼ 6); cancers of central nervous system (n ¼ 4); cancer of the kidney (n ¼ 1); sarcomas (n ¼ 5); lymphomas (n ¼ 4). The 22 parents of these children were aged between 37 and 52 years, 5 fathers and 17 mothers, and two couples. The 40 healthcare professionals included: nurses (n ¼ 20), doctors (n ¼ 16), professions allied to medicine (n ¼ 4). The characteristics of participants are outlined in Tables 1e3 below.

Length of time from diagnosis to interview No. of hospitalisations

Recruited from

 Best interest of the child  Lacking involvement in treatment decisions  Allowed choices but not the decision to refuse treatments  Assessing children’s ability for participation in SDM  Lacking any ‘real’ decisions

Percentage 55% 45% 35% 25% 40% 30% 20%

1 5 4 3 14 3 8 9 4 8 9 4 12 8

5% 25% 20% 15% 70% 15% 40% 45% 20% 40% 45% 20% 60% 40%

“It has to be done” e best interest of the child Most participants viewed decisions as consisting of major medical decisions or minor decisions. Major medical decisions included investigations, decision to treat, administration of cancer therapies, selecting a treatment protocol, and delivery of medical and nursing procedures. Minor decisions were decisions about how care/procedures would be delivered. Major decisions were made mostly by the healthcare professionals (HP) and discussed with parents. From HPs perspectives, treatment was in the ‘best interest of the child’ and therefore there was ‘no real’ decision to be made

Table 2 Parents’ demographics.

Country of origin

Number of children

Box 2 Themes and categories.

Number 11 9 7 5 8 6 4

followed by an acronym that are as follows: C-Child; M-Mother; FFather; HP-Healthcare professional.

Age (37e52 years)

Results will be discussed in terms of the core theme ‘it has to be done’ and the categories, which influenced participants’ roles in the SDM process (see Box 2). Participants’ quotes are displayed in italics

Male Female 7e9 years 10e12 years 13e16 years Leukaemia Cancers of central nervous system Cancer of the kidney Sarcomas Lymphomas 1e2 days 3e6 days 7e21 days 1e3 months 4e8 months 9e12 months 1e5 times 6e10 times 10e17 times Main ward Day unit

All children were born in Ireland apart from one born in the USA.

Gender

Results

“It has to be done”

275

Occupation

Level of Education

Number

Percentage

Male Female 37e41 years 42e47 years 48e52 years Ireland England US One Two Three Four Five Stay at home parent Tradesperson Self-employed Manager/Director Professional Administrator

5 17 4 12 6 18 3 1 1 9 7 4 1 14 2 1 1 3 1

Primary Second level Third level Postgraduate

1 6 11 3

23% 74% 17% 52% 28% 78% 17% 4% 4% 41% 30% 17% 4% 64% 9% 4% 4% 13% 4% 0% 4% 27% 50% 14%

276

I. Coyne et al. / European Journal of Oncology Nursing 18 (2014) 273e280

Table 3 Healthcare professionals demographics.

Gender Age (26e61 years)

Position

Grade

Country of origin

Number of children

Length of Experience/time since qualifying (2e38 years) Length of Experience in cancer care (2 months-30 years) Length of experience working with children (6 months-37 years)

Male Female 26e38 years 39e50 years 51e61 years Nurse Doctor Social worker Play specialist Dietician Staff nurse Clinical nurse specialist Clinical nurse manager Assistant director of nursing Senior house officer Registrar Specialist registrar Consultant Social worker Senior social worker Play specialist Senior dietician Ireland Northern Ireland England Trinidad and Tobago South Africa India Philippines Pakistan Nigeria None One Two Three Four 2e13 years 14e25 years 26e38 years 2-months-5 years 6e15 years 15e30 years 6 months-10 years 11e25 years 26e37 years

