Living as a family with a child on home mechanical ventilation and personal care assistants—A burdensome impact on family life

Over the last few decades, longterm life support technologies such as ventilators keep children with chronic respiratory insufficiency alive and have become a wellestablished treatment in many Western countries (Carnevale et al., 2008). More respiratoryill children, for example, children with neuromuscular diseases, can get lifesustaining treatment at home because of advances in neonatal and paediatric care, technological advances and development of suitable home equipment (Cancelinha et al., 2015). Children dependent on invasively or noninvasively ventilation, receive the treatment in a home setting, called home mechanical ventilation (HMV), where personal care assistants (PCAs) provide surveillance (Lindahl & Kirk, 2019). The change in care from hospital to a homebased setting reduces hospital admissions; however, it also requires advanced home care programme (Carnevale et al., 2006; Lewarski & Gay, 2007). Patient pathways with HMV are very demanding, complex and stressful for the families. Lewarski and Gay (2007) emphasize the need for an effective HMVmanagement programme to support transition from hospital to home, creating a safehome environment, and training of PCAs and followup. Research indicates that having HMV not only affects the ventilatordependent child, but also the family, because the technology, its complexity and parenting responsibilities are overwhelming (Carnevale et al., 2008). Families, both children, well siblings and parents are all affected emotionally, physically and socially, and experience reduced quality of life (QOL) (Anderson & Davis, 2011; González et al., 2017; Mesman et al., 2013). Emotionally, parents have concerns about their child's physical, emotional and social wellbeing (Carnevale et al., 2008), and they experience feelings of guilt, mood swings and fear caused by the daily threat of death (Flynn et al., 2013; Mesman et al., 2013). Physically, parents experience chronic fatigue and exhaustion (Carnevale et al., 2008). Socially, parents struggle with isolation and experience a range of having an impact of relationships with family and friends, and limited activities for the family (Flynn et al., 2013; Lindahl et al., 2011a; Mesman et al., 2013). Siblings to enduringill children also experience their lives being affected and they can feel neglected, ignored, isolated and lonely in the family if their parents spend less time with them versus the ill child. This can result in jealousy, disgust and conflicts and sibling rivalry (Alderfer et al., 2010; IsraelssonSkogsberg & Lindahl, 2017; Williams et al., 2009).

In a Scandinavian setting families are entitled to PCAs, both some hours during the day/night or continuously, which affects their family and everyday lives. The family home has to live up to hygiene and ergonomic requirements, which some families experience as resembling a public or hospital environment (Lindahl et al., 2011a).
Having PCAs in one's home around the clock means limited privacy, and battles for control can occur (Lindahl & Kirk, 2019). It is important for PCAs and their families to develop a professional and stable relationship because they enter a long-standing cooperation (Lindahl et al., 2011a). Families are dependent on help from PCAs, but on a different level due to the disease, however, PCAs bring vulnerability to families because they can come and go (Lindahl & Lindblad, 2013).
The financial cost for the families and social health care are also relevant matters, because pathways with HMV are very expensive for society and make up a great deal of the overall health expenses in most countries (González et al., 2017;Lindahl & Kirk, 2019).
Investigating the perspectives of parents and children on family life with HMV and PCAs is not only important for the families, but also for the social care and healthcare workers and health economics in society due to the huge expenses in this field.

| AIM
To explore family life with a child on HMV and PCAs from a family perspective.

| Design
We undertook a qualitative study with semi-structured interviews using a phenomenological-hermeneutic approach influenced by Ricoeur (Dreyer & Pedersen, 2009). Following Ricoeur (Ricoeur, 1973a), interpreting a text means seeing something new in what is taken for granted and disclosing a new sort of being-inthe-world. As such, the researchers in the study attempted to explain and understand the meaning of the interviews and promote a comprehensive understanding of the text, and thereby the study participants' lived experiences (Dreyer & Pedersen, 2009). With inspiration from Ricoeur, we explored, interpreted and described the phenomenon "family life with HMV and PCAs."

