Article
Experiences of parenting a child with medical complexity in need of acute hospital care
Journal of Child Health Care 1–9 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1367493514551308 chc.sagepub.com
Monica Hagvall1,2, Margareta Ehnfors2 and Agneta Anderze´n-Carlsson2,3
Abstract Parents of children with medical complexity have described being responsible for providing advanced care for the child. When the child is acutely ill, they must rely on the health-care services during short or long periods of hospitalization. The purpose of this study was to describe parental experiences of caring for their child with medical complexity during hospitalization for acute deterioration, specifically focussing on parental needs and their experiences of the attitudes of staff. Data were gathered through individual interviews and analyzed using qualitative content analysis. The care period can be interpreted as a balancing act between acting as a caregiver and being in need of care. The parents needed skilled staff who could relieve them of medical responsibility, but they wanted to be involved in the care and in the decisions taken. They needed support, including relief, in order to meet their own needs and to be able to take care of their children. It was important that the child was treated with respect in order for the parent to trust the staff. An approach where staff view parents and children as a single unit, as recipients of care, would probably make the situation easier for these parents and children. Keywords Complex care, disability, qualitative approaches
Introduction Children with medical complexity comprise a diverse group. Each child has his or her own personality and circumstances as well as individual limitations. The group is therefore difficult to ¨ rebro University Hospital, O ¨ rebro, Sweden Department of Paediatric Care, O ¨ rebro University, O ¨ rebro, Sweden School of Health and Medical Sciences, O 3 ¨ rebro University Hospital, O ¨ rebro, Sweden Centre for Health Care Sciences, O 1 2
Corresponding author: ¨ rebro University Hospital, S-701 85 O ¨ rebro, Sweden. Monica Hagvall, O Email: [email protected]
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define (Cohen et al., 2011). For example, medical complexity may include extensive physical disabilities, developmental disabilities and visual or hearing impairments, as well as problems with nutrition, bowel and bladder function often in addition to autism, epilepsy, scoliosis and pain. ¨ lund et al., Concentration and perception difficulties are common, as are problems with sleep (O 2003; RBU, 2012). The common denominator for all children with medical complexity is ¨ lund et al., 2003; RBU, 2012). In Sweden, their great need for help and support in everyday life (O approximately 7000 children and adults suffer from medical complexity (Borgstro¨m and Carlberg, 2010). The number of children with medical complexity is rising (Graham et al., 2009; McCann et al., 2012). These children often need emergency care, which requires a knowledgeable staff, as acute illness further complicates their situation (Graham et al., 2009). Tadema and Vlaskamp (2010) found that the situation for parents of these children is usually highly complex; they coordinate health care for the child and help the child with personal care and daily activities. Parents in their study stated that lack of sleep, the child’s health problems and the physical and mental load are the most difficult in their everyday life, and these burdens increase when the child is ill. When contacting the health care system parents are often exhausted because of the increased needs related to the illness. In Swedish paediatric care, it is assumed that parents will remain at their children’s bedside throughout a hospitalization. However, parents may feel that the role they are expected to play during hospitalization is unclear, which led to increased stress and conflicts with the staff (Hallstro¨m et al., 2002). Parents have stated that better communication between staff and parents would clarify who was responsible for various aspects of health care (Avis and Reardon, 2008, Graham et al., 2009). To provide parents with the best possible support, it is important to understand their feelings about the situation (Warner, 2000). Currently, there is limited knowledge of the parents’ situation, as pointed out also by the Swedish disability association (Borgstro¨m and Carlberg, 2010). Thus the purpose of this study was to describe parental experiences of caring for their child with medical complexity during hospitalization for acute deterioration. The specific aim was to study parental needs and their experiences of the staff’s attitude.
Method A descriptive design was used. Qualitative methods are regarded as appropriate when the aim is to gain knowledge and understanding about an individual’s experience (Morse and Richards, 2002). In line with the design, data were gathered using semi-structured interviews (Kvale and Brinkman, 2009) that were analyzed using qualitative content analysis (Graneheim and Lundman, 2004).
Sample and data collection The inclusion criteria were being a parent of a child aged 0–18 years who had at least three disabilities, was registered at the Child and Youth Habilitation Centre and had previously been admitted to a paediatric ward at a university hospital in central Sweden for acute care for at least one day between October 2011 and May 2012. In addition, the parent had to have stayed on the ward along with the child. Parents of children whose disabilities were newly discovered were excluded. Parents of 18 children met the inclusion criteria and were sent letters informing them about the study. Nine parents chose to participate (seven mothers and two fathers aged 30–50 years, M ¼ 37 2 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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Table 1. Interview guide. Introductory question: Please, tell me about your experience of your most recent acute admission at the paediatric ward. Needs: Please, describe your needs during your most recent acute admission at the paediatric ward? Experience of attitude: How did you experience the attitude of the staff? Can their response be improved, and if so, how would you like to be met?
years) of which one had a non-Nordic background. Their children varied in age (2–13 years, M ¼ 8 years), and all lived at home with both parents. The children had diagnoses such as hydrocephalus, cerebral palsy, myelomeningocele, epilepsy or autism and had been admitted to the hospital ward for a couple of days to one month. Data were collected by the first author through digitally recorded individual interviews (Kvale and Brinkman, 2009), lasting 30–70 minutes. In line with the aim of the study, the interview guide covered questions regarding parental experiences from the child’s most recent acute admission to the paediatric ward (Table 1). Parents were asked follow-up questions based on their responses. Prior to the interviews, the participants signed an informed consent.