Number

Percentage

7 33 29 9 2 20 16 2 1 1 7 2 10 1

18% 83% 73% 23% 5% 50% 40% 5% 3% 3% 18% 5% 25% 3%

7 2 2 5 1 1 1 1 28 1 2 1 1 3 2 1 1 25 4 4 6 1 23 16 1 16 19 5 22 17 1

18% 5% 5% 13% 3% 3% 3% 3% 70% 3% 5% 3% 3% 8% 5% 3% 3% 63% 10% 10% 15% 3% 58% 40% 3% 40% 48% 13% 55% 43% 3%

and were happy to be guided. As one parent stated, “I suppose I would have confidence in the health professionals and I mean I don’t have a medical background so if they were to tell me, ‘Well I think this is best for Paddy,’ you know I’ve enough faith in them that they are pursuing what is best for Paddy” (M10 of a 7 year-old boy). Adults were in agreement that children could not be involved in major decisions as cancer was a life-threatening illness, treatment was essential and refusal was not an option. Children were seen as having a right to be involved but not necessarily possessing the emotional maturity to make serious (major) decisions. As one HP said, “I still think children should involved, it’s better for them to be involved, but I think the major kind of decisions should be with the parents, taking into account what they have to say” (HP19) and “In their day to day care, I’d say yeah as in like the medicines and things like that but like major stuff as in, you know if they have their chemo on time and things like that, the children wouldn’t have a decision, no” (HP 22). Similarly children were aware that they had to undergo therapy because of the seriousness of the illness and understood that they had no choice. They seemed to accept that adults took cancer therapy decisions. Children trusted the adults as they noted that their parents had their welfare at heart and professionals were the experts (e.g. possessing special medical knowledge and expertise). As one girl explained, “You know like the treatment and all that you leave to them. You take it for granted because they know what they’re doing. You don’t have a clue” and “Everything else you’re told like, ‘If you don’t do this you will get sicker.’ So you have to do this” (C6, aged 16). Younger children did not want the responsibility for major decision-making. As one boy explained “Well I usually don’t like making big decisions because I don’t really feel like it’s my place.like our usual decision would be like just what I want to do for the day, so I’d make that decision. I’m most comfortable the way I am now, like how involved I am now. I think I’m in the best situation” (C10, aged 11). Adolescents2 (aged 12e16) stated that they were happy for the major decisions to be taken by adults, but they preferred to be included in the information sharing and the decision-making process. As one girl explained, “It’s not like the parents are getting it, it’s you. So you should be able to have a say in it” (C15, aged 14), and a boy said, “I know all the decisions that are made and I like to be included in them” (C5, aged 12).

“It has to be done” e lacking involvement in treatment decisions by parents or children .As one HP said: “They’re faced with their child having a potentially life threatening illness, and then the decision is to treat or not to treat and of course they’re going to treat, because they want their child to live . So that decision is out of their hands; it’s what they have to do” (HP 10) and “It’s not going to be pleasant sometimes but it just has to be done, if it’s in the best interest of the child (HP29). Non-adherence was not an option for either parents or children as cancer was seen as a life threatening illness. As one HP explained, “I mean they want to be cured of a disease, if we let children decide that they didn’t want to have chemo, you know, they wouldn’t survive” (HP 19). Most parents seemed aware that they did not have a choice about the cancer therapy because the treatment was necessary for their child’s survival. As one parent said, “If we disagree it’s our child’s life is at risk so you have to agree with it really, what’s going on. You have to accept it and just keep going” (M4 of a 12 year-old boy). Another parent said, “I don’t think any of us are involved in the decision-making. We signed the forms. We prefer to make them ourselves of course but they’re the professionals” (M2 of a 7 year-old boy). Parents viewed the HP as being the experts, possessing unique knowledge and experience in cancer therapy so they trusted them

To ensure that treatment effectiveness was maximised, adults noted that they had to deliver care according to a strict treatment protocol. Children could not be involved in treatment protocol decisions because it was well defined and essential for survival. As one HP explained, “If it has to be done we wouldn’t even ask them. We would have said to them up front, this has to be done” (HP 31). Sometimes families tried to challenge treatment decisions, but this could not be allowed since varying a protocol would have adverse health outcomes for the child. One HP said, “They (parent and child) might not like it, they don’t like it but it has to be done and this is the problem” (HP 1). Likewise, both parents and children were aware of the strict protocol and felt that there were no decisions to be made, “You see with cancer care really it’s so fixed, you can’t really make decisions about what treatments, what medicines you take and what you don’t, you know that’s very, very fixed” (M10 of 7 year old boy). Parents felt that children must comply with the chemotherapy, investigations, medications and procedures. One father explained, “You’ve got to take the guilt of trying to make them decisions away

2

Adolescents refer to children in the age bracket of 12e16 years in this study.

