Parental involvement in decision‐making about their child’s health care at the hospital

Abstract Aim To explore parents' experiences on parental involvement in decision‐making about their child's health care at the hospital and to identify how health professionals can improve parental involvement. Design An explorative descriptive qualitative study within a constructivist research paradigm. Methods Individual semistructured interviews were conducted with a purposive sample of 12 parents. Qualitative content analysis was performed. Results This study gives unique insight into how parental involvement in children's healthcare decisions influence parents' ability to cope with the parental role at the hospital. The results showed that parents' competence and perceived influence and control over their child's health care appeared to affect how they mastered their role of involvement in decision‐making. Individually tailored and respectful facilitation of parental involvement in these decisions by health professionals seemed to improve parents' influence, control and ability to cope with the parental role. Nurses should thus strengthen parents' sense of coherence enhancing the quality of health care.


| INTRODUC TI ON
In many Western countries parents have a legal right to participate in decision-making (DM) about their child's health care to ensure that health care is provided in accordance with the children's and the families' needs and preferences (Entwistle & Watt, 2006;Thompson, 2007). From a health promotion perspective, this provides parents the opportunity to improve their personal control over their child's health care and their own life circumstances (Eriksson & Lindström, 2008). This is in line with the World Health Organization's (WHO) health promotion strategy, which recommends supportive environments and implementation of salutogenesis in societies (Eriksson & Lindström, 2008;WHO, 2009). The theory of salutogenesis is about peoples' dispositions and resilience to face life and its challenges (Antonovsky, 2012). Salutogenesis focuses on factors that promote health and the ability to cope by facilitating people's sense of coherence; enhancing their perception of life as meaningful, comprehensible and manageable. According to this strategy health professionals (HPs) can strengthen parents' sense of coherence when involving parents in children's healthcare decisions by that is, clarifying their legal rights, treatment options and daily caring routines.
In Norway as in most Western countries, parents are user representatives of their children until their children can fully represent themselves (Patients' Rights Act, 1999). As the main guiding principle, parents are responsible of giving consent to health and medical examinations and treatments on behalf of their child until they are 16 years old. In addition, parents have a legal right to participate in DM to customize their child's health care. This implies that parents have the opportunity to be involved in and influence the DM concerning individual modifications to their child's care, examinations | 51 AARTHUN eT Al. and treatments. This is in line with family-centred care approaches, which expect parents to participate in partnership with HPs in the coproduction of children's health care (Smith, Swallow, & Coyne, 2015).
Parents have valuable knowledge about their child and are important helpers in implementing their children's health care (Harrison, 2010;Watts et al., 2014). Increased parental involvement in DM about children's health care is expected to increase the individual customization of children's health care and thereby improve the quality of care and safety (Ministry of Health & Care services, 2009).
Although parental involvement in decisions about their child's health care is widely acknowledged, parents do not participate as much as they would like to (Aarthun & Akerjordet, 2014;Foster, Whitehead, & Maybee, 2010). In addition, they seem to be in a particularly vulnerable situation when participating in these DM processes. Moreover, this new conceptualization of parental involvement has led to significant changes in the role of both HPs and parents (Aarthun & Akerjordet, 2014), which may be challenging to implement in clinical settings. There is thus a need to explore current practice on parental involvement in DM to gain increased knowledge about parents' role as user representatives of their children.