Data analysis Qualitative inductive content analysis was conducted based on the description by Graneheim and Lundman (2004). The interview transcripts were read thoroughly several times to obtain a sense of the whole, divided into meaning units, condensed, abstracted and labelled with a code. These were sorted into eight categories, which represent the manifest content. The latent content was formulated into two sub-themes and a unifying main theme.
Ethics Parents of a child with medical complexity are in a vulnerable situation and often in time pressure (MacDonald and Callery, 2008). Participation in a study like this may be a sacrifice for them. Nevertheless, from an ethical point of view, it is important not to exclude important groups of individuals in research (Polit and Beck, 2012), therefore, we found it crucial to ask the parents of their experience when accompanying their child with medical complexity at an acute admission. It was also regarded as important not to exclude parents who were not able to speak Swedish, therefore one interview was conducted with a certified interpreter. The participating parents expressed their desire to share their experiences and wanted to participate. The time and place for the interview were decided upon their preferences to facilitate for them as much as possible. We do not know why some declined participation, but it could have been due to time pressure or due to being afraid of criticizing the care their children repeatedly were in need of. Permission to conduct the study was obtained from the Regional Ethical Review Board in Uppsala, Sweden (reg. no.: 2011/487).
Results Although there is a double aim of the study – to describe parental needs and their experiences of the staff’s attitude – the main results were interpreted in one theme, that is, a balancing act between 3 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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acting as a caregiver and being in need of care, illustrating the vulnerable situation at the hospital, where the parents served as the child’s ambassador in various ways.
Being in a vulnerable parental situation The parents’ narratives revealed a sense of vulnerability. They were dependent on the health care system but perceived a lack of knowledge and understanding from the staff. They felt that they were left to fend for themselves, and the result was a feeling of insecurity. The parents expressed a need for support in their vulnerable situation. This could be met by assistance with relief, sensitivity to the personal needs of the parent and the opportunity for supportive counselling. When parents met knowledgeable staff whom they knew personally, they felt secure despite their vulnerable situation. Lack of knowledge and understanding among staff. The parents felt that the medical knowledge was uneven among the staff and sometimes inadequate. They lacked knowledge of the child’s various diagnoses, and disabilities wherefore the parents felt they had to assume greater responsibility in the medical field, and thus felt less secure in the hospital than at home. The staff sometimes acted in an uncertain way towards both the child and the parents. The parents experienced that the staff at times had difficulties to understand the child’s best or to deal with issues such as spasticity when drawing blood samples. There are actually quite a few nurses who said, in a somewhat irritated way, Oh my, you sure are getting tense, you’re going to have to relax now. And all I can think is, don’t you know anything about cerebral palsy? (IP1)
The parents also wanted the staff to show greater understanding of their own situation. They described how they often suffered from lack of sleep and how they wished staff would show some understanding of their consequent mood swings. And for our part, we’re wrecks all the time when you come right down to it. And I think it needs to be an understanding of that too. (IP2)
Sense of being left on their own. Several parents described that they felt they were left to manage on their own, with a great responsibility to observe and help the acutely ill child. They felt that the staff expected the parents to be independent since they had been admitted to the ward with the child on numerous occasions. Sometimes we don’t see much of the staff when we’ve been in the hospital for a long period. They seem to trust that we’ll see everything and take care of everything. And we have asked ourselves, yes, but what if we miss something? So sometimes we’ve had a bit too much responsibility. (IP3)
The parents felt even more insecure during the nights, and since they felt that the staff did not monitor the child adequately they found it difficult to relax and sleep. Varied quality in the encounter with the staff. The majority of the parents felt that the staff treated them well but experienced a variation. 4 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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But it [the response] is extremely varied, well not how nice, but how good the response is. Because sometimes people can be very abrupt and ignorant and not explain anything, but the next time they can be very nice and warm, that’s how I see it. (IP2)
A good response was exemplified by the staff being involved, caring, helpful, empathetic, humble and respectful of the parent’s and child’s situation. A bad response was described as the opposite, such as when the parent had the feeling of being a burden because the staff were inflexible and showed signs of stress. Need for support. The parents expressed a need for support including help with relief and with practical arrangements, and opportunities for supportive counselling. When the parents arrived at the ward they needed to be able to quickly arrange practical things. Since the children could not be left on their own, the parents described a need to be relieved at some times during the hospital stay. However, the parents also described some contradictions in this situation; even when offered relief, they did not want to leave their children with staff in whom they had no confidence or whom they felt did not know the child well enough. The need for sleep was mentioned most frequently. The parents said that a good night’s sleep was crucial for their ability to take care of the child and made a great difference in how they handled the various problems that arose. Yet the opportunity for relief was described as nonexistent at night. The parents could be awake for several days and nights in a row. It was expected that we would be awake 24 hours and know exactly what was going on all the time. Very annoying! We never had a brake. This was the most debilitating. (IP3)
The parents felt they were expected to take responsibility for the daily care of the child, so they needed the conditions that allowed them to do this as conveniently as possible. Not having personal access to supplies or custom assistive devices was mentioned as something that complicated everyday life in the hospital and some therefore avoided performing care tasks such as showering the child. The parents also reported that they sometimes needed assistance with the child’s care but felt that the staff saw them as strong individuals who could handle just about anything. Nevertheless, the parents felt that their strength and stamina varied, and so there was a need for understanding, responsiveness and flexibility in the encounter between staff and parents to provide the necessary care and support. Security from meeting already known staff. The parents felt secure when encountering knowledgeable staff whom they already knew and who they felt had a greater understanding of the child and the child’s situation. They also felt secure when staff were able to handle difficult situations, providing information and care. . . . The times we’ve come in and it’s been great that’s when we see nurses that we know, or with whom everything works well, and who understands the child. And when the doctor who knows the child best is on duty and everything works. (IP5)