I. Coyne et al. / European Journal of Oncology Nursing 18 (2014) 273e280

from him because No, you have to do this end of story. You have to take this medicine if you want to get better” (F3 of a 7 year-old boy). Some children noted that although they felt that health professionals listened to them, their opinion would not alter the course of prescribed treatment. At the end of the day, they had to comply and the phrase ‘I just have to do it’ was repeated consistently in their interviews. As one boy said, “No my opinion doesn’t really matter ‘cause I have to go by their saying. Like I’ve to go with what’s on the protocol. Like they gave me this book at the start that tells us what’s going to happen after this treatment and I just have to do it” (C1 aged 14). Most children accepted that doctors held the medical expertise and therefore they had to comply. One girl said, “Like the doctors and the consultants, like they know their stuff so.there’s no point in me fighting because they’re very smart” (C9, aged 14). “It has to be done” e allowed choices but not the decision to refuse treatments All HPs and parents noted that children’s role in decisionmaking was very limited, thus it was important to offer choices, provided the decisions did not compromise health outcomes or disrupt treatment protocols. These were termed minor or small ‘everyday’ decisions usually associated with timing and delivery of procedures (e.g. medication, blood tests, dressings, nutrition). One HP explained “They’re small decisions about general basic stuff, obviously not major medical decisions, it just gives them a little bit of control and let’s them feel a little bit like more involved, helps them cope better” (HP 22) and “it effects how they cope, react, respond to their treatment in every sense of the word” (HP 34). Decisions had to be safe and parental approval was also necessary. One HP said, “If you have the cooperation of the parents, then it’s easier to involve the child in the decision-making. That’s the first thing” (HP14). As this mother explained, “Absolutely, if the outcome of their choice doesn’t in any way negatively affect their chances of a favourable outcome” (M10 of a 7 year-old boy). It appeared that when parents supported their children’s efforts to participate, they were more likely to be allowed to take part in the small decisions. Nurses and parents held a major role in offering choices around procedures rather than doctors or other members of the team. A nurse explained, “I suppose they (doctors) don’t spend as much time persuading the children. They’d kind of come in and make a decision and say, “X, Y and Z is going to happen.” But we’re left with the parents to carry it out. The bulk of the decision-making and the negotiation would be with ourselves” (N1). Cancer therapy was arduous involving painful and unpleasant procedures, thus choices were useful means of making treatments more palatable and of gaining cooperation. One nurse said, “If they feel that they have a choice in the matter, if they can have a choice to take the medicine on a spoon rather than a syringe. Just little things like that to give them control over the situation, makes it easier for them” (HP 18). Likewise a mother said, “I feel there’s so much happening to her with her illness that you’ve no control over that. I think it’s only fair where it’s possible to give her a say in things and let her feel that she can decide things because so much has happened that she hadn’t been able to decide” (M17 of a 7 year-old). Involvement in small decisions (having choices) was seen as giving children, particularly adolescents, back some degree of independence, autonomy and control over the situation. Adolescents experience frustration over the loss of control and so negotiation was essential. Some HPs, however, believed that giving choices was not always helpful as it gave the impression that children had the option to refuse which they did not have. For example, “Every time, you’re communicating with them and gaining cooperation from them, and allowing them to make those decisions. But they have to decide to go with you and to do what you need to do, so you could question how

