Pediatric Nurses' Perspectives on the Needs of Supporting Parents with Critically Or Chronically Ill Ch

Home , Meet the Parents

Health promotion work: Pediatric nurses’ perspectives on the needs of supporting parents with critically or chronically ill children

A qualitative interview study in Sweden

Carolina Karlsson

Scientific work II Main field of study: Public health science Credits: 15 hp Semester/Year: Spring term 2020 Supervisor: Miek Jong Examiner: Katja Gillander Gådin Course code/registration number: FH020A Degree programme: Master Programme in Public Health Science, 120 credits

Table of content Background ...... 1 Aim ...... 5 Materials and methods ...... 5 Design...... 5 Participants and procedure ...... 5 Data collection ...... 6 Data analysis ...... 6 Ethical considerations...... 8 Pre understanding ...... 8 Results ...... 8 Nurses perspectives on the prerequisites for parent’s health...... 9 Health inequalities ...... 9 The support that parents receive from society ...... 10 Psychosocial support ...... 10 The way parents need support ...... 11 Social support ...... 11 Supportive environments ...... 12 Economic support ...... 14 Discussion ...... 15 Result discussion ...... 15 Methoddiscussion ...... 19 Conclusions ...... 21 References ...... 22 Appendices ...... 27 Appendices 1. Information letter ...... 27 Appendices 2. Interview guide...... 28

Abstract

Background: Parents of critically or chronically ill children are a vulnerable group for mental illness. In order to prevent mental illness and to improve their health, we need to know what support these parents need. Nurses have good knowledge of the child's illness situation, they regularly meet the parents, and therefore may know how to best support these families. Aim: The aim with this study is to explore pediatric nurses` perspectives on the needs of supporting parents with critically or chronically ill children. Method: A qualitative study are performed with eight informants selected from a strategic choice. Data from the semi-structured interviews is analysed using a manifest qualitative content analysis. Results: The nurses perceive that these parents have poorer conditions than other parents to achieve good health. They are in clear need of more support such as supportive environments, psychosocial support, social and economic support. From a public health perspective, a coordinated work to build structures to strengthen these arenas favors many, not only at the individual level, also at the community level. Conclusions: A coordinated support from the authorities is required to help parents deal with life with a critically or chronically ill child. More research would be needed that looks at this issue from a public health perspective.

Keywords: Community support, health inequalities, sense of coherence, social support, public health.

Abstrakt

Bakgrund: Föräldrar till kritiskt eller kroniskt sjuka barn är en utsatt grupp för mental ohälsa. För att förebygga mental ohälsa och förbättra deras hälsa måste vi veta vilket stöd dessa föräldrar behöver. Barnsjuksköterskor har god kunskap om barnets sjukdomssituation, de träffar regelbundet föräldrarna och kan därför veta hur man bäst kan stödja dessa familjer. Syfte: Syftet med denna studie är att undersöka barnsjuksköterskors perspektiv på behovet av stöd till föräldrar med kritiskt eller kroniskt sjuka barn. Metod: En kvalitativ studie genomfördes med åtta informanter utvalda från ett strategiskt val. Data från semistrukturerade intervjuer analyserades med en kvalitativ innehållsanalys. Resultat: Sjuksköterskorna uppfattade att dessa föräldrar har sämre förhållanden än andra föräldrar för att uppnå en god hälsa. Det är tydligt att de behöver mer stöd som stödjande miljöer, psykosocialt stöd, socialt och ekonomiskt stöd. Ur ett folkhälsoperspektiv behövs ett samordnat arbete för att bygga strukturer för att stärka dessa arenor, det skulle gynna många på individnivå och på samhällsnivå. Slutsatser: Ett samordnat stöd från myndigheterna krävs för att hjälpa föräldrar att hantera livet med ett kritiskt eller kroniskt sjukt barn. Mer forskning behövs som tittar på denna fråga ur ett folkhälsoperspektiv.

Nyckelord: Folkhälsa, känsla av sammanhang, ojämlikhet i hälsa, samhällsstöd, socialt stöd.