The parents whose children had a contact nurse and a dedicated attending physician described how they received good help from these staff to share knowledge with other staff about how to give the best care for the child. 5 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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Acting as the child’s ambassador The children were totally dependent on their parents, and so the parents described themselves as representatives of the child, or as those who spoke on behalf of and defended the child. Consequently they wanted the staff to listen to them and felt they should be involved in everything that happened in relation to the child. Wanting to be involved in the child’s care. The parents felt involvement when they were able to provide the child with the care they usually provided at home and when they were included in all decisions relating to the child. They wanted to be involved in issues such as choice of medications, what emergency procedures were needed and how best to carry out an examination. They wanted to be informed about the child’s condition and about current planning. And then that you get clearer information about what is planned for the rest of the time. Or even that nothing is planned at all. (IP6)
Since the hospital environment is usually perceived as difficult for the child, the parents wanted the time in the hospital to be as short and effective as possible. Coordination, information about scheduling and planning were mentioned as important elements of an effective hospitalization. Desire for sensitivity to parents’ knowledge. The parents described that they knew their children and understood their medical condition best. They wanted their knowledge to be used but described this as a balance between sharing their knowledge and not taking over the staff’s medical responsibility. The parents described how they often had to push the medical process forward when the staff had inadequate knowledge about the child’s specific circumstances. They felt their expertise was used to varying degrees; some staff seemed to experience the knowledge of the parents as a threat, whilst others took advantage of the knowledge. The parents felt they had to gradually learn the medical language and how medical staff wanted to have information presented to them. We’re the only parents who are forced to view our children completely objectively. Otherwise you never need to do that as a parent. We must be able to view the child, what the child can and can’t do, very objectively because obviously we’re the ones they ask. And then we must look truth in the eye and say, no, the child can’t do this, this isn’t working. We must learn to do this. And it took a while before we learned to talk this way because we had never been in a situation like that before, none of us. (IP3)
Ensuring that the child is treated well. All the parents felt that the most important aspect of the encounter with the staff were how the child was treated. Staff who had experience with children with disabilities, who saw the child as a person and communicated directly with the child, were particularly appreciated. The parents noted that staff needed to adapt their information in a way that their child could understand. . . . more knowledge is needed in communication, alternative communication methods, with these children so that they can also become involved. But, yes, using signs and pictures and things like that . . . (IP7)
In encounters with staff and in various treatment situations, the parents sometimes felt they needed to protect the child, for example, in relation to how the staff handled the equipment, how 6 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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they examined the child, or how medicine was given. The parents felt they had to stand their ground and speak up on behalf of the child’s best interests. Speaking up took a considerable amount of effort and energy, at a time when they were already tired.
Discussion The parents in this study felt that the staff lacked knowledge and understanding of the situation of the child and the parents. They wanted to feel secure and confident that the staff had the necessary skills, similar to experiences of parents whose children were temporarily ill and hospitalized on the paediatric ward (Hallstro¨m et al., 2002). Children with multiple disabilities have complex needs and their parents have considerable knowledge and usually provide advanced intensive care for their children in daily life (McCann et al., 2012). The parents were reluctant to seek care when they did not feel that skilled staff were available. It can thus be assumed that the need for security and confidence regarding staff skills is of even greater significance for these parents. Like the parents in the study by Hallstro¨m et al. (2002), the parents in our study felt that competent staff were those with knowledge and experience, who could provide proper medical and nursing care. Competent staff also treated children and parents with respect and treated the child as a person. The need for skilled staff was underscored in Avis and Reardon’s (2008) study. They argued, similar to our findings, for the importance of keeping the parents informed of the child’s condition as the parents need to feel in control. Meltzer et al. (2012) identified various ‘sleep disruptions’ of parents at hospitals, such as slamming in doors, uncomfortable beds and alarms. However, they did not report any findings, like ours, regarding lack of sleep due to perceiving staff as lacking knowledge and medical responsibility. The parents were sometimes at their child’s side around the clock for several days, without being asked if they needed any relief. Likewise, in previous studies focusing on parental involvement in hospital care, parents have reported lacking help from the staff to get a break from the child care (Ygge and Arnetz, 2004). Yet one major difference between parents of temporarily ill children and parents of children with multiple disabilities is that the latter usually cannot leave their children alone (Tadema and Vlaskamp, 2010). The parents described themselves as representatives of the child, that is, those who spoke on behalf of the child and defended the child. This was interpreted as being the childs’s ambassador. Graham et al. (2009) similarly described this role as being a bodyguard and Hallstro¨m et al. (2002) as overseers. Staff need to be aware of the responsibility felt by the parents. They also need to do whatever possible to relieve the burden of this responsibility (Lindblad et al., 2005). In the light of the findings regarding the balancing act between acting as a caregiver and being in need of care, Alsop-Shields’ (2002) nursing model can form a base for future nursing implication. The idea of this model is that parents and children are viewed together as one unit, and the health care providers form the second unit. The model describes five pillars that are necessary for the interaction between the parent–child unit and the staff unit to work – social acts and relationships, perception, communication, role and self-concept. Communication is considered the most important. Unless the two units have sufficient knowledge about each other, no care can be provided, no treatment administered and no behaviour changed. It means that in order to provide optimal care, the staff must actively seek knowledge about the child’s medical condition, whilst accepting help from the parents in terms of their knowledge and experience of the child. Furthermore, staff need to find out how parents want to participate in the care and ask whether they can make it easier for the parents to provide care 7 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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(Alsop-Shields, 2002). This is consistent with the parents’ desire stated in this study. On the other hand, Espezel and Canam (2003) believe that family-centred care is ideal that cannot be achieved in hospital setting, and according to Mattsson et al. (2013), there is a risk that the staff would get too involved in the parents and forget the child. Since the number of potential respondents was low, a consecutive sampling was used (Polit and Beck 2012). The selection was still varied in terms of age and sex of the parents as well as age, sex and diagnoses of the children. It is possible that a larger number of fathers and a larger number of parents with non-Nordic background could have contributed additional aspects of the results. There was awareness during the research process that the interviews could be influenced by a previous care relationship and the first author’s pre-understanding. Each step of the analysis was therefore discussed with the other authors, who did not have a care relationship with the parents and who were professionals in other fields.