277

much of it really is decision-making and how much you’re telling them, this is what they have to do” (HP 10). However, others believed that it was essential that children were allowed choices as this helped to build trusting relationships and make the process easier for all concerned. As one nurse explained, “If we don’t have the kid on our side, treatment it is a lot tougher, their own procedures are a lot tougher, they don’t sail through their daily activities with us on the ward” (HP 11) and “if they’re not cooperating it upsets the parents, makes our work twice as hard” (HP33). Parents also viewed involvement in small decisions as leading to increased cooperation and acceptance of care. A mother explained “Certainly for us it makes things go more smoothly because, as I say, part of it is, you know, you get her compliance better if she’s been involved in the decision” (M14 of a 7 year-old girl). In situations of refusal, HPs reported spending time explaining the adverse consequences, and usually achieved cooperation through negotiation. “It has to be done” e assessing children’s ability for participation in SDM HPs reported that children’s involvement in minor decisions was influenced by factors such as: physical wellness, cognitive development, understanding, maturity, personality, emotional state, coping abilities, and disabilities. Children aged 16 years and upwards were atrributed more capabilities but this was not seen as a general rule. HPs, particularly nurses, reported acquiring a good understanding of children’s capabilities and preferences by chatting informally, observing responses to questions, and building relationships. As one HP said, “It’s more difficult to involve a child in decision-making if they’re very, very young, if they’re very sore, if they’re very sick, if they’re very fed up, if their parents don’t want them involved or don’t want you telling them, if there’s a language barrier, if their coping mechanisms aren’t great” (HP6). Similarly a mother said, “I can tell you there’s definitely times where they just want you to take charge. For her, it’s been times when she’s really gone down, very sick and very ill, post chemo, where you just have to kind of pick them up and take care of them, and you could see 100% they trust you” (M6 of a 14 year-old girl). Children also stated that when they were very unwell (e.g. experiencing fatigue or nausea) they did not want to or were unable to be involved in any decisions. HPs reported that they were sometimes constrained from involving children in SDM due to lack of time, busy workload, urgency of treatment, and lack of choices available. As one HP explained “we’re so determined to get a cure or task completed, that in our hurry we don’t stop to think, you know, will I give them the choice or will I include them because including them might delay us, you know. Again the big object is time” (HP34). “It has to be done” e lacking any real decisions Many HPs and parents felt that children had limited involvement as most decisions were made by adults and then implemented. For example, “At the end of the day I do think we as a team force a lot on the kids and whether we use different words or options a lot of the decision is with us. It’s either the parent or it’s the team. Very rarely it seems to be the kid” (HP5). Likewise a father explained, “The decision-making is, ‘Can I go down the playroom or not?’ or ‘Can I play this PlayStation?’ . They have very limited power of decisions in hospital. Everything else, it’s a very, very controlled environment for them. All those decisions are made for him by everybody else around” (F3 of a 7 year-old boy). Adults felt that the choices they could offer were quite limited due to strict protocols in cancer care and that they had to ‘walk a fine line’ with offering choices whilst ensuring that care adhered to the protocol. One HP said, “The choices they get

