A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden
Abstract
Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families’ needs during curative and palliative home care. The aim of this study was to elucidate family members’ lived experience when a sick child received home care from county-based primary healthcare services. A descriptive qualitative design was chosen and 12 families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analysed using a hermeneutic phenomenological approach. The family members’ lived experience was described in three essential themes: “Strengthening family life” relates to how home care induced freedom and luxury in a strained period of life and supported the families’ everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. “Promoting health” relates to how the family members’ burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members’ psychosocial recovery. The third theme, “Creating alliances,” relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. The findings suggest that care in the family's home is a useful complement to hospital care. Home care should be given with close attention to family members’ needs and conditions, as positive effects of home care might be jeopardised when expectations and possibilities are not successfully shared.
What is known about this topic
- Hospital stays when a child is sick lead to difficulties for the family to maintain their everyday life and families often prefer home care to hospital care.
- Home-care services for sick children, with various organisations, have increased internationally and within countries.
What this paper adds
- Home care for sick children can strengthen family life and promote family health and is a valuable complement to hospital care.
- Successful home care is dependent on alliances being created and maintained between the family, the home-care service and the hospital, with close attention to each family members’ needs.
- Perspectives from sick children and siblings are important when communicating the families’ needs and preferences during home care.
1 INTRODUCTION
Children are individuals within a family and, as such, part of a complex system where individual emotions and reactions affect other family members and the family as a whole (Bowen, 1966). Thus, the family, defined as “a social context consisting of at least two persons characterised by mutual attachment, caring, long-term commitment and responsibility” (Craft & Willadsens, 1992, p. 519), is affected by the child's illness (Hallstrom & Elander, 2007). Sick children often can and want to be active partners in their own care (Schalkers, Dedding, & Bunders, 2015; Soderback, 2012) and should be enabled to participate in decisions on, and accomplishment of, care (Coyne, Hallstrom, & Soderback, 2016; Noel et al., 2015; United Nations of Human Rights, 1989; Wendler & Jenkins, 2008). Sick children have expressed increased fear and worry (Ekra & Gjengedal, 2012), decreased autonomy (Coyne, 2006) and feelings of boredom (Wilson, Megel, Enenbach, & Carlson, 2010) during hospital stays and their siblings have expressed feelings of worry and of being left out when hospital admissions split the family (Wilkins & Woodgate, 2005). Hospital stays also lead to difficulties for the family to maintain ordinary family life (Bjork, Wiebe, & Hallstrom, 2009; Darcy, Bjork, Enskar, & Knutsson, 2014). To meet these demands, the European Association for Children in Hospital (2015), World Health Organization (1998) and the Swedish National Board of Health and Welfare (2008) state that children should be admitted to hospital only when care cannot be provided at home. Thus, healthcare services for care at home have increased for children with acute and chronic diseases (Parker et al., 2012) and for palliative care (Huijer et al. 2007).
Home-care service (HCS) for children is described as care that “substitutes for acute hospital review and/or admission by providing clinical review, support, education and management of the acutely or chronically unwell child in their own home” (Parab, Cooper, Woolfenden, & Piper, 2013, p. 3). Internationally, there are different models for financing and organising HCS. Accessibility varies from 24 hr a day to a couple of hours a week (Parab et al., 2013; Parker et al., 2012) and can be organised for specific groups of patients, for example, children with a specific disease or for both children and adults regardless of illness (Parker et al., 2012). HCS can be provided by the hospital or the primary healthcare, and when HCS is provided by primary healthcare, children may constitute a minority of the patients and professional paediatric competence may be limited (Castor, Hallstrom, Hansson, & Landgren, 2017; Parker et al., 2012; Samuelson, Willen, & Bratt, 2015). In Sweden, accessibility to HCS for children is uneven (National Board of Health and Welfare, 2008), and when available, it can be provided by the hospital or by either county- or municipality-based primary healthcare.