Conclusion and recommendations When the child with medical complexity was in need of hospitalization, the parents felt that they were in a vulnerable position in which they walked a fine line between acting as a caregiver and being in need of care. We suggest that the nursing model created by Alsop-Shields (2002) may inspire the development of a unified and family-adapted approach in paediatric care. In paediatric wards, the internal roles relating to the family should be discussed, as should the needs related to ‘living’ at the hospital. We would also suggest possible improvements for the parents by different means, such as introducing knowledgeable contact persons, increased presence of staff who can relieve responsibility, giving opportunity to respite and helping to rearrange the environment, to fit the child’s needs. Together, this could lead to a better quality of care for both the parents and the children with medical complexities. Acknowledgements Special thanks are expressed to all the parents who participated in this study. We would also like to acknowledge Ingela Svanhammar and Maria Ekholm Takman for valuable administrative support. Conflict of interest The authors declared no conflicts of interest. Funding ¨ rebro County Council and with a The research was funded by the Research Committee at O scholarship grant for paediatric nurses from Procter & Gamble. References Alsop-Shields L (2002) The parent-staff interaction model of pediatric care. Journal of Pediatric Nursing 17: 442–449. Avis M and Reardon R (2008) Understanding the views of parents of children with special needs about the nursing care their child receives when in hospital: a qualitative study. Journal of Child Health Care 12: 7–17. Borgstro¨m E and Carlberg A (2010) Till Ma˚ngas Nytta [To the Benefit for Many]. Stockholm: Riksfo¨rbundet FUB [Swedish Disability Association]. 8 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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Cohen E, Kuo DZ, Agrawal R, et al. (2011) Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics 127: 529–538. Espezel HJE and Canam CJ (2003) Parent-nurse interactions: care of hospitalized children. Journal of Advanced Nursing 44: 34–41. Graham RJ, Pemstein DM and Curley MA (2009) Experiencing the pediatric intensive care unit: perspective from parents of children with severe antecedent disabilities. Critical Care Medicine 37: 2064–2070. Graneheim UH and Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24: 105–112. Hallstro¨m I, Runesson I and Elander G (2002) Observed parental needs during their child’s hospitalization. Journal of Pediatric Nursing 17: 140–148. Kvale S and Brinkmann S (eds) (2009) Interviews: Learning the Craft of Qualitative Research Interviewing. Los Angeles: Sage Publications. Lindblad BM, Rasmussen BH and Sandman PO (2005) Being invigorated in parenthood: parents’ experiences of being supported by professionals when having a disabled child. Journal of Pediatric Nursing 20: 288–297. Mattsson J, Forsner M, Castre´n M, et al. (2013) Caring for children in pediatric intensive care units: an observation study focusing on nurses’ concerns. Nursing Ethics 20: 528. McCann D, Bull R and Winzenberg T (2012) The daily patterns of time use for parents of children with complex needs: a systematic review. Journal of Child Health Care 16: 26–52. MacDonald H and Callery P (2008) Parenting children requiring complex care: a journey through time. Child: Care Health & Development 34: 207–213. Meltzer LJ, Davis KF and Mindell JA (2012) Patient and parent sleep in a children’s hospital. Pediatric Nursing 38: 64–71. Morse JM and Richards L (2002) Readme first for a user’s guide to qualitative methods. Thousand Oaks: Sage Publications. ¨ lund A-K, Westerberg B and Larsson C (eds) (2003) Det a¨r nu som Ra¨knas: Handbok i Medicinsk Omva˚rdO nad av Barn och Ungdomar med Sva˚ra Flerfunktionshinder [It Is Now that Matters: Handbook of Medical Care of Children and Adolescents With Severe and Multiple Disabilities]. Stockholm: Gothia. Polit DF and Beck CT (eds) (2012) Nursing Research: Generating and Assessing Evidence for Nursing Practice. Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins. Riksfo¨rbundet fo¨r Ro¨relsehindrade Barn och Unga RBU [The Swedish National Association for Disabled Children and Young People] (2012) Vad a¨r Flerfunktionshinder? [What’s Multiple Disabilities?] Available at: http://www.rbu.se/flerfunktionshinder (accessed 14 December 2012). Tadema AC and Vlaskamp C (2010) The time and effort in taking care for children with profound intellectual and multiple disabilities: a study on care load and support. British Journal of Learning Disabilities 38: 41–48. Warner HK (2000) Making the invisible, visible. Journal of Child Health Care 4: 123–126. Ygge BM and Arnetz JE (2004) A study of parental involvement in pediatric hospital care: implications for clinical practice. Journal of Pediatric Nursing 19: 217–223.