278

I. Coyne et al. / European Journal of Oncology Nursing 18 (2014) 273e280

are quite limited or the choices that we offer them are quite limited” (HP 38). The younger children (aged 7e11 years) appeared satisfied with their level of decision-making, but adolescents expressed dissatisfaction with their limited role in SDM and the general loss of control or powerlessness. Although they were involved, some spoke about lacking any choices. For example, “You have to take your tablets, end of. You don’t get a choice, sorry if you want one you just don’t get one. Just find other ways to take control .you don’t get an option” (C3, aged 16). Children may complain or try to delay receiving treatments but they eventually agreed because they knew that the care ‘had to be done’. One girl said, “I’d know I’d have to take it (Liquid food supplement). I hate taking it. It’s a thing that helps me gain weight. and it’s really thick and gooey and I have to take it, but I hate taking it” (C8 aged 12). Some adolescents did not see choices as ‘real decisions’ because their input would not alter the outcome. These girls said, “There aren’t decisions (C7 aged 16) and “I don’t really get to make any decisions” (C6 aged 16). Discussion Similar to previous studies the results of this study showed that parents and HPs were the main decision makers in treatment decisions, rather than the child (Coyne, 2008; Pyke-Grimm et al., 1999; Stewart et al., 2005). Although parents were the primary focus in SDM, their decision-making was also limited due to the lifethreatening diagnosis, urgency, and seriousness of the illness. Parents were aware that they were giving permission as opposed to making an active decision as they must do what the HPs recommend which has also been reported previously (Hinds et al., 1997). Parents’ decision-making was influenced by their trust in professionals’ special expertise and communication of information (KilicarslanToruner and Akgun-Citak, 2013; Pyke-Grimm et al., 2006). Parents found decision-making challenging, and preferred SDM with professionals as reported by others (Gagnon and Recklitis, 2003; Jackson et al., 2008). Treatment ‘had to be done’ as it was for the child’s best interest and survival which has been reported before (KristenssonHallstrom and Nilstun, 1997). The children recognised this fact and were content for adults to make the major decisions because they trusted their parents and saw the HPs as experts in cancer care. However in contrast to other studies, adolescents’ indicated that they preferred to have input into treatment decisions but not sole responsibility. In previous studies adolescents preferred SDM but also wanted to make the final decision (Zwaanswijk et al., 2007). Distinguishing between major and minor decisions was found to be helpful in describing SDM. Decisions were clearly demarcated as either major medical decisions or minor everyday decisions (choices about how care/procedures were delivered). The illness situation and strict protocols prevented children from feeling that they had a decision to make (Woodgate and Degner, 2003; Zwaanswijk et al., 2007). Children could be involved in minor decisions which were choices about their care but which did not compromise it in any way. From adults’ perspectives, involvement was dependent on a child’s characteristics (age, maturity, emotional state), time pressure, illness state, and options available. These factors have been identified as barriers and facilitators of SDM in other studies (Légaré et al., 2008; Miller, 2009; Tates et al., 2002a). From children’s perspectives, the barriers to their participation were adults’ behaviour and illness state. When children were acutely ill, they were less receptive to receiving information, participating in SDM and became more dependent on their parents. Involvement in the minor decisions was seen as leading to increased cooperation, better coping, patient satisfaction and trusting relationships. Involvement also helped make the treatment more palatable and less likely to result in resentment and non-

adherence. For children, involvement meant receiving information, being able to voice their preferences, negotiating and choosing how treatments were administered to them. These ways of involvement have been reported by children as very important for them in prior research (Griffith and Hart, 2000; Hedstrom et al., 2003; Miller, 2009) and choice is a requisite component of SDM (O’Hair et al., 2003). Children valued and desired being involved in these ways and younger children expressed satisfaction with their level of involvement, but adolescents (aged 12e16 years) did express frustration with their limited role in SDM and the general loss of control. Similarly adolescents with cancer have reported that loss of control resulted in a sense of frustration, feelings of inadequacy and anger, and non-adherence with treatment (Wicks and Mitchell, 2010). Limitations This study has some limitations. First the sample was obtained from one unit and was predominantly Caucasian. Observational techniques were not used, thus the study is dependent upon participants’ accounts of their experiences, which are open to interpretation. Children and parents were only interviewed within a year of diagnosis, and their views on SDM could alter over time. A longitudinal study focussing on SDM through phases of treatment, relapse, end-of-life and survivorship may produce more substantive findings. Longitudinal research is needed to examine how SDM may vary with time and across different developmental stages. Implications for practice Children wanted choices and really appreciated involvement in SDM but their opportunities for participation were quite limited. Therefore, adults need to consider the many ways children can participate and allow choices where possible. Children’s preferences for active or passive decision-making may vary during the cancer treatment for many reasons (e.g. stage of illness, seriousness of condition, types of decisions) thus participation must be seen as a going process that is both relational and situated (Coyne and Harder, 2011). Adults need to adopt an individualised flexible approach so that children can have an active, shared or passive role as and when they prefer. Children’s preferences are likely to change over time, thus assessment should not be a one-time event but a process that occurs throughout the cancer treatment. Parental support was a key influence on children’s participation, therefore, they need assistance and guidance on how to involve their child. Interventions need to be developed for parents and children so that parents can promote and encourage their child’s participation in SDM (Coyne et al., 2011). Nurses are the main providers of daily care and have close contact with families, therefore, they play a central role in facilitating children’s participation in SDM. By promoting opportunities for involvement, advocating for children’s needs and values, and encouraging staff and parents to involve children, nurses can make a real difference to children’s emotional well-being. Including children in treatment discussions, eliciting preferences, offering choices, and incorporating preferences should be a consideration for all members of the multidisciplinary team (MDT). Adults should receive education and coaching on how to assess children’s preferences and how to facilitate their participation as communication skills training can have a beneficial effect on behaviour change in professionals caring for cancer patients (Moore et al., 2004). Conclusion This research makes an important contribution to the body of knowledge because it is the first study in Ireland that included