| Data collection
Data were collected from March-June 2019 consisting of interviews with 22 participants, divided in n = 5 children and n = 17 parents.
The families are defined as a group consisting of one-two parent (s) and their child/children living together as a unit.
The distribution of the interviews was as follows: Five interviews were conducted with five children aged 8-17 years, two of which were conducted without parents present and three with parents present. Seven interviews were conducted with the mother only and two interviews with the father only. In addition, four interviews where both mother and father were present and one as a family were conducted ( Table 1). The remaining eight children in the included families did not participate due to different reasons; The little ones, which included four children had not developed a language, two other children had not developed language due to their illness and the last two ones had language difficulties due to their illness.
Including children in different ages provided deeper understanding of their perspective. Each family decided whether they wanted an individual or a couple/family interview based on their wishes and preferences. A combination of types of interviews provided variation on family life with HMV and PCAs. The individual interviews provided a deeper understanding, whereas the couple/family interviews stimulated discussion and reflection, especially between the parents.

Data collection using interviews was influenced by Kvale and
Brinkmann (Svend & Steinar, 2015) and was based on semi-structured interview guides, which was divided into different research areas as "life as chronically ill," "decision about respiratory assistance," "having PCAs at home," "consistency in the patient pathway" and "everyday life" based on a systematic literature search. The structure of the interview guide was identic for both children and parents about the research areas, but the levels of abstraction and reflection were different (Clark, 2010). Examples of questions for children were "Can you tell me about having PCAs around you?" and "Can you tell me about your everyday life?" but with a bit of adjustment about their age and illness, because it was not a homogeneous group. Examples of questions for parents were "How do you experience having PCAs at home?" and "How do you experience your everyday life and family life?" On the basis of the families' own choosing, the interviews were conducted at the hospital or their family home, and lasted from 46 to 98 min. All interviews were recorded on a smartphone and transcribed verbatim by the first author.
The Consolidated Criteria for Reporting Qualitative Research checklist was used as a guideline (Tong et al., 2007).

| Sampling
Purposeful sampling was used when recruiting participants. To obtain data variety and sufficiency, we included participants with a chronic need for invasive or non-invasive ventilation, either for some hours a day/night or 24h a day and having or having had PCAs at home; we also ensured variety in terms of age (0-18 years), gender, ethnicity, family patterns and new/experienced families and PCAs at home ( Table 1). All children were diagnosed with chronic respiratory insufficiency and suffered from different diseases; neuromuscular diseases, lung diseases such as tracheomalacia and bronchopulmonary dysplasia, central apneas and facial anomalies.

Family 3
Girl

years
Non-invasive HMV 24 hr./personal trained helpers Living with mother, father and siblings (3a-b-c) Mother, father and girl (group interview)

Family 4
Girl 13 months Invasive HMV 24 hr./social and healthcare assistants Living with mother and father (4a-b) Mother and father (couple interview)

Family 5
Boy 10 months Non-invasive HMV 24 hr./social and healthcare assistants Living with mother and father (5a-b) Mother and father (couple interview)

Family 6
Boy 14 years

| Settings
The study was conducted at Respiratory Center West (RCW), Aarhus University Hospital, which is one of three centres in Denmark, which treats children <18 years with chronic respiratory insufficiency. The decision to offer respiratory treatment and surveillance is undertaken on the basis of shared-decision-making between the family and healthcare professionals such as chief physicians, nurses, social workers and financial assistants (Elwyn et al., 2012;Mesman et al., 2013).

| Data analysis
All textual data from the interviews were analysed by the first author and discussed by the research team using a method developed with inspiration from Ricoeur's theory (Dreyer & Pedersen, 2009;Ricoeur, 1973a). According to Ricoeur, text has to be interpreted, and

| Ethics
The

| RE SULTS
The findings, drawing on naive understanding and structural analysis, are described in relation to four main themes.