Background The World Health Organization (WHO) anticipates that mental health will account for the largest burden of disease in the world by 2030 (Public Health Authority, 2019). In Sweden one out of two people is affected by some form of mental illness at some point in their life (Public Health Authority, 2019). The Swedish government has decided on a strategy for the state's efforts in the area of mental health 2016-2020 (Public Health Authority, 2019). The strategy focuses on five areas: 1) Prevention and promotion efforts 2) Early and available efforts 3) vulnerable groups 4) Participation and rights 5) Organization and leadership. Within this strategy, special attention is given to those that have an increased risk of mental illness (Public Health Authority, 2019). Several studies have shown that having a critically or chronically ill or disabled child has a huge effect on parents’ mental health (Muscara et al, 2018., Gudmundsdóttir, Gudmundsdóttir & Elklit., 2006; Oers, Haverman, Limperg, Dijk-Lokkart, Maurice-Stam & Grootenhuis, 2014; Stremler, Haddad, Pullenayegum & Parshuram, 2017).

The Swedish Social Insurance Agency’s definition of a critically ill child is, “A child is considered critically ill when there is a distinct connection to a life-threatening condition, receives treatment for the illness and the child´s life is in jeopardy without this treatment” (Swedish Social Insurance Agency, 2020).

According to recent numbers of the Swedish social authority Försäkringskassan, in 2019 more than 5000 families with critically ill children received granted compensation for care (A, Kolk. personal communication, 6 mars 2020).

Parents of critically chronically or ill children, children with disabilities and children with life-threatening injuries have a reduced quality of life (QoL) (Vonneilich, Lüdecke & Kofahl, 2016), more stress, hopelessness (Lawoko & Soares, 2002), depression, anxiety, sleep deprivation (McCann, 2008) and post-traumatic stress disorder (PTSD) (Gudmundsdóttir et al., 2006 & Muscara et al., 2015).

Furthermore, it has been reported that these parents have fewer social contacts, a higher financial burden and higher help-needs in the household compared to parents without critically or chronically ill children (Vonneilich, Lüdecke & Kofahl, 2016).

Parents of chronically ill children, mothers in particular, are at higher risk to be disadvantaged in society probably due to the challenge of combining child care with work and leisure time. Parents of chronically ill children works fewer hours a week, mothers less often participate in the labour force, and parents spend less time doing leisure activities like physical activity than parents of healthy children (Hatzmann, Peak, Heymans, Maurice-Stam & Grootenhuis, 2014 & Brandon, 2007).

Another study describes that parents of children with rare diagnoses are more vulnerable and socially isolated. They are often managing a lack of coordination of care between providers and services caring for their children, and a gap in accessibility to government support. Due to fragmented care, parents must fill these gaps by juggling multiple roles such as advocate, case manager and medical navigator (Currie & Szabo, 2018 & and Ygge & Arnetz, 2004).

Vonneilich, Lüdecke & Kofahl (2016) analyses showed that having a chronically ill or disabled child is associated with poorer health-related QoL both in the physical and mental health dimensions across a variety of illnesses and disabilities of the affected child. They advocate that future interventions should focus on the whole family system and its social integration instead of just the affected ill child.

According to the Ottawa Declaration, health promotion is defined as, ” the process of enabling people to increase control over, and to improve, their health. To reach a state of complete physical, mental and social well-being, an individual or group must be able to identify and to realize aspirations, to satisfy needs, and to change or cope with the environment. Health is, therefore, seen as a resource for everyday life, not the objective of living. Health is a positive concept emphasizing social and personal resources, as well as physical capacities. Therefore, health promotion is not just the responsibility of the health sector, but goes beyond healthy life-styles to well-being” (World Health Organisation, 1986).

The national target for public health policy is “Creating societal conditions for good and equal health in the entire population and closing the impactable health gaps within a generation”. Public health is influenced by, among other things, the individual's choices and living habits, structural factors such as external environments and democratic rights. Good public health in Sweden and the development of health in the population are central to sustainable social development and to the well-being of people (Public Health Authority, 2020).

Leon, Wallenberg & Hollikers (2013) and Fishers (2002) results implicate that it is needed to develop knowledge and expertise in various

areas to assist these parents to reach optimal functioning given the inherent stressors of raising a chronically ill child.