I. Coyne et al. / European Journal of Oncology Nursing 18 (2014) 273e280

triadic perspectives on shared decision-making (SDM). Although many variables can influence participants’ roles in SDM, the nature of the illness emerged as the key factor, which influenced behaviours and limited children’s participation. ‘It had to be done’ (because cancer is life-threatening) was the dominant paradigm which pervaded all participants’ accounts, and which led to decisions being clearly demarcated into major or minor decisions. The focus on the best treatment in the child’s best interest resulted in adults’ having decisional authority (Whitney et al., 2006), which was unproblematic for most participants. The exception was adolescents who expressed frustration with the loss of decisionmaking control and this is problematic. Loss of control has been reported as one of the major stressors on adolescents’ physical and emotional well-being (McCaffrey, 2006), and a factor associated with non-adherence in adolescents with cancer (Butow et al., 2010). Involvement in minor decisions was beneficial for all participants, thus the importance of offering children opportunities to be involved in decisions cannot be over emphasised. Increased involvement of children in SDM may lead to more positive outcomes for treatment, improved well-being and decreased stress years after the disease is treated. But this hypothesis needs to be treated with caution as current evidence on how SDM impacts on patient outcomes remains inconclusive (Joosten et al., 2008). SDM with children is a novel under-researched area and presently we lack strong evidence on the impact of SDM on adherence, decisionmaking skills, and health related outcomes. Future research should examine these issues. Although SDM in childhood cancer is challenging, children should always be involved, they should be at the heart of patient care and services should be tailored to their needs. Conflict of interest None declared. Funding We would like to gratefully acknowledge the funding received from Cancer Research Ireland. The funders had no involvement in the study design, in the collection, analysis and interpretation of the data, in the writing of the manuscript, and the decision to submit the manuscript for publication. Acknowledgement We would like to thank the children, young people, parents and healthcare professionals for sharing their experiences of shared decision-making with us. We are sincerely grateful to Sinead McLoughlin who acted as a point of contact on the ward and assisted in the recruitment of participants. References Boylan, P., 2004. Children’s Voices Project: Feedback from Children and Young People About Their Experience and Expectations of Healthcare. Commission for Health Improvement, UK, pp. 1e37. Butow, P., Palmer, S., Pai, A., Goodenough, B., Luckett, T., King, M., 2010. Review of adherence-related issues in adolescents and young adults with cancer. Journal of Clinical Oncology 28, 4800e4809. Cavet, J., Sloper, P., 2005. Children and Young People’s Views on Health and Health Services: a Review of the Evidence. National Children’s Bureau, London, pp. 1e 83. Charmaz, K., 2006. Constructing Grounded Theory: a Practical Guide Through Qualitative Analysis. Sage, London. Cohen, J., Emanuel, J., 1998. Positive Participation: Consulting and Involving Young People in Health-related Work: a Planning and Training Resource. Health Education Authority, London.