Systematic reviews show that HCS might be feasible (Parab et al., 2013) and may bring unchanged or lower financial costs to the healthcare system and to the families with equivalent clinical outcome (Parker et al., 2012). Studies show that families with children suffering from various illnesses often prefer HCS to hospital care (Byrne & Hardy, 2005; Eskola, Bergstraesser, Zimmermann, & Cignacco, 2017; Hansson, Kjaergaard, Schmigelow, & Hallstrom, 2012; Hansson et al., 2013; Heaton, Noyes, Sloper, & Shah, 2005; Spiers, Parker, Gridley, & Atkin, 2011; Stevens et al., 2006b), and they find their everyday life less disturbed when care is given in their home (Angelhoff, Edell-Gustafsson, & Morelius, 2015; Eskola et al., 2017; Heaton et al., 2005; Stevens et al., 2006b). Most studies on home care for sick children have chosen a parental perspective. For example, studies indicate how lacking communication between parents and homecare professionals may lead to feelings of insecurity and overall lower confidence in HCS among parents (Spiers et al., 2011; Stevens et al., 2006b). Though support from municipality HCS is highly valued by parents, it is not always sufficient when paediatric or illness-specific competence is lacking (Kirk & Glendinning, 2004; Stevens et al., 2006b). This may leave parents with feelings of increased responsibility for care of the child during home care (Spiers et al., 2011). When chemotherapy was given to the child by the municipality HCS, parents expressed increased emotional distress and feelings of insecurity (Stevens et al., 2006a) while decreased strain on the family was reported when a child in the family received part of the cancer treatment at home from experienced paediatric oncology nurses (Hansson et al., 2012).
The accessibility, competence within and organisational structure of HCS affect family members’ experiences, and further knowledge of family member's needs during both curative (Parab et al., 2013) and palliative (Aschenbrenner, Winters, & Belknap, 2012) home care is needed. Especially, knowledge on children's unique perspective (Nilsson et al., 2015) is lacking though this is required to gain deeper understanding of the whole family's needs. The aim of this study was to elucidate family members’ lived experience when a sick child received home care from county-based primary healthcare service.
2 METHODS
2.1 Design
A descriptive inductive design including repeated qualitative interviews and a hermeneutic phenomenological approach (Van Manen, 1997) was chosen to capture the meaning of family members’ lived experience when a child in the family received HCS. In the hermeneutic phenomenological method, phenomenology relates to the description of how the phenomenon reveals itself in the four existentials that constitute human lived experience (Van Manen, 1997). According to Van Manen (1997), lived space refers to distances and volumes but also a qualitative dimension of “felt space.” Lived time reflects the subjectively and temporally experienced time and lived body our bodily presence in the world. Lived human relation refers to the relations we share with others in the interpersonal space (Van Manen, 1997). Hermeneutics relates to the interpretation taking place during the process of analysing, writing and rewriting the lived experience (Van Manen, 1997).
2.2 Setting
The study took place in a southern county of Sweden in which HCS is provided by the county-based primary healthcare to all inhabitants in need of HCS as a complement to hospital care. Care for children and adults is integrated in the service, but children represent less than 5% of the patients. Multi-professional teams consisting of nurses, physicians, counsellors, associate nurses, occupational therapists, physiotherapists and dieticians perform the care. Nurses and physicians are in service 24 hr/day. The HCS provides specified care tasks (SCT), for example, intravenous antibiotics or parenteral nutrition for children with acute or chronic illness, in cooperation with the paediatric departments. During SCT, the medical responsibility remains with the physicians at the paediatric department while the HCS nurse delivers care. When palliative care is provided, the physicians in HCS have the medical responsibility for the care of the child and are responsible, together with the HCS team, for the supportive care of the family.
2.3 Participants
Families where a child received HCS and were able to speak Scandinavian languages or English were given brief information by nurses in HCS. Names of the parents or legal guardians (hereafter all are called “parents”) who wanted more information were forwarded to the first author (CC) who contacted them. A purposeful sample of 12 families was contacted to capture a variation of children's diagnoses, ages, types of care, family conditions, living area and ethnicity (Patton, 1990). The children were aged 6 months to 14 years with a median age of 3.5 years, and their diagnoses included cancer, chronic lung disease, congenital hiatal hernia, heart disease and Lyme disease. Three of the children received palliative care and nine received SCT. Characteristics of the 37 family members who participated in an interview are presented in Table 1.