Sense of coherence (SOC) by Antonovsky (1987) is considered as an adaptive dispositional orientation that enables coping with adverse experience. SOC has three main components, comprehensibility, manageability and meaningfulness. The more a person is able to understand and integrate (comprehensibility), to handle (manageability) and to make sense (meaningfulness) of an experience or disease, the greater the individual’s potential to successfully cope with the situation or the disease (Antonovsky, 1987). A strong SOC allows the parents to manage the stress of having a critically ill child while maintaining good health.

Critically and chronically ill children depend on health care and have continuous contact with healthcare professionals when growing up (Denis-Larocque, 2017 and Ygge & Arnetz, 2004). A profession that has close contact with these children and their families, and are highly involved in the child's care are pediatric nurses (Hagvall, Ehnfors & Anderzén-Carlsson 2016). To know how to best support these families with critically or chronically ill children more knowledge and insight in this area is needed (Colville et al. 2009).

To my understanding there is limited research around what support these parents needs to maintain good health. Therefore, the present study was initiated to examine pediatric nurses' experiences on the needs of support for these parents. The study focuses on community support for parents of children with critically or chronic illnesses.

Aim The aim of this study is to explore pediatric nurses` perspectives on the needs of supporting parents with critically or chronically ill children.

Specific research questions were: -What are the pediatric nurses’ perspectives of prerequisites for these parents’ health? -What support do the parents receive from society and what support do they need?

Materials and methods

Design A qualitative method was used with individual and semi-structured interviews. To analyse the data a qualitative content analysis was used with a deductive approach (Graneheim & Lundman, 2004). The method was selected from the study’s aim and to achieve a deeper understanding of the subject. To learn about the nurses' perspectives and experiences individual interviews was conducted.

Participants and procedure A deliberate selection was made. This means that the selection was made on the basis of the objective that the material should be able to illustrate the study's problem (Yin, 2013). The inclusions criteria were nurses of any age and gender working at pediatric clinics' pediatric care department, pediatric ward and neonatal ward in a medium-sized county in northern Sweden.

Data collection A request to participate in the study together with an information letter was sent to two pediatric clinics in January 2020. Managers of the pediatric departments, pediatric wards and neonatal word forwarded the information on the study to their staff nurses. All interested nurses received a single email with the information letter (see Appendix 1) and an invitation for a possible interview time. Consent to participate in the study took place by mail, and verbally before the interview began. Nurses at all departments, except for one, were allowed to participate in the study during their working hours.

Eight semi-structured interviews were conducted in January 2020. The interviews were recorded and conducted individually on the telephone and were between 30-50 minutes long. An interview guide was used in the interviews (see Appendix 2).

Out of the eight participants, seven were female and one male. The ages of participants ranged between 23-66 years old. Four participants were nurses and four participants were pediatric specialist nurses. The professional experience of nurses to work with children varied largely, ranging from 1-40 years.

Data analysis A deductive qualitative content analysis according to Graneheim & Lundman (2004) was performed. It was a manifest content analysis which means that the focus was on what the text says, the visible and obvious components. The interviews were transcribed, word for word and then the transcripts were read multiply times to get a complete picture of the context. The text was coded into condensed sentence- bearing units, were the core remains and then categories were created, see example in Table 1.

Table 1. Examples of the analysis process. Meaning units Condensed unit Code Category

“I think it is More exposed to Poor health Health incredibly several factors physically and inequalities stressful and worse mentally especially conditions for psychologically good health both but it also gets physically and physical considering that mentally they get much less sleep and are lying and worried and it is an incredibly tough period in life so I definitely think it affects them significantly more than parents with healthy children ”.

“it's a huge trauma, it's parents who haven't slept a single full night since the child was diagnosed, they can be sad or tired or stressed or never have a free time because they have no relief and you have to have relief, so it is, after all a incredible mental strain”.