279

Coyne, I., 2006. Consultation with children in hospital: children, parents’ and nurses’ perspectives. Journal of Clinical Nursing 15, 61e71. Coyne, I., Harder, M., 2011. Children’s participation in decision-making: balancing protection with shared decision-making using a situational perspective. Journal of Child Health Care 15, 312e319. Coyne, I., O’Mathúna, D.P., Gibson, F., Shields, L., Sheaf, G., 2011. Interventions for promoting participation in shared decision-making for children with cancer. Cochrane Database of Systematic Reviews. http://dx.doi.org/10.1002/ 14651858.CD008970. Issue 2. Art. No.: CD008970. Coyne, I.T., 2008. Children’s participation in consultations and decision-making at health service level: a critical review of the literature. International Journal of Nursing Studies 45, 1682e1689. Coyne, I.T., Hayes, E., Gallagher, P., Regan, G., 2006. Giving Children a Voice: Investigation of Children’s Experiences of Participation in Consultation and Decision-making in Irish Hospitals. Office of the Minister for Children, Dublin. Dixon-Woods, M., Young, B., Heney, D., 2002. Childhood cancer and users’ views: a critical perspective. European Journal of Cancer Care 11, 173e177. Gabe, J., Olumide, G., Bury, M., 2004. ‘It takes three to tango’: a framework for understanding patient partnership in paediatric clinics. Social Science & Medicine 59, 1071e1079. Gagnon, E.M., Recklitis, C.J., 2003. Parents’ decision-making preferences in pediatric oncology: the relationship to health care involvement and complementary therapy use. Psycho-Oncology 12, 442e452. Gatta, G., Corazziari, I., Magnani, C., Peris-Bonet, R., Roazi, P., Stiller, C., EUROCARE Working Group, 2003. Childhood cancer survival in Europe. Annals of Oncology 14, 119e127. Griffith, K.C., Hart, L.K., 2000. Characteristics of adolescent cancer survivors who pursue postsecondary education. Cancer Nursing 23, 468e476. Hedstrom, M., Haglund, K., Skolin, I., Vov Essen, L., 2003. Distressing events for children and adolescents with cancer: child, parent and nurse perceptions. Journal of Pediatric Oncology Nursing 20, 120e132. Hinds, P., Oakes, L., Furman, W., Foppiano, P., Olson, M.S., Quargnenti, A., et al., 1997. Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer. Oncology Nursing Forum 24, 1523e1528. Hinds, P., Oakes, L., Furman, W., Quargnenti, A., Olson, M.S., Foppiano, P., et al., 2001. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology. Cancer Nursing 24, 122e136. Hinds, P.S., Oakes, L., Quargnenti, A., Furman, W., Bowman, L., Gilger, E., et al., 2000. An international feasibility study of parental decision making in pediatric oncology. Oncology Nursing Forum 27, 1233e1243. Hinds, P.S., Drew, D., Oakes, L.L., Fouladi, M., Spunt, S.L., Church, C., et al., 2005. Endof-life care preferences of pediatric patients with cancer. Journal of Clinical Oncology 23, 9146e9154. Jackson, C., Cheater, F.M., Reid, I., 2008. A systematic review of decision support needs of parents making child health decisions. Health Expectations 11, 232e 251. Joffe, S., Fernandez, C.V., Pentz, R.D., Ungar, D.R., Mathew, N.A., Turner, C.W., et al., 2006. Involving children with cancer in decision-making about research participation. Journal of Pediatrics 149, 862e868. Joosten, E.A.G., DeFuentes-Merillas, L., De Weert, G., Sensky, T., van der Staak, C., de Jong, C., 2008. Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychotherapy Psychosomatic 77, 219e226. Kilicarslan-Toruner, E., Akgun-Citak, E., 2013. Information-seeking behaviours and decision-making process of parents of children with cancer. European Journal of Oncology Nursing: The Official Journal of European Oncology Nursing Society 17, 176e183. Kristensson-Hallstrom, I., Nilstun, T., 1997. The parent between the child and the professional e some ethical implications. Child: Care, Health and Development 23, 447e455. Légaré, F., Ratté, S., Gravel, K., Graham, I.D., 2008. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. Patient Education and Counseling 73, 526e535. McCaffrey, N.C., 2006. Major stressors and their effects on the well-being of children with cancer. Journal of Pediatric Nursing 21, 59e66. McIlfatrick, S., Sullivan, K., McKenna, H., 2006. Exploring the ethical issues of the research interview in the cancer context. European Journal of Oncology Nursing 10, 39e47. Miller, V.A., 2009. Parentechild collaborative decision making for the management of chronic illness: a qualitative analysis. Families, Systems, & Health 27, 249e266. Moore, P.M., Wilkinson, S.S.M., Rivera-Mercado, S., 2004. Communication skills training for health care professionals working with cancer patients, their families and/or carers. Cochrane Database of Systematic Reviews. http:// dx.doi.org/10.1002/14651858.CD003751.pub2. Issue 2. Art. No.: CD003751. O’Hair, D., Villagran, M.M., Wittenberg, E., Brown, K., Ferguson, M., Hall, H.T., et al., 2003. Cancer survivorship and agency model: implications for patient choice, decision making and influence. Health Communication 15, 193e202. Pyke-Grimm, K.A., Degner, L., Small, A., Mueller, B., 1999. Preferences for participation in treatment decision making and information needs of parents of children with cancer: a pilot study. Journal of Pediatric Oncology Nursing 16, 13e24. Pyke-Grimm, K.A., Stewart, J.L., Kelly, K.P., Degner, L.F., 2006. Parents of children with cancer: factors influencing their treatment decision making roles. Journal of Pediatric Nursing 21, 350e361.