| Naïve understanding
Naïve understanding is the first step in a dialectical process between explaining and understanding, and it starts with an initial overall in-

| Coping with opposing emotions
Coping with opposing emotions meant having both positive and negative feelings towards the new situation with HMV and PCAs.
On the one hand, families were very grateful for having been assigned respiratory treatment and surveillance and stated that they had a strong emotional attachment to their child and that they felt enriched at many levels. It was important for the families to have friends, family members, healthcare professionals or a psychologist to talk to, because not having someone to talk really affected the families negatively and made them feel lonely and vulnerable. "When you (healthcare professionals) spend time talking to parents, we could feel it made a huge difference. Huge difference (1a)." Networking with other families in a similar situation was very useful and was a great informal way to ask questions and discover that they were not the only ones. "It really means a lot having a chat with someone who lives with it. (10a)." Navigating in health and social services systems became a significant stressor, because the systems were rigid and inflexible; and lack of communication, especially collaboration with their municipality, made families feel irritated, confused and sometimes even despondent. Parents dealt with fatigue and exhaustion, which they found to be increased when they had to deal with the different systems and administrations. However, families were dependent on help from public systems, which made them strive for overview and control. Many families used a basic family planner, whereas others chose to hire a private social worker, because they had a hard time understanding all the paragraphs in the legislation.
"There will always be some battles you have to fight. Just having a child who is sick is a struggle, and then you also have to fight against the system (8a)."

| PCAs are indispensable but hard to integrate into family life
Living in a family with a child with chronic respiratory illness and HMV meant being entitled to a team of PCAs, which brought mixed feelings to the family. On the one hand, families were grateful for having access to HMV, like it was a gift; but on the other hand, it was also hard and demanding.

| DISCUSS ION
Living as a family with a child on HMV and dependent on PCAs was extremely challenging and burdensome. It became a family project involving all family members in several ways and, therefore, difficult to make family life work. Long-term illness can result in a number of losses for almost all aspects of family life (Fay & Lesley, 2007;Israelsson-Skogsberg et al., 2018).
Families were vulnerable and had mixed feelings towards the new situation, but a desire to live a normal life. Longing for normalization when living with long-term illness has also been reported in other studies (Keilty & Daniels, 2018). Rehm and Bradley (2005), for example, claim that chronic conditions severely impact families' way of living and organizing life, and how families do not fit into currently established attributes of normalization; however, families also recognize that a different life, also can be satisfying and enriching (Rehm & Bradley, 2005). Families were also able to achieve a sense of normality in their routines; nevertheless, home has become a pub- Families in this study experienced opposing feelings, vulnerability and stress, similar to other findings on living as a family with a child on HMV or chronic disease in general. The psychosocial well-being of children with chronic disease and their parents and siblings is affected (Barlow & Ellard, 2006). Families are at risk at developing internalizing and externalizing symptoms that affect the families' QOL and physical and mental health (Barlow & Ellard, 2006;Caicedo, 2014). However, support from family members seems to mediate stress (Mah et al., 2008). In this study, sharing experiences with other families in similar situations and talking to professionals or someone closely related was very helpful and it contributes to families' ability to cope with the situation. However, families are at risk at developing chronic sorrow, because longterm illness can trigger a grief response in the child and family (Fay & Lesley, 2007).

| Methodological reflections
A qualitative approach using method triangulation during data collection contributed to ensuring the study's validity. Families, parents and children's reflections and discussions provided long in-depth narratives on lives lived with HMV and PCAs in a Scandinavian setting. It would have enriched the study if more children had been included; however, and, fortunately, the group of Danish children living on HMV is relatively small and we reached a point of data saturation, thus it was not a homogeneous group of children and families due to the sampling criteria. Besides, no sibling was included, only children and parents' perspective, which is a limitation, since the study explore family life.
Using the research software NVivo 12.0 strengthened the study because it helped to systematize the large amount of data.
Subsequently, a Ricoeurian way of interpreting and constructing the data in three steps ensured transparency and in-depth analysis, where four main themes were identified in the structural analysis.
Credibility is reflected in an exhaustive analytical process undertaken by the first author with the second authors providing supervision and critical direction.

| CON CLUS ION
Being enduringly ill and having home-based respiratory treatment differs from being cared for in hospital. Families are grateful for treatment at home; however, HMV and PCAs affect the family in several ways. Families suffer from mixed feelings and vulnerability.
Families' physical and emotional well-being are affected; it is challenging and burdensome to make family life work when the family is dependent on public help for a lifetime. Living with PCAs affects the families' privacy and they are hard to integrate PCAs into family life. HMV set-ups seen from a professional and societal point of view need to be improved and supported differently, which requires preparation for family life with HMV and PCAs.

ACK N O WLE D G E M ENTS
The authors are grateful and wish to thank all the families, parents and children, who participated in this study.