Ethical considerations The study did not need to be approved by an ethical committee because it was carried out as part of a student’s master thesis with no aim to publish the data in a scientific journal. Furthermore, the study did not involve patients nor risked harming any individual physically nor psychologically, nor does it use a personal register. The study was performed in line with the Helsinki declaration (World Medical Association Declaration of Helsinki, 2013). Ethical aspects such as the information requirement, the consent principle, the use requirement and the confidentiality requirement have been taken into account in the study (Bryman, 2018). The participants are completely anonymously presented. The participants are numbered in the text as participant 1 (P:1), (P:2), and so on. All material like notes and recordings will be deleted after the study. Before the interviews were conducted, an information letter was sent out by email to all participants, see appendices 1. Each participant also gave an email consent to participate in the study.

Pre understanding The researcher in this study is a parent of a critically and chronically ill child, and therefore has understanding of the subject and has relevant experience with needs for support. Although this preunderstanding might have affected the data analysis and interpretation, the researcher has tried to examine the data in an open and objective manner, without taking into account predefined concepts or opinions.

Results The aim with this study is to explore pediatric nurses´ perspectives on the needs of supporting parents with critically or chronically ill children. The nurses experienced that the support that the parents need varies based on the family's situation and the child's medical condition. But

common to all is that they clearly need more support and that a better community structure is needed to support these vulnerable families.

The results are divided according to the study's questions and the five categories that emerged during the analysis, health inequalities, psychosocial support, social support, supportive environments and economic support. The category health inequalities are related to the domain “ What are the pediatric nurses’ perspectives of prerequisites for these parents’ health?”. And the categories psychosocial support, social support, supportive environments and economic support are related to the domain “What support receive the parents from society and what support do they need?”.

Nurses perspectives on the prerequisites for parent’s health. Health inequalities P:3.” These parents are very worried, sleep poorly when they have to be up and look at the child, I think they are and live under a much higher stress compared to aa someone who does not have a sick child. Eeh stress level is high and they have to be like, think about this with the disease constantly”.

The pediatric nurses´ perceives these parents have poorer conditions than other parents to achieve good health. The experience was that parents with critically ill children have significantly worse health than parents of healthy children. Both the mental and physical health are adversely affected. The poorer quality of the social network the parents have, the worse their health is experienced both physically and mentally. The nurses also experienced differences in the health of parents who have a temporarily critically ill child and a long-term or chronically ill child. The longer the child is ill or cared for in hospital, the worse the health of the parents in the long term.

The nurses described that everyone who gets a critically ill child initially ends up in a shock phase. Then a crisis, the whole family's life is turned upside down and they are exposed to tough conditions with fear, worry and stress. Most people cannot work because they have to take care of the sick child, which further increases the stress for the economy and how they should make their everyday life work. They get too little sleep and have difficulty maintaining routines that maintain their health and well-being. For example, there is little time to exercise, or eat regularly and cook healthy foods. These parents are often confined to hospitals for long periods of time, and it is not possible to plan the days when the child's medical procedures often occur unplanned. It becomes extremely difficult for the parents to live a normal life with a functioning everyday life. This is the main reason why they also have significantly worse health health according to the nurses. Several nurses mentioned that there is a risk of stigma and that the parents' environment, including society, does not understand the need for support and the life situation these parents live in.

The support that parents receive from society Psychosocial support P:8 “A contact with the social worker is very important, to talk to someone who is not necessarily involved”.

Common to many of the interviews was that the nurses were not aware that parents receive much support from the community while they are in the hospital. A few mention patient organisations and parent groups on Facebook. The support, which according to the nurses today is given to the parents mostly psychosocial support. That is contact with a social worker which is offered at the hospital, as well as support from the

healthcare staff working in the wards. The psychosocial support is perceived by the nurses as a very important support for these parents. However, many nurses felt that the support can be improved by giving all departments a social worker and psychologists who are available at that particular department and do not have to be shared between several departments. P:6 ” We have one social worker but she is not always available and is not here on saturday and sundays, holidays or evenings”.

It was felt that the accessibility and flexibility of the support from the social worker today is inadequate. There is a hospital priest at all hospitals and more nurses claim that the priest could be used more than it does today and could very well be a complement to the social worker.