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Experiences of parenting a child with medical complexity in need of acute hospital care
Journal of Child Health Care 1–9 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1367493514551308 chc.sagepub.com
Monica Hagvall1,2, Margareta Ehnfors2 and Agneta Anderze´n-Carlsson2,3
Abstract Parents of children with medical complexity have described being responsible for providing advanced care for the child. When the child is acutely ill, they must rely on the health-care services during short or long periods of hospitalization. The purpose of this study was to describe parental experiences of caring for their child with medical complexity during hospitalization for acute deterioration, specifically focussing on parental needs and their experiences of the attitudes of staff. Data were gathered through individual interviews and analyzed using qualitative content analysis. The care period can be interpreted as a balancing act between acting as a caregiver and being in need of care. The parents needed skilled staff who could relieve them of medical responsibility, but they wanted to be involved in the care and in the decisions taken. They needed support, including relief, in order to meet their own needs and to be able to take care of their children. It was important that the child was treated with respect in order for the parent to trust the staff. An approach where staff view parents and children as a single unit, as recipients of care, would probably make the situation easier for these parents and children. Keywords Complex care, disability, qualitative approaches
Introduction Children with medical complexity comprise a diverse group. Each child has his or her own personality and circumstances as well as individual limitations. The group is therefore difficult to ¨ rebro University Hospital, O ¨ rebro, Sweden Department of Paediatric Care, O ¨ rebro University, O ¨ rebro, Sweden School of Health and Medical Sciences, O 3 ¨ rebro University Hospital, O ¨ rebro, Sweden Centre for Health Care Sciences, O 1 2
Corresponding author: ¨ rebro University Hospital, S-701 85 O ¨ rebro, Sweden. Monica Hagvall, O Email: [email protected]
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define (Cohen et al., 2011). For example, medical complexity may include extensive physical disabilities, developmental disabilities and visual or hearing impairments, as well as problems with nutrition, bowel and bladder function often in addition to autism, epilepsy, scoliosis and pain. ¨ lund et al., Concentration and perception difficulties are common, as are problems with sleep (O 2003; RBU, 2012). The common denominator for all children with medical complexity is ¨ lund et al., 2003; RBU, 2012). In Sweden, their great need for help and support in everyday life (O approximately 7000 children and adults suffer from medical complexity (Borgstro¨m and Carlberg, 2010). The number of children with medical complexity is rising (Graham et al., 2009; McCann et al., 2012). These children often need emergency care, which requires a knowledgeable staff, as acute illness further complicates their situation (Graham et al., 2009). Tadema and Vlaskamp (2010) found that the situation for parents of these children is usually highly complex; they coordinate health care for the child and help the child with personal care and daily activities. Parents in their study stated that lack of sleep, the child’s health problems and the physical and mental load are the most difficult in their everyday life, and these burdens increase when the child is ill. When contacting the health care system parents are often exhausted because of the increased needs related to the illness. In Swedish paediatric care, it is assumed that parents will remain at their children’s bedside throughout a hospitalization. However, parents may feel that the role they are expected to play during hospitalization is unclear, which led to increased stress and conflicts with the staff (Hallstro¨m et al., 2002). Parents have stated that better communication between staff and parents would clarify who was responsible for various aspects of health care (Avis and Reardon, 2008, Graham et al., 2009). To provide parents with the best possible support, it is important to understand their feelings about the situation (Warner, 2000). Currently, there is limited knowledge of the parents’ situation, as pointed out also by the Swedish disability association (Borgstro¨m and Carlberg, 2010). Thus the purpose of this study was to describe parental experiences of caring for their child with medical complexity during hospitalization for acute deterioration. The specific aim was to study parental needs and their experiences of the staff’s attitude.
Method A descriptive design was used. Qualitative methods are regarded as appropriate when the aim is to gain knowledge and understanding about an individual’s experience (Morse and Richards, 2002). In line with the design, data were gathered using semi-structured interviews (Kvale and Brinkman, 2009) that were analyzed using qualitative content analysis (Graneheim and Lundman, 2004).
Sample and data collection The inclusion criteria were being a parent of a child aged 0–18 years who had at least three disabilities, was registered at the Child and Youth Habilitation Centre and had previously been admitted to a paediatric ward at a university hospital in central Sweden for acute care for at least one day between October 2011 and May 2012. In addition, the parent had to have stayed on the ward along with the child. Parents of children whose disabilities were newly discovered were excluded. Parents of 18 children met the inclusion criteria and were sent letters informing them about the study. Nine parents chose to participate (seven mothers and two fathers aged 30–50 years, M ¼ 37 2 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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Table 1. Interview guide. Introductory question: Please, tell me about your experience of your most recent acute admission at the paediatric ward. Needs: Please, describe your needs during your most recent acute admission at the paediatric ward? Experience of attitude: How did you experience the attitude of the staff? Can their response be improved, and if so, how would you like to be met?
years) of which one had a non-Nordic background. Their children varied in age (2–13 years, M ¼ 8 years), and all lived at home with both parents. The children had diagnoses such as hydrocephalus, cerebral palsy, myelomeningocele, epilepsy or autism and had been admitted to the hospital ward for a couple of days to one month. Data were collected by the first author through digitally recorded individual interviews (Kvale and Brinkman, 2009), lasting 30–70 minutes. In line with the aim of the study, the interview guide covered questions regarding parental experiences from the child’s most recent acute admission to the paediatric ward (Table 1). Parents were asked follow-up questions based on their responses. Prior to the interviews, the participants signed an informed consent.