| Background
Patient involvement in health services-related DM is a complex concept and includes several approaches (Entwistle & Watt, 2006;Thompson, 2007). One main approach focuses on the patient-professional interaction and patients' degree of involvement and influence during the DM process (Wirtz, Cribb, & Barber, 2006). The shared DM model is a part of this approach were the parents and the HPs are expected to share information and reach consensus (Kon, 2010). This model is relevant when parents participate in DM concerning the customizing and preparation of their child's health care. However, the parents' influence is restricted by HPs' responsibility of giving a health care that is justifiable and within the hospital's framework (Patients' Rights Act, 1999). Another DM approach focus on parents' cognitive and emotional information processing, where psychosocial factors and health literacy are important aspects (Edwards, Davies, & Edwards, 2009;Entwistle & Watt, 2006).
Health literacy refers to the essential cognitive and social skills parents need when acquiring knowledge and using information to make decisions about their child's health and health care (Nutbeam, 2009).
Previous studies report that parents want to be involved in decisions about their child's health care to varying forms and degrees of involvement and this desire may change over time (Aarthun & Akerjordet, 2014). Their preference of involvement seems to depend on factors such as parents' demographic characteristics (e.g., age, level of education, income and marital status), emotional condition and competence (Aarthun & Akerjordet, 2014;Jackson, Cheater, & Reid, 2008;Lipstein, Brinkman, & Britto, 2012). Other influencing factors are type of illness, whether the illness is acute or chronic, the seriousness of the condition and parents' prior experiences with health service (Lipstein et al., 2012). Health-related decisions have, however, become more complex because of enhanced multidisciplinary practice and increased advanced treatment methods (Lipstein et al., 2012;Ofstad, Frich, Schei, Frankel, & Gulbrandsen, 2014). Many parents have limited understanding of illness, treatment and how health services function (Corlett & Twycross, 2006). Moreover, several parents experience emotional distress because of their child's health condition, which may hinder their involvement (Jackson et al., 2008;Tallon, Kendall, & Snider, 2015). Accordingly, parents seem to be in a particularly vulnerable situation in their role as user representatives of their children. Mainly, having a need for support from professionals when being involved in their child's healthcare decisions (Aarthun & Akerjordet, 2014). However, it varies whether and how HPs involve parents in these decisions (Aarthun & Akerjordet, 2014).
There is scarce knowledge about parents' role and needs in terms of their involvement in DM about preparing children's health care in hospitals (Aarthun & Akerjordet, 2014;Lipstein et al., 2012;Shields et al., 2012). In our research, this is considered as an interdependent process, which includes information exchange, discussions, deliberations and reaching consensus using the shared DM model. An increased understanding of the challenges and needs of parents concerning their involvement in their child's healthcare decisions has the potential to give important knowledge and implications for clinical practice.

| Objective
The objectives of this study were to explore parents' experiences on parental involvement in DM about their child's health care at the hospital and to identify how HPs can improve parental involvement.

| Design
This study used an exploratory descriptive qualitative design within a constructivism research paradigm, an interpretive approach (Lincoln, Lynham, & Guba, 2013). Semistructured interviews were used to generate data about the informants' descriptions of their experiences (Peräkylä & Ruusuvuori, 2013). According to the research paradigm, interviews are considered complex social performances where both the interviewer and the informants are active contributors in coconstructing the informants' account of their experiences (Silverman, 2011).

| Selection of informants
A purposive selection procedure was applied to select informants at the Department of Paediatrics of a university hospital in Norway (Silverman, 2013). New informants were included up to saturation (N + 1), meaning that when sufficient data had been obtained and no new variations in knowledge appeared, only one more interview was performed (Daly et al., 2007). This resulted in 12 informants. The inclusion criteria were individuals with parental responsibility for a child who was staying or had stayed in a paediatric ward at the hospital in the last 3 months. The parents also needed to have sufficient fluency in Norwegian to participate in the interview. In In addition, the sample should represent parents of both genders, parents of children ranging in age from newborn to 16 years and parents who had been admitted to different paediatric wards within the hospital. Clinical nurses at the three different paediatric inpatient wards recruited the informants.

| Data collection and setting
The interviews were conducted from February to September 2014.
The data were collected in one individual semistructured interview per informant that was audio recorded (Ryan, Coughlan, & Cronin, 2009). The interview guide was based on a systematic review (Aarthun & Akerjordet, 2014) and the theory of salutogenesis (Antonovsky, 2012) and user involvement (Entwistle & Watt, 2006;Thompson, 2007). Two of the authors agreed on the included questions. Typical questions to the informants were: "Please tell me about your child's last admission to the hospital" and "How were you involved in DM about preparing your child's healthcare?" Ten informants were interviewed during their child's hospitalization, one was interviewed 4 days later at the hospital and the other 7 days later at the informant's workplace. The interviews lasted between 35 and 90 min. After the interviews, the informants answered a survey with demographic questions that gave information on their background (Table 2). In addition, the interviewer made notes about the interview setting. The recorded interviews were transcribed verbatim, with the exception of identifying details, which were anonymized or removed.
The department of paediatrics offered health care to children from the ages of 0-16 years and has a neonatal ward, an infection ward and a general medical ward. Approximately 3,500 children are hospitalized annually and 13,000 receive outpatient consultations each year. Interprofessional cooperation is emphasized at the department level, meaning that individuals in different health professions, such as registered nurses, physicians, physiotherapists and dietitians, work closely in teams. They collaborate in the DM regarding the children's health care. In addition, individuals in each profession are responsible for involving parents in the aspects of the children's care plan that fall in their subject area.