The support for the parents looks a little different depending on the child's disease diagnosis. Some illness diagnoses, such as cancer and diabetes, are followed by more support and more organizations supporting parents, while other diagnoses can easily be forgotten.

The way parents need support P: 4 “In Sweden it is parents that do most of the child’s hospital care, they have to be with the child around the clock. Support from the authorities is also needed. They need support to get assistance, you need support to get parental benefit, you need support to understand as well as how the insurance fund works, then the social worker usually help with papers from the doctors for example. They need that kind of support too”.

Social support P:4. “If the parents have good social support, i feel that they generally

handle it better…. even though the child is critically ill because they have support and support all around them”.

The most important support that emerges in the interviews is the social support. Some parents have strong support from families, friends and workplaces, and this is considered crucial to parental health. But, unfortunately, there are parents that lack social support. The nurses felt that this is a huge problem, and that these parents are in great need of support and relief in order to maintain good health and maintain good living habits. The nurses experience is that it will be incredibly tough for those parents who lacks social support. Parents who for example have several children are dependent on someone else being able to take care of the healthy children in order to be able to be with the sick child. Today, there is no support from the community for siblings to sick children. The nurses described the importance of social support because parents in Sweden are obliged to participate in the child's care at the hospital around the clock. To have social support can work as a relief for the parents, that they can take a walk outdoors, go home and shower or go and eat food together. The nurses also mentioned that the social support is important in general and it helps the parents to feel that their situation is understandable.

Supportive environments P:2. “There is much else we could do and the environments in the hospital there could be a lot done to help make it not so tough .. ee .. but we are not there yet, that it there will be accessibility tariff much more things that solve it practically for the parents ".

The nurses experiencing a great need for supportive environments for these parents. They feel that there are shortcomings in the accessibility of

the parents, for example get something to eat or somewhere to rest with the siblings.

P:4. “Much more practical could be solved, for example in larger cities where you have Ronald McDonald1, we have just at long distances it can be 6 miles that families need to travel every day, it is not possible that there should be such with us also opportunities that they have in the big city ”.

Many parents have a long way to drive to the hospital, it is difficult to be with the rest of the family because of tight spaces and nowhere to be during the day or sleep overnight. According to several nurses, the need for a patient hotel near the hospital where the sick child's family can live, play, rest, eat, exercise and be within safe distance from the hospital's children's wards is big. Several nurses mentioned Ronald McDonald as a good example for what the families need. The Ronald McDonald children´s fund is a fundraiser with the purpose of supporting families with sick children. They build Ronald McDonald house, were families with critically ill children can live while the sick child is being cared for at the hospital next door. A hospital environment is not optimal for neither the children's recovery and health nor that of the parents, so this is considered to be able to reduce suffering and prevent ill health in the whole family due to the nurses.

There is a constant stress on the parents who are torn between the sick child and the other family when they cannot live together. A patient hotel near the hospital where the parents can stay with the family and the sick

1 Through the Ronald McDonald Children's Foundation, Ronald McDonald House provides housing for relatives of severely ill children. The houses are located adjacent to children's hospitals where the children should be able to live with their families during the treatment period.

child and where there are conditions to maintain good living habits would improve parental health.

P:3. “I think they should invest more home health care in the home, we hardly have anything like that here for the children”.

Several of the nurses emphasize the importance of introducing a larger and better home health care for the children. They believe that the health of both children and parents would be improved if there were more opportunities for home health care in the county. To spend as little time as possible in the hospital and more in the home increases the health of the parents according to the nurses.

Several nurses talk about the need for available teachers at the hospital. This is so that siblings of critically ill children can be together with the family despite the Swedish school duty.

Economic support P:4. "It is not enough that you have a very critically ill child, you also do not have an economy that makes you survive and that, it is a disaster, where you could wish it looked different".

Many of the nurses feel that the parents often suffer from not receiving the economic support they need or are entitled to regards from Swedish social authority Försäkringskassan and their home county. Almost all parents have to fight to get their rights through and fight for help with their children in an already tough situation where there is really no time, energy or legal knowledge. The county’s and the social authority have their own rules and do not have the same approach as the health care regions. There is no collaboration and consensus on these patients and

their everyday lives. The health care can write an assessment of what the child and the family need for support and help, but then the county or the social authority makes their own assessment that contradicts the health care which causes the parents to get stuck.