Data analysis Qualitative inductive content analysis was conducted based on the description by Graneheim and Lundman (2004). The interview transcripts were read thoroughly several times to obtain a sense of the whole, divided into meaning units, condensed, abstracted and labelled with a code. These were sorted into eight categories, which represent the manifest content. The latent content was formulated into two sub-themes and a unifying main theme.
Ethics Parents of a child with medical complexity are in a vulnerable situation and often in time pressure (MacDonald and Callery, 2008). Participation in a study like this may be a sacrifice for them. Nevertheless, from an ethical point of view, it is important not to exclude important groups of individuals in research (Polit and Beck, 2012), therefore, we found it crucial to ask the parents of their experience when accompanying their child with medical complexity at an acute admission. It was also regarded as important not to exclude parents who were not able to speak Swedish, therefore one interview was conducted with a certified interpreter. The participating parents expressed their desire to share their experiences and wanted to participate. The time and place for the interview were decided upon their preferences to facilitate for them as much as possible. We do not know why some declined participation, but it could have been due to time pressure or due to being afraid of criticizing the care their children repeatedly were in need of. Permission to conduct the study was obtained from the Regional Ethical Review Board in Uppsala, Sweden (reg. no.: 2011/487).
Results Although there is a double aim of the study – to describe parental needs and their experiences of the staff’s attitude – the main results were interpreted in one theme, that is, a balancing act between 3 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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acting as a caregiver and being in need of care, illustrating the vulnerable situation at the hospital, where the parents served as the child’s ambassador in various ways.
Being in a vulnerable parental situation The parents’ narratives revealed a sense of vulnerability. They were dependent on the health care system but perceived a lack of knowledge and understanding from the staff. They felt that they were left to fend for themselves, and the result was a feeling of insecurity. The parents expressed a need for support in their vulnerable situation. This could be met by assistance with relief, sensitivity to the personal needs of the parent and the opportunity for supportive counselling. When parents met knowledgeable staff whom they knew personally, they felt secure despite their vulnerable situation. Lack of knowledge and understanding among staff. The parents felt that the medical knowledge was uneven among the staff and sometimes inadequate. They lacked knowledge of the child’s various diagnoses, and disabilities wherefore the parents felt they had to assume greater responsibility in the medical field, and thus felt less secure in the hospital than at home. The staff sometimes acted in an uncertain way towards both the child and the parents. The parents experienced that the staff at times had difficulties to understand the child’s best or to deal with issues such as spasticity when drawing blood samples. There are actually quite a few nurses who said, in a somewhat irritated way, Oh my, you sure are getting tense, you’re going to have to relax now. And all I can think is, don’t you know anything about cerebral palsy? (IP1)
The parents also wanted the staff to show greater understanding of their own situation. They described how they often suffered from lack of sleep and how they wished staff would show some understanding of their consequent mood swings. And for our part, we’re wrecks all the time when you come right down to it. And I think it needs to be an understanding of that too. (IP2)
Sense of being left on their own. Several parents described that they felt they were left to manage on their own, with a great responsibility to observe and help the acutely ill child. They felt that the staff expected the parents to be independent since they had been admitted to the ward with the child on numerous occasions. Sometimes we don’t see much of the staff when we’ve been in the hospital for a long period. They seem to trust that we’ll see everything and take care of everything. And we have asked ourselves, yes, but what if we miss something? So sometimes we’ve had a bit too much responsibility. (IP3)
The parents felt even more insecure during the nights, and since they felt that the staff did not monitor the child adequately they found it difficult to relax and sleep. Varied quality in the encounter with the staff. The majority of the parents felt that the staff treated them well but experienced a variation. 4 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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But it [the response] is extremely varied, well not how nice, but how good the response is. Because sometimes people can be very abrupt and ignorant and not explain anything, but the next time they can be very nice and warm, that’s how I see it. (IP2)
A good response was exemplified by the staff being involved, caring, helpful, empathetic, humble and respectful of the parent’s and child’s situation. A bad response was described as the opposite, such as when the parent had the feeling of being a burden because the staff were inflexible and showed signs of stress. Need for support. The parents expressed a need for support including help with relief and with practical arrangements, and opportunities for supportive counselling. When the parents arrived at the ward they needed to be able to quickly arrange practical things. Since the children could not be left on their own, the parents described a need to be relieved at some times during the hospital stay. However, the parents also described some contradictions in this situation; even when offered relief, they did not want to leave their children with staff in whom they had no confidence or whom they felt did not know the child well enough. The need for sleep was mentioned most frequently. The parents said that a good night’s sleep was crucial for their ability to take care of the child and made a great difference in how they handled the various problems that arose. Yet the opportunity for relief was described as nonexistent at night. The parents could be awake for several days and nights in a row. It was expected that we would be awake 24 hours and know exactly what was going on all the time. Very annoying! We never had a brake. This was the most debilitating. (IP3)
The parents felt they were expected to take responsibility for the daily care of the child, so they needed the conditions that allowed them to do this as conveniently as possible. Not having personal access to supplies or custom assistive devices was mentioned as something that complicated everyday life in the hospital and some therefore avoided performing care tasks such as showering the child. The parents also reported that they sometimes needed assistance with the child’s care but felt that the staff saw them as strong individuals who could handle just about anything. Nevertheless, the parents felt that their strength and stamina varied, and so there was a need for understanding, responsiveness and flexibility in the encounter between staff and parents to provide the necessary care and support. Security from meeting already known staff. The parents felt secure when encountering knowledgeable staff whom they already knew and who they felt had a greater understanding of the child and the child’s situation. They also felt secure when staff were able to handle difficult situations, providing information and care. . . . The times we’ve come in and it’s been great that’s when we see nurses that we know, or with whom everything works well, and who understands the child. And when the doctor who knows the child best is on duty and everything works. (IP5)