| Participant | N | Age |
|---|---|---|
| Ill children | 4 | 4–14 years (median 7) |
| Siblings | 10 | 3–16 years (median 9.5) |
| Parents | 23 | 26–66 years (median 38) |
2.4 Data collection
Fifteen interviews conducted by the first author took place between December 2015 and February 2017. Each family chose the time and place for the interview and decided which family members would take part. Repeated interviews were offered families who received HCS for several weeks. Interviews were conducted at different stages of illness and either during the child's home care, or one of the first weeks after the last care intervention. Two interviews took place 1 month after the ill child had died. Children participated according to their age, stage of illness and cognitive development. Each family member was asked to narrate his/her lived experience of receiving HCS. Families were encouraged to take photographs before the interview of moments or situations that represented a need or an important aspect when they received HCS. No families took new photographs, but they showed and talked about other photos during the interviews. The interviewer used a brief interview guide to introduce topics like different family members’ experience and needs during different stages of care. Follow-up questions like “can you describe what you were doing during…?” or “can you explain how you felt when…?” were used. Efforts were made to give each participating individual time and opportunity to voice their narrative. The interviews lasted 24–89 min (median 43) were digitally recorded and transcribed verbatim by the first author. Memos describing gestures and emotions shown by the participants were written down throughout the interviews. Two pilot interviews were conducted to test the method. As the interviews were found to be rich and captured meaning of family members’ experience, they were included in the analysis and no changes were made in the research plan (Morse, 2008).
2.5 Data analysis
The analysis started with a naive reading of the transcribed interviews including memos by all four authors who thereafter reread the text independently. Phrases and paragraphs that revealed the family members’ lived existentials, in terms of lived body, lived space, lived time and lived human relations, were identified (Van Manen, 1997). Colour codes, one for each existential, were used to elucidate the lived existentials in each transcribed interview, individually by all four authors. Thereafter, the authors compared the identified existentials to find the deeper understanding of the family members’ lived experience. The structure of their lived experience was then merged into preliminary subthemes and further on to essential themes during discussions, writing and rewriting among the authors. The first author started the process of writing, and all the authors discussed the relation between “the parts and the whole” following the hermeneutic spiral, to create depth in the family members’ lived experience of receiving HSC (Van Manen, 1997). Anecdotes and quotations were chosen to make the family members’ lived experience comprehensible as described by Van Manen (1997).
2.6 Ethical considerations
The study was carried out in accordance with the Helsinki Declaration (World Medical Association Declaration of Helsinki, 2013) and was approved by the Regional Ethical Review Board (Dnr 2014/818). Participants received written and oral information and children were given age- and language-appropriate information. Participants were assured of confidentiality, that participation was voluntary and that it would not affect their future care. Written informed consent was collected from parents and children over the age of 15. Children under 15 gave their written or oral assent. Each family was informed to contact the counsellor at the HCS if they felt they needed support after the interview.
2.7 Pre-understanding
All authors had extensive experience in nursing, three of them in paediatric nursing. Three of the authors were researchers advanced in qualitative research. None of the authors was involved in the child's care at home. Throughout the data collection, data analysis and writing process, all authors reflected on and discussed how the reliability could be influenced by the authors’ pre-understanding (Morse, 2008).
3 FINDINGS
Children and parents experienced getting home care as worth gold as it added freedom and a sense of luxury in a strained period of their life. Home care supported everyday life and saved time and energy in the families’ ordinary life, referring to the first theme, “Strengthening family life.” The care families received at home was perceived to ease the child's symptoms and provided a peaceful atmosphere for family members’ psychosocial recovery, leading to increased well-being for the whole family as described in the second theme, “Promoting health.” However, the much-awaited normalisation and recovery did not appear by itself and the process of familiarity and trust could be disrupted if communication about responsibility and participation did not take place, forming the third theme, “Creating alliances.”
3.1 Strengthening family life
Receiving care in the home normalised the families’ everyday life and family members could maintain their usual social activities and relations. Time and energy was released when they no longer needed to stay at or visit the hospital, which strengthened their family life.
3.1.1 Normalising family life
She could have her cat in the bed when he came to cuddle and we could all lie down together to watch television. (Father 4) (Sibling starts cuddling with the cat to show how nice it is.)
Before, we couldn't go to kindergarten on a day of blood sampling because I, my husband and our child had to reserve that whole day for the hospital. (Mother 8)
3.1.2 Saving time and energy
It was hard to go to the hospital again and again and I told them that I can't come because I get tired and don't have the strength to do anything.(Sick child 9)
It was difficult when the whole family couldn't be together at home but it was a relief when they came home!(Sibling 2c)
3.2 Promoting health
During the home care, the families’ expressed that some of the signs of illness were alleviated. The family's burden of illness was thus relieved and family members felt increased well-being, providing ground for rest and recovery.