P:7. "That they should know that they are receiving support and help from the community, but there it is lacking."

The nurses experience is that there are obstacles due to the social structure in which the parents often find themselves struggling with authorities, they have to fight for their rights all by themselves. One of the nurses who also works in the neonatal department describes that the state is prepared to invest so much resources and money in the early life stage to save, for example, premature babies. But when they then suffer from complications based on the early birth such as concentration difficulties etc then you are not at all prepared to spend money to help these children in school etc where needed, which creates public health problems in the long run. One common denominator for all the parents with critically ill children is that they all need help and support in everyday life in various forms. Some parents may be needing help with the siblings at home, financial help to be able to care for the sick child at the hospital or assistance at home.

Discussion

Result discussion The pediatric nurses` that participated in the present study appeared to have quite similar perspectives on the needs of supporting parents with critically or chronically ill children. The nurses experience that the parents need support because they face many challenges such as, poor health, ﬁnancial and time pressures, concerns over the well-being of the

child, anxieties over lifelong care, social reaction and stigma. The nurses perceive that this group of parents are a specific vulnerable group to develop health problems, which shows health inequalities in these group. This is in line with previous research demonstrating that shows that having a critically ill child has a huge negative effect on parents’ mental health. These parents have a reduces quality of life, and to a greater extent suffer from more stress, depression, anxiety, fatigue and PTSD (Anclair et al, 2017; Fauman et al., 2011; Oers et al., 2014; Stremler et al, 2017; Terp, Sjöström-Strand, 2017 & Vonneilich, Lüdecke & Kofahl, 2016).

Anderson, Elliott & Zurynski (2013) study suggests that support groups and psychological support for the family should be routinely offered at the time of the diagnosis, to improve the family’s health.

The result has been linked to Antonovskys model a sense of coherence (SOC), which is central to successfully coping with challenges. When you have a good sense of coherence, you see the world as something that is manageable, understandable, and meaningful (Antonovsky, 1987).

Antonovsky deems that a strong SOC allows you to manage stress and life crises while maintaining good health. Antonovsky (1987) also believes that it is not the life events, like having a critically ill child, themselves that affect health but how the individual manages them and what resources the individual has. Bergh & Björks (2012) study indicates that when a child is diagnosed with cancer parents’ SOC scores change over time and decreases.

Society can assure the conditions for these parents to be healthy. Through targeted health promotion actions in the community, the parents' SOC

could be strengthened and thus improve their health and well-being. For example, the nurses experience a need of supportive environments in the form of the need for a patient hotel like Ronald McDonald house (RMH) that was mentioned in several interviews. This because of the long distance that many parents have to the hospital. Yantzi et al. (2001) study shows that distances to hospitals are associated with negative effects on the family.

By offering a patient hotel near the hospital, it is possible to potentially increase the chances of raising parents' SOC by improving their manageability. To get a high manageability, the parents must feel that there are resources at their disposal. Franck, Gay & Rubins (2013) study shows that when a family can stay together in facilitated by accommodations such as RMH it provides important benefits in terms of family experience, psychosocial well-being, and perceptions of child recovery.

Many of the nurses felt that the parents often suffer from not receiving the economic support they need or are entitled to. And that they have to struggle to get the help and economic support they need from society. This is also described by Currie & Szabo (2018) who describe significant gaps within medical and social care supports for children and the family. This is a shortcoming that could be made better from a salutogenetic perspective through a developed collaboration between the authorities. It's hard for parents to make the situation understandable and meaningful while they try to navigate multiply authorities and ineffective systems. Currie & Szabo, (2018) describe that it makes the parents feel a sense of hopelessness, anger and frustration.