The parents whose children had a contact nurse and a dedicated attending physician described how they received good help from these staff to share knowledge with other staff about how to give the best care for the child. 5 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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Acting as the child’s ambassador The children were totally dependent on their parents, and so the parents described themselves as representatives of the child, or as those who spoke on behalf of and defended the child. Consequently they wanted the staff to listen to them and felt they should be involved in everything that happened in relation to the child. Wanting to be involved in the child’s care. The parents felt involvement when they were able to provide the child with the care they usually provided at home and when they were included in all decisions relating to the child. They wanted to be involved in issues such as choice of medications, what emergency procedures were needed and how best to carry out an examination. They wanted to be informed about the child’s condition and about current planning. And then that you get clearer information about what is planned for the rest of the time. Or even that nothing is planned at all. (IP6)
Since the hospital environment is usually perceived as difficult for the child, the parents wanted the time in the hospital to be as short and effective as possible. Coordination, information about scheduling and planning were mentioned as important elements of an effective hospitalization. Desire for sensitivity to parents’ knowledge. The parents described that they knew their children and understood their medical condition best. They wanted their knowledge to be used but described this as a balance between sharing their knowledge and not taking over the staff’s medical responsibility. The parents described how they often had to push the medical process forward when the staff had inadequate knowledge about the child’s specific circumstances. They felt their expertise was used to varying degrees; some staff seemed to experience the knowledge of the parents as a threat, whilst others took advantage of the knowledge. The parents felt they had to gradually learn the medical language and how medical staff wanted to have information presented to them. We’re the only parents who are forced to view our children completely objectively. Otherwise you never need to do that as a parent. We must be able to view the child, what the child can and can’t do, very objectively because obviously we’re the ones they ask. And then we must look truth in the eye and say, no, the child can’t do this, this isn’t working. We must learn to do this. And it took a while before we learned to talk this way because we had never been in a situation like that before, none of us. (IP3)
Ensuring that the child is treated well. All the parents felt that the most important aspect of the encounter with the staff were how the child was treated. Staff who had experience with children with disabilities, who saw the child as a person and communicated directly with the child, were particularly appreciated. The parents noted that staff needed to adapt their information in a way that their child could understand. . . . more knowledge is needed in communication, alternative communication methods, with these children so that they can also become involved. But, yes, using signs and pictures and things like that . . . (IP7)
In encounters with staff and in various treatment situations, the parents sometimes felt they needed to protect the child, for example, in relation to how the staff handled the equipment, how 6 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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they examined the child, or how medicine was given. The parents felt they had to stand their ground and speak up on behalf of the child’s best interests. Speaking up took a considerable amount of effort and energy, at a time when they were already tired.
Discussion The parents in this study felt that the staff lacked knowledge and understanding of the situation of the child and the parents. They wanted to feel secure and confident that the staff had the necessary skills, similar to experiences of parents whose children were temporarily ill and hospitalized on the paediatric ward (Hallstro¨m et al., 2002). Children with multiple disabilities have complex needs and their parents have considerable knowledge and usually provide advanced intensive care for their children in daily life (McCann et al., 2012). The parents were reluctant to seek care when they did not feel that skilled staff were available. It can thus be assumed that the need for security and confidence regarding staff skills is of even greater significance for these parents. Like the parents in the study by Hallstro¨m et al. (2002), the parents in our study felt that competent staff were those with knowledge and experience, who could provide proper medical and nursing care. Competent staff also treated children and parents with respect and treated the child as a person. The need for skilled staff was underscored in Avis and Reardon’s (2008) study. They argued, similar to our findings, for the importance of keeping the parents informed of the child’s condition as the parents need to feel in control. Meltzer et al. (2012) identified various ‘sleep disruptions’ of parents at hospitals, such as slamming in doors, uncomfortable beds and alarms. However, they did not report any findings, like ours, regarding lack of sleep due to perceiving staff as lacking knowledge and medical responsibility. The parents were sometimes at their child’s side around the clock for several days, without being asked if they needed any relief. Likewise, in previous studies focusing on parental involvement in hospital care, parents have reported lacking help from the staff to get a break from the child care (Ygge and Arnetz, 2004). Yet one major difference between parents of temporarily ill children and parents of children with multiple disabilities is that the latter usually cannot leave their children alone (Tadema and Vlaskamp, 2010). The parents described themselves as representatives of the child, that is, those who spoke on behalf of the child and defended the child. This was interpreted as being the childs’s ambassador. Graham et al. (2009) similarly described this role as being a bodyguard and Hallstro¨m et al. (2002) as overseers. Staff need to be aware of the responsibility felt by the parents. They also need to do whatever possible to relieve the burden of this responsibility (Lindblad et al., 2005). In the light of the findings regarding the balancing act between acting as a caregiver and being in need of care, Alsop-Shields’ (2002) nursing model can form a base for future nursing implication. The idea of this model is that parents and children are viewed together as one unit, and the health care providers form the second unit. The model describes five pillars that are necessary for the interaction between the parent–child unit and the staff unit to work – social acts and relationships, perception, communication, role and self-concept. Communication is considered the most important. Unless the two units have sufficient knowledge about each other, no care can be provided, no treatment administered and no behaviour changed. It means that in order to provide optimal care, the staff must actively seek knowledge about the child’s medical condition, whilst accepting help from the parents in terms of their knowledge and experience of the child. Furthermore, staff need to find out how parents want to participate in the care and ask whether they can make it easier for the parents to provide care 7 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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(Alsop-Shields, 2002). This is consistent with the parents’ desire stated in this study. On the other hand, Espezel and Canam (2003) believe that family-centred care is ideal that cannot be achieved in hospital setting, and according to Mattsson et al. (2013), there is a risk that the staff would get too involved in the parents and forget the child. Since the number of potential respondents was low, a consecutive sampling was used (Polit and Beck 2012). The selection was still varied in terms of age and sex of the parents as well as age, sex and diagnoses of the children. It is possible that a larger number of fathers and a larger number of parents with non-Nordic background could have contributed additional aspects of the results. There was awareness during the research process that the interviews could be influenced by a previous care relationship and the first author’s pre-understanding. Each step of the analysis was therefore discussed with the other authors, who did not have a care relationship with the parents and who were professionals in other fields.