| Analysis
To facilitate the organization of data, the transcripts were entered into the data management system NVivio 10 for manual coding (Bazeley & Jackson, 2013). Two of the authors (AA and KA) performed the analysis according to the qualitative content analysis described by Graneheim, Lindgren, and Lundman (2017), Graneheim and Lundman (2004). Initial coding and the identification of preliminary categories was performed by AA. Further analysis was discussed with KA and the authors reached a consensus on the final composite analysis. First, the transcripts were read several times to give an impression of the parents' experiences of the parental role and involvement in DM about their child's health care in the hospital. Second, relevant transcripts were extracted and divided into meaning units which are sentences that contain a central meaning related to the context (Graneheim & Lundman, 2004). The condensed meaning units were then coded and compared to examine similarities and differences. This manifest content analysis resulted in a set of subcategories and categories.
Third, after comparison and interpretation of the manifest categories, one main theme and two subthemes were identified that reflected the latent content of the transcripts; a higher level of data interpretation. Table 1 gives information from the analysis process.

| Methodological considerations
The researchers conducted this qualitative study according to the constructive research paradigm aiming scientific rigour and trustworthiness (Carter & Little, 2007;Graneheim et al., 2017). This was influenced by the researchers preunderstanding and context, culture and time (Altheide TA B L E 1 Examples from the analysis based on Graneheim and Lundman (2004)  & Johnson, 2013). All authors had a professional preunderstanding as experienced clinicians in various fields such as paediatric physiotherapy, critical care nursing and paediatric medical practice in hospital settings.
The interviewer was a paediatric physiotherapist who was familiar with the hospital wards, which increased the understanding of the informants' descriptions of the context (Silverman, 2011). The notes describing the interview settings gave valuable additional information about the informants' role and the context during the interviews. The applied research paradigm assume that the findings are a product of the researchers' interpretations of the informants' accounts of their experiences as situated in time (Allen & Cloyes, 2013;Choen & Crabtree, 2008), accordingly the informants were not asked to confirm the findings.

| Ethics
The study adhered to the general ethical principles outlined in the Declaration of Helsinki (World Medical Association, 2013). All informants received both oral and written information about the study. They were also informed about the voluntary nature of participation and the ability to withdraw from the study at any time and were guaranteed confidentiality. The informants gave written informed consent to participate in the study.

| The sample
The demographics of the informants are presented in Table 2. The sample consisted of four parents from each of the three paediatric wards. One parent was nonnative Norwegian and one was married to a nonnative. The informants' children were aged from being newborn to 11 years old, with various healthcare needs.

| Identified themes
The main theme, "a demanding parental role", was identified with two subthemes: "parental competence and need for information" and "parental involvement and control". The parents were highly concerned about their child's health care and perceived their parental role as user representatives of their child in the hospital to be demanding. This was particularly when the parents felt lack of continuing of health care, which led to increased stress, concern and insecurity.

| Parental competence and need for information
Lack of parental competence and insufficient information from the HPs appeared to make the parental role of involvement in DM demanding.  Some parents experienced lack of being involved in decisions or a sense of not being listened to by HPs, which led to powerlessness, insecurity and little self-confidence when they sought health care for their child. One mother expressed it as such:

| Parental involvement and control
One of the worst things you can experience as a mother is having to explain the same things several times and not being listened to. You sit there and feel so powerless. (7) To enhance parental influence and control on their child's health However, several parents who were involved in preparing their child's health care struggled to ask for help to address their own needs, wishes and preferences. In these circumstances, it was easier for the parents to express their own needs and opinions when they had regular conversations with the HPs, particularly when the professionals showed genuine concern for the parents' situation.
This indicated that the parents preferred being involved in preparing their child's health care through regular conversations with wellknown HPs. One mother expressed this as follows:

| D ISCUSS I ON
The findings indicate that parents were highly concerned about their child's health care and were in a very challenging and vulnerable situation during involvement in decisions about their child's health care. Parents' ability to cope in these DM seemed to depend on their competence and how they perceived their influence and control in DM. However, HPs' facilitation of parents' active involvement in these decisions and provision of sufficient and consistent information seemed to empower the parents and increase their active involvement in DM. Accordingly, the parents' ability to cope with the parental role in the hospital appeared to be strengthened by promoting their perception of life as meaningful, comprehensible and manageable; their sense of coherence, when involving parents in children's healthcare decisions.
The findings extend previous research on parental involvement in DM concerning children's health care from a health promotion perspective. The findings, that is, a demanding parental role, the significance of parental competence and understanding and the importance of receiving consistent and sufficient information from HPs, confirm previous research (Aarthun & Akerjordet, 2014;Corlett & Twycross, 2006;Foster et al., 2010). However, this study contributes new insight into parents' role as user representative of their children which seems to be an important aspect of parents' ability to cope with the parental role in the hospital (Antonovsky, 2012).
The findings also highlight HPs' essential role in both facilitating parents' active involvement in children's healthcare decisions and in improving parents' ability to cope with their parental role during hospitalization. In this regard, HPs are important contributors to the provision of health promotion, which should be more emphasized in this context.
In line with previous research, our study shows that parents need a substantial amount of information about their child's health condition, disease and the healthcare system to be able to participate in decisions related to their child's health care (Jackson et al., 2008;Power & Franck, 2008;Uhl, Fisher, Docherty, & Brandon, 2013).
Parents with more experience from their child's hospitalization had a good understanding of their child's condition and the healthcare system and were more actively involved in preparing their child's health care (Lipstein et al., 2012). Nonetheless, it was still difficult for them to participate in decisions about the medical component of health care due to a lack of knowledge (Power & Franck, 2008;Uhl et al., 2013). Furthermore, parents with a limited knowledge of the Norwegian health services and culture appeared to have more difficulty communicating and cooperating with the HPs. These factors are reported in the literature on patient's health literacy, which also seems to be an important factor affecting parental knowledge and understanding of their child's condition and health care (Nutbeam, 2009;Sorensen et al., 2015). HPs should therefore become more aware of parents' health literacy and need of individual facilitation when involving parents in their child's healthcare decisions. in an already demanding situation and can limit their coping with the parental role in the hospital (Edwards et al., 2009;Tallon et al., 2015). On the other hand, our findings support the notion that HPs' active involvement of parents in their child's healthcare decisions increases parents' competence and engagement in preparing their child's health care (Aarthun & Akerjordet, 2014;Uhl et al., 2013).
These findings imply that active involvement and support from HPs enhance parents' influence and control over their child's health care. This requires HPs to have a high degree of empathy to actively listen to the parents' thoughts, opinions and preferences to improve their involvement and ability to cope with their parental role (Eriksson & Lindström, 2008;Halpern, 2014).

| Limitations and further research
The study's inclusion criteria were met. The sample, however, consisted of few males and no single parents, which is a potential limitation. Nevertheless, quantitative studies are required to confirm the results (Polit & Beck, 2010). Qualitative research is needed to improve the understanding of HPs' role in facilitating parental involvement in DM. Further, more research is required to explore how children are integrated in healthcare DM (e.g., their thoughts, wishes and opinions) and how this influence parental involvement during hospitalization.
Finally, further knowledge is needed on the parental involvement in DM amongst migrant parents with language and cultural barriers.

| CON CLUS ION
This study gives unique insight into parents' perspectives on their parental role as user representative of their children at the hospital primarily from a health promotion perspective. In particular, it expands on the literature on how parental involvement in children's healthcare decisions influence parents' ability to cope with the parental role at the hospital.
Nurses and other HPs should thus safeguard individualized and respectful facilitation of parental involvement in preparing children's health care to strengthen parent's sense of coherence. In addition, to ensure the quality and provision of family-centred care during children's hospitalization.

ACK N OWLED G EM ENTS
We would like to thank the informants, the leaders in the Department of Paediatrics and the nurses who recruited the informants.

CO N FLI C T O F I NTE R E S T
The authors declare no potential conflicts of interest with respect to the research, authorship and publication of this article.

AUTH O R CO NTR I B UTI O N S
All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (https://www. icmje.org/recommendations/)]: • substantial contributions to conception and design, acquisition of data or analysis and interpretation of data; • drafting the article or revising it critically for important intellectual content.