To promote a high score in comprehensibility and meaningfulness the parent’s also need a good social support. The most important support that

emerges in the interviews was the social support which is in line with Jackson et al. (2009). Some parents don’t have social support and the nurses felt that this was a huge problem for these parents’ health. McGraths (2001) study suggest a support system which include the provision of practical assistance through appropriately trained volunteers and development of parent support groups. Such support strategies involve sensitivity to particularly vulnerable families who have limited support available. Kerr & McIntosh (2000) suggests parent‐to‐parent support because their study shows that parents of children with special needs are uniquely qualified to help each other. Studies by Dahan et al., (2020) and Bourque, Dahan, Mantha, Robson, Reichherzer & Janvier, (2018) also show the benefits of parent‐to‐parent support.

Jackson et al. (2018) have identified coping strategies, such as coping- focused psychological support throughout the parents' and children's journey would improve the parent’s health. This is also in line with the nurses’ experience in this study that the psychosocial support that the social worker offers is very important to the parents.

There are no reliable sources for how many parents in Sweden that have a critically or chronically ill child. Swedish Social Insurance Agency granted more than 5000 family’s compensation for care in 2019 (A, Kolk. personal communication, 6 mars 2020). In the interviews, it appears that there are many parents of critically ill children who do not meet Swedish Social Insurance Agency definition or get approved for their compensations. Many children do not meet the requirements, so the parents do not even try to seek compensation.

This means that there is likely to be a significant hidden figure with parents of critically ill children in need of support.

We cannot make all children healthy, health care cannot solve all problems for families with critically ill children, but we as a community can together help these families to a better everyday life a better quality of life, through a supportive environment and supportive social resources we can provide these children and families an understandable manageable and meaningful everyday life. Promoting health by avoiding stress is not enough, according to Antonovsky, “it is not enough to pave the way for life streams so that people do not fall into or jump in the water. You also have to teach them to swim, manage their lives in hardship and adversity, make the most of life”. (Antonovsky, 1987:9).

An Australian study suggests that families living with rare disease would benefit from an overarching national organisation to coordinate advocacy for rare disease strategy and policy to improve access to health care and financial and community support (Anderson, Elliott & Zurynski, 2013).

This study is important because it creates an understanding of the needs of support for the parents and is referring to the pediatric nurses' experiences. It also highlights several obstacles due to the social structure in which the parents often find themselves struggling with authorities.

The pediatric nurses in the study sees the importance of health promotion and prevention for these group of parents to improve their health and the well-being of the whole family. From a public health perspective, a coordinated work to build structures to strengthen these arenas favors many, not only at the individual level, also at the community level.

Methoddiscussion

To describe the trustworthiness of the study, the terms credibility, dependability and transferability are used (Graneheim & Lundman, 2004)

and the trustworthiness of the study is estimated as high on the basis of these aspects. The credibility is considered to be high as the method corresponds well with the purpose of the study and the selection is made on the basis of being able to answer the questions, which has been achieved. The method was chosen within the framework of university guidelines and was considered most suitable based on the time frame and resources available. The credibility was also increased by presenting direct quotes of the informants and explanations of the analysis process.

The dependability of the study is considered to be good, transcription and analysis have been implemented on a short period of time. This means that the purpose of the study was clear and limited and all interviews were based on the same questions. Since the interviews were recorded, the analysis is of a higher quality as the researcher knows exactly what the informant has said, this is important in a manifest content analysis, the researcher has then easier to concentrate on what is solely expressed in the text and to avoid own interpretations, as Graneheim & Lundman (2004) expressed “let the text talk”, the without impute meanings that is not there.

To increase the quality of the study, it would have been valuable if the interview material was read by another person who then also analysed the material. The researchers would then have been able to process the analysis together and see if they came to the same conclusion. The text has been interpreted from a public health science perspective, and it probably would have looked different with a different, for example, medical perspective during the analysis. There is always a risk that the researcher with her preunderstanding may have an indirect impact on the results of the study. The researcher is aware of this and has tried to examine the data in an open and objective manner.

The approach of this study is clear and well-documented and is by design easily repeated with other settings or groups, which increases the transferability. Because the study is conducted in a county with smaller hospitals, the result may be different if the study was carried out in larger hospitals or university hospitals.

Conclusions The group of parents of critically or chronically ill children is an extra vulnerable group that has more difficult to achieve a good health, which shows health inequalities in these group. In order to accomplish good public health on equal terms, a coordinated work to build structures in society to support these parents is needed. A coordinated support from the authorities is also required to help parents deal with life with a critically ill child.