3.2.1 Alleviating signs of illness
His appetite is poor when he's in hospital so it's a relief to come home the day after so he eats properly and if home care is a way to come home then it means he eats better at least 1 day more. So that's really a relief.(Mother 1)
Home care eased the stress for the siblings when they knew that they could stay at home without worrying about where to spend the night, and they continued or resumed their own lives instead of adjusting their life to the ill child all the time. This was important for alleviating the parents’ stress and insecurity and was helpful for them to maintain control of their parenthood.
3.2.2 Providing relief
They see her in her home environment and, because of that, they can evaluate what might be beneficial for us.(Father 11)
When they came here, they offered the two of us (looking at his mother) to do something together! But, at that time I didn't want to.(Sibling 11)
This gave family members a respite and the courage to start to cope with their own situation and their psychosocial recovery in a way they had not been able to before. When home care was provided during the child's end of life, the parents felt how this helped the family to prepare for life after the death of their sick child.
3.3 Creating alliances
Family members described how unfamiliar procedures became familiar over time. Confidence in home care was created and maintained by trusted alliances between the family and healthcare professionals. If alliances were not created, this could lead to anxiety and a sense of overwhelming responsibility in parents.
3.3.1 Bridging the unfamiliar
The first day she was a bit puzzled. I believe she wondered, what are they doing here with the white clothes that belong to the hospital? But then, we made up routines and when they came here she went to the bed! So they arrive and start to prepare and she goes to prepare herself. That's a relief.(Mother 12)
Family members were helped through the emotionally difficult transition period when the child's care shifted from the hospital to HCS through careful planning involving the paediatric department, the HCS and the family. Especially important was continued support from the paediatric department when children received palliative care as lack of support made family members feel abandoned and insecure.
3.3.2 Building and maintaining trust
Siblings felt acknowledged when home-care professionals had time to talk to them about pets or hairstyles in a nice and friendly way and were otherwise pleased when home care blended into the home environment without interfering with their whereabouts. Siblings were not always even aware of HCS having visited. “What?! Have they?!” (Sibling 6).
Well, now it's just an injection he's getting. If it had been blood samples, then I would not have liked it because it's difficult on him, to get a blood sample.(Mother 5)
When trust was broken, the parents became worried and fearful, and in their despair, they were unable to maintain their parenthood as they were not able to protect their children from the worry that was spread among all the family members.
3.3.3 Communicating shared decision-making
You feel alone, and insecure. Oh, your child is ill and will not survive it and they (home-care professionals) ask those type of questions, then you get really mad.(Mother 3)
When he has friends over and I have friends over during a home care visit he always wants us to be there and watch (Sibling 10). There! (Sick child 10, pointing at the sofa)
4 DISCUSSION
Family members’ lived experience of receiving home care when a child is ill was described as strengthening family life and promoting health, provided that trustful alliances were created, when home care was received from county-based primary health service. The findings build on the existing knowledge of family needs during home care, with insight into the family members’ perceived possibility to spend more time together, with alleviated signs of illness and induced feelings of relief. It further highlights the important, though fragile, nature of the alliance between the family and the healthcare professionals, providing a possibility for freedom and a sense of luxury in a strained period of their life both during SCT and end-of-life care.
The findings show that home care supported family life as everyday activities became possible, and time and energy was saved when they no longer needed demanding hospital visits, expressed as family members’ lived time (Van Manen, 1997). This is in line with previous studies showing that families feel more in charge of their time (Eskola et al., 2017; Heaton et al., 2005). Our findings showed that the family members experienced that they slept better and that the children ate better, reflecting their lived body (Van Manen, 1997). Angelhoff et al. (2015) likewise described how parents’ sleep was less disturbed when the family could avoid hospital stays (Angelhoff et al., 2015).
Our findings suggest that the ill children, siblings and parents received support from the home-care professionals that was helpful to start coping with their psychosocial situation. This can promote a changed relationship between family members, as the individual's capability to think about, or react to an event is dependent on the individual's level of stress and anxiety (Bowen, 1966). When planning for home care, it is, therefore, important to map the family system, and family members’ well-being, and to identify their potential resources and stressors so that adequate psychosocial support can be provided (Bowen, 1966) early during home care. Siblings described positive aspects of home care, such as keeping the family together and allowing them to be more involved in the care of their ill sibling, also described earlier (Hansson et al., 2012). Family members experienced that staff kept focus on the ill child when the ill children became active partners in the planning of care while the needs of other family members were also taken into consideration, consistent with child-centred care (Coyne et al., 2016). This is interesting, as home-care professionals have expressed feelings of inadequacy due to limited paediatric experience (Castor et al., 2017; Chong & Abdullah, 2017; Samuelson et al., 2015).