Conclusion and recommendations When the child with medical complexity was in need of hospitalization, the parents felt that they were in a vulnerable position in which they walked a fine line between acting as a caregiver and being in need of care. We suggest that the nursing model created by Alsop-Shields (2002) may inspire the development of a unified and family-adapted approach in paediatric care. In paediatric wards, the internal roles relating to the family should be discussed, as should the needs related to ‘living’ at the hospital. We would also suggest possible improvements for the parents by different means, such as introducing knowledgeable contact persons, increased presence of staff who can relieve responsibility, giving opportunity to respite and helping to rearrange the environment, to fit the child’s needs. Together, this could lead to a better quality of care for both the parents and the children with medical complexities. Acknowledgements Special thanks are expressed to all the parents who participated in this study. We would also like to acknowledge Ingela Svanhammar and Maria Ekholm Takman for valuable administrative support. Conflict of interest The authors declared no conflicts of interest. Funding ¨ rebro County Council and with a The research was funded by the Research Committee at O scholarship grant for paediatric nurses from Procter & Gamble. References Alsop-Shields L (2002) The parent-staff interaction model of pediatric care. Journal of Pediatric Nursing 17: 442–449. Avis M and Reardon R (2008) Understanding the views of parents of children with special needs about the nursing care their child receives when in hospital: a qualitative study. Journal of Child Health Care 12: 7–17. Borgstro¨m E and Carlberg A (2010) Till Ma˚ngas Nytta [To the Benefit for Many]. Stockholm: Riksfo¨rbundet FUB [Swedish Disability Association]. 8 Downloaded from chc.sagepub.com at Kungl Tekniska Hogskolan / Royal Institute of Technology on November 13, 2015
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Cohen E, Kuo DZ, Agrawal R, et al. (2011) Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics 127: 529–538. Espezel HJE and Canam CJ (2003) Parent-nurse interactions: care of hospitalized children. Journal of Advanced Nursing 44: 34–41. Graham RJ, Pemstein DM and Curley MA (2009) Experiencing the pediatric intensive care unit: perspective from parents of children with severe antecedent disabilities. Critical Care Medicine 37: 2064–2070. Graneheim UH and Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24: 105–112. Hallstro¨m I, Runesson I and Elander G (2002) Observed parental needs during their child’s hospitalization. Journal of Pediatric Nursing 17: 140–148. Kvale S and Brinkmann S (eds) (2009) Interviews: Learning the Craft of Qualitative Research Interviewing. Los Angeles: Sage Publications. Lindblad BM, Rasmussen BH and Sandman PO (2005) Being invigorated in parenthood: parents’ experiences of being supported by professionals when having a disabled child. Journal of Pediatric Nursing 20: 288–297. Mattsson J, Forsner M, Castre´n M, et al. (2013) Caring for children in pediatric intensive care units: an observation study focusing on nurses’ concerns. Nursing Ethics 20: 528. McCann D, Bull R and Winzenberg T (2012) The daily patterns of time use for parents of children with complex needs: a systematic review. Journal of Child Health Care 16: 26–52. MacDonald H and Callery P (2008) Parenting children requiring complex care: a journey through time. Child: Care Health & Development 34: 207–213. Meltzer LJ, Davis KF and Mindell JA (2012) Patient and parent sleep in a children’s hospital. Pediatric Nursing 38: 64–71. Morse JM and Richards L (2002) Readme first for a user’s guide to qualitative methods. Thousand Oaks: Sage Publications. ¨ lund A-K, Westerberg B and Larsson C (eds) (2003) Det a¨r nu som Ra¨knas: Handbok i Medicinsk Omva˚rdO nad av Barn och Ungdomar med Sva˚ra Flerfunktionshinder [It Is Now that Matters: Handbook of Medical Care of Children and Adolescents With Severe and Multiple Disabilities]. Stockholm: Gothia. Polit DF and Beck CT (eds) (2012) Nursing Research: Generating and Assessing Evidence for Nursing Practice. Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins. Riksfo¨rbundet fo¨r Ro¨relsehindrade Barn och Unga RBU [The Swedish National Association for Disabled Children and Young People] (2012) Vad a¨r Flerfunktionshinder? [What’s Multiple Disabilities?] Available at: http://www.rbu.se/flerfunktionshinder (accessed 14 December 2012). Tadema AC and Vlaskamp C (2010) The time and effort in taking care for children with profound intellectual and multiple disabilities: a study on care load and support. British Journal of Learning Disabilities 38: 41–48. Warner HK (2000) Making the invisible, visible. Journal of Child Health Care 4: 123–126. Ygge BM and Arnetz JE (2004) A study of parental involvement in pediatric hospital care: implications for clinical practice. Journal of Pediatric Nursing 19: 217–223.
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