Suggestions for future research is to interview parents of critically or chronically ill children about their experience and need of support. To get an overview of how extensive the problem is and how many families that are in need of support, research on the extent of the problem in Sweden would be needed.

Much of the research in this area is done from a nursing or psychological perspective, more research that looks at the issue from a public health perspective would be essential. By viewing the parents' situation from a public health perspective and introducing efforts thereafter, we can support the parents so that they do not have to become tomorrow's patients. Health inequities for these parents could be reduced by the right mix of government policies.

References Anclair, M. (2017). Fears, stress and burnout in parents of children with chronic conditions: Treatment with cognitive behavioral therapy and mindfulness. (Doktorsavhandling, Karlstads universitet, Pedagogiska institutionen).

Anderson, M., Elliott, E., & Zurynski, Y. (2013). Australian families living with rare disease: Experiences of diagnosis, health services use and needs for psychosocial support. Orphanet Journal of Rare Diseases, 8(1), 22.

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Appendices

Appendices 1. Information letter Hej. Jag heter Carolina och läser masterprogrammet i hälsovetenskap med inriktning folkhälsovetenskap vid Mittuniversitetet. Under våren 2020 ska jag skriva mitt examensarbete. Syftet är att undersöka hur vårdpersonal på barnkliniker upplever på stödet till föräldrar med allvarligt och/eller kroniskt sjuka barn. Att få ett allvarligt sjukt barn innebär ofta en stor kris/trauma för bägge föräldrarna och deras respektive familjer. Kunskapen om hälsan hos föräldrar till allvarligt sjuka barn pekar på att sjukvården kan ha en viktig roll i det stödjande och förebyggande arbetet. Jag hoppas att studien kan bidra till att fördjupa förståelsen kring vad för slags stöd föräldrar till allvarligt sjuka barn behöver. Detta för att kunna främja hälsan hos föräldrarna och på sikt även barnens hälsa. Studien är kvalitativ, vilket innebär muntliga intervjuer med cirka 8 deltagare. Intervjuerna kommer att ske enskilt via telefon och beräknas ta cirka 30 min. Det är endast jag som intervjuar och arbetar med intervjumaterialet. Intervjuerna kommer att spelas in om du godkänner det. Detta då det blir lättare att göra en analys av resultatet på ett neutralt sätt. Inspelningarna kommer efter studien avslutats att raderas. Intervjuerna kommer att ske under januari-februari 2020. Du som deltar i studien kommer att vara anonym i examensarbetet, det kommer inte att framgå vilka de intervjuade är. Inga uppgifter som riskerar att avslöja identiteten på dig kommer att presenteras i studien. Ditt deltagande i studien är helt frivilligt och du kan när som helst avbryta ditt deltagande utan närmare anledning. Om du vill delta i studien maila mig så bokar vi in en tid för telefonintervjun.

Har du några frågor kontakta mig: Carolina Karlsson [email protected]

Eller min handledare: Miek Jong Universitetslektor [email protected]

Appendices 2. Interview guide.

Intervjuguide Datum och tid för intervjun Tema 1, Bakgrundsinformation. - Ort där organisationen bedrivs, arbetsplats. - Kön - Ålder - Yrkestitel på deltagare - Vad har du för utbildning? - Hur lång yrkeserfarenhet har du av barn? Tema 2, Uppfattningar om stöd till föräldrar med allvarligt sjuka barn. Inledande fråga: - Vill du kortfattat beskriva ditt arbete med allvarligt sjuka barn? Huvudfrågor: - Hur upplever du föräldrarnas förutsättningar till hälsa? - På vilket sätt behöver dessa föräldrarna stöd? - Vilket stöd får dessa föräldrar idag? (Av er på barnkliniken och andra aktörer som du känner till) - Vilka möjligheter och hinder anser du att det finns inom din yrkesroll? Avslutande fråga: - Är det något mer som du vill tillägga på detta tema?

Följdfrågor: Kan du ge ett exempel? Vill du berätta mer? Hur menar du?