280

I. Coyne et al. / European Journal of Oncology Nursing 18 (2014) 273e280

Runeson, I., Hallstrom, I., Elander, G., Hermeren, G., 2002. Children’s participation in the decision-making process during hospitalization: an observational study. Nursing Ethics 9, 583e598. Snethen, J.A., Broome, M.E., Knafl, K.A., Deatrick, J.A., Angst, D.,B., 2006. Family patterns of decision-making in pediatric clinical trials. Research in Nursing and Health 29, 223e232. Speziale, H.J.S., Carpenter, D.R., 2007. Qualitative Research in Nursing: Advancing the Humanistic Imperative, fourth ed. Lippincott Williams & Wilkins, Philadelphia. Spinetta, J.J., Masera, G., Jankovic, M., Oppenheim, D., Martins, A.,G., Arush, M.,W.,B., et al., 2003. Valid informed consent and participative decision-making in children with cancer and their parents: a report of the SIOP Working Committee on psychosocial issues in pediatric oncology. Medical Pediatric Oncology 40, 244e246. Spinetta, J.J., Masera, G., Eden, T., Oppenheim, D., Martins, A.G., van DongenMelman, J., et al., 2002. Refusal, non-compliance, and abandonment of treatment in children and adolescents with cancer: a report of the SIOP Working Committee on psychosocial issues in pediatric oncology. Medical Pediatric Oncology 38, 114e117. Stack, M., Walsh, P.M., Comber, H., Ryan, C.A., O’Lorcain, P., 2007. Childhood cancer in Ireland: a population-based study. Archives of Disease in Childhood 92, 890e 897. Stewart, J.L., Pyke-Grimm, K.A., Kelly, K.,P., 2005. Parental treatment decision making in pediatric oncology. Seminars in Oncology Nursing 21, 89e97. Tates, K., Elbers, E., Meeuwesen, L., Bensing, J., 2002a. Doctor-parent-child relationships: a “pas de trois”. Patient Education and Counseling 48, 5.

Tates, K., Meeuwesen, L., Bensing, J., Elbers, E., 2002b. Joking or decision-making? Affective and instrumental behaviour in doctor-parent-child communication. Psychology and Health 17, 281e295. Whitney, S.N., Ethier, A.M., Fruge, E., Berg, S., McCullough, L.B., Hockenberry, M., 2006. Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. Journal of Clinical Oncology 24, 160e165. Wicks, L., Mitchell, A., 2010. The adolescent cancer experience: loss of control and benefit finding. European Journal of Cancer Care 19, 778e785. Woodgate, R., Degner, L.F., 2002. “Nothing is carved in stone”: uncertainty in children with cancer and their families. European Journal of Oncology Nursing 6, 191e202. Woodgate, R.L., Degner, L.F., 2003. Expectations and beliefs about children’s cancer symptoms: perspectives of children with cancer and their families. Oncology Nursing Forum 30, 479e491. Young, B., Dixon-Woods, M., Windridge, K.C., Heney, D., 2003. Managing communication with young people who have a life threatening chronic illness: a qualitative study of patients and parents. British Medical Journal 326, 305e309. Young, B., Moffett, J.K., Jackson, D., McNulty, A., 2006. Decision-making in community-based paediatric physiotherapy: a qualitative study of children, parents and practitioners. Health and Social Care in the Community 14, 116e 124. Zwaanswijk, M., Tates, K., van Dulmen, S., Hoogerbrugge, P., Kamps, W., Bensing, J., 2007. Young patients’, parents’, and survivors’ communication preferences in paediatric oncology: results of online focus groups. BMC Pediatrics 7, 35.