Moreover, our study contributed to deeper insight into the fragile nature of the alliance between the family and the healthcare professionals. In order to successfully strengthen family life and health, shared decision-making and partnership seemed to have a key role. This contributed to a trustful relationship between family and homecare professionals, representing aspects of the families’ lived human relations (Van Manen, 1997). This study showed that HCS can play an important role in making families feel more secure during the transfer from the hospital to the home, earlier identified as a complicated and vulnerable time (Barnard et al., 2013; Branowicki, Vessey, Temple, & Lulloff, 2016; Manhas & Mitchell, 2012; Sparud-Lundin & Hallstrom, 2016). Even though families found the start of home care unfamiliar, well-communicated partnership and responsibilities helped them feel safe and relieved in a way family members in other studies have not found (Aschenbrenner et al., 2012; Kirk & Glendinning, 2004; Stevens et al., 2006b). A clear care plan on what to do in case of an unexpected situation and continued involvement of the paediatric department was important for families while lack of communication led to feelings of insecurity and an overall lower confidence in HCS shown also in earlier studies (Spiers et al., 2011; Stevens et al., 2006b). When communication between the family, the HCSs and the paediatric department failed, it led to an intense response on the family system (Bowen, 1966). Parents felt exposed and unable to fulfil their parental duties and siblings experienced home care as intruding their home reflecting their lived space (Van Manen, 1997). Thus, the findings highlight the risk of miscommunication being perpetually present, and this should be given extra attention when language or culture is not shared, the care plan is unclear or transfer from the hospital to home is unprepared.
4.1 Methodological considerations
A research plan, developed before the study, enhanced the steps taken throughout the study to ensure rigour (Morse, 2008). The families were asked to take photographs during the HSC before the interview that captured their lived experience. The use of photographs to recollect and deepen the memory of a situation (Harper, 2002) has been successful in earlier studies with children (Ekra & Gjengedal, 2012; Whiting, 2014) though limitations have been acknowledged (Mandleco, 2013). The families in the present study did not take photographs before the interviews. One possible reason might be that everyday life, being together and wishing care to be invisible are difficult aspects to capture in a photograph. However, family members related to other photos already taken and discussed these to describe and exemplify what they meant during the interviews. Confidentiality and informed consent from the involved children were given special attention before and during the interviews when the children were carefully informed about the purpose of the research and their optional participation throughout the interview (Kirk, 2007).
Interviews in the family home facilitated participation of all family members. Credability was strengthened as sick children and siblings of different ages actively contributed to parts of the interviews by telling their story in their own words or agreeing to other family members’ experiences by nodding or “humming assent.” The interviews grasped both the child's perspective and a child perspective (Nilsson et al., 2015) supplementing the parent perspective to form the families’ lived experience. The variety of care needs, ranging from short-term treatment for a curable disease to end-of-life care, could be seen as both strength and limitation. However, the effect of illness on a family is not restricted to diagnosis or prognosis but rather to how the family embrace and handle the situation according to family pattern of reactions and level of anxiety (Bowen, 1966). The interviewer's experience of caring for ill children enhanced the possibility to pick up a comment or follow the child's story without interrupting with questions. Different caring perspectives among the authors enhanced dependability; with all authors contributing throughout the process, they helped each other to be aware of pre-understandings. To strengthen confirmability, the process of analysis was clearly described, and anecdotes and quotations from the narratives supplement the findings. Further, descriptions of the setting and participants, the inclusion of families from different cultures and areas, with children of different diagnoses, ages and status of illness, the results are likely to be transferable to other areas of HSC (Morse, 2008).
5 CONCLUSION
Home care performed by county-based primary healthcare service can entail benefits like strengthened family life and promoted health in families with acute, long-term and palliative care needs in children. Home care is, therefore, suggested to be offered as a complement to hospital care. The extent of care should be discussed and decided upon in cooperation with the family, home care and paediatric department with close attention to each family members’ needs and conditions, as positive effects might be jeopardised when expectations and possibilities are not successfully communicated.
