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Community-based support for children who are next-of-kin for a parent experiencing illness or disability – a scoping review

Abstract

Introduction

Children who are next-of-kin, for a parent who experience illness or disability, need support. In Norway, guidelines, routines and structured approaches in the community health services are lacking regarding involving children in the care of a parent and for services when supporting children as next-of-kin. Additionally, no existing international review has focused on support from community health and social services for children who are next-of-kin to a parent regardless of the specific illness or disability.

Aims

This scoping review examined the current knowledge regarding the types of community health and social services support to children 0 to 17 years old living with a parent experiencing illness or disability. The review also identified children’s support preferences and needs.

Methods

The scoping review involved five stages; identifying research question; identifying relevant articles; selecting articles; charting the data and finally, collating, summarizing and reporting the results.

Results

Articles which included community health and social services interventions and children’s preferences or needs for support were included. The foci of interventions included preventive education, peer support, psychosocial support, and interventions focusing on family communication and recovery planning. Articles focusing on children’s preferences or need for support described their wish to be recognized as a next-of-kin, having someone to talk to and professional and peer support.

Conclusion

The review highlighted the importance of children receiving support according to their preferences. It is important to elicit children’s voices, to ensure community health and social services are developed for and tailored to this population.

Peer Review reports

Introduction

Children who are their parents’ next-of-kin include those who live with biological, adoptive, step- or foster parents experiencing illness or disability. We define disability in line with the UK equality Act (2010): including physical or mental disability that is a substantial and long-term and has adverse effect on a person’s ability to carry out normal day-to-day activities [1]. While the precise number is unknown, Maybery et al. estimate that, worldwide, one in five minors have a parent with a mental illness [2]. Adding children of parents with physical illness or disability would likely increase this estimate significantly [3, 4].

Children who are next-of-kin for a parent with an illness or disability work hard to understand what is happening and how to cope [5]. Children have a right to be involved in their parents’ conditions, have information and knowledge about their illness and have a voice in matters that affect their own situations in relation to this [6]. Nonetheless, children are often overlooked by services at a time when they need information about their parents’ state of health [7]; not knowing this information may increase their vulnerability [8]. They do not only need medical information (like what an illness is) but also learn how to adaptively cope with their parents’ illness [9].

More likely children who have been next-of-kin for a parent develop mental health problems such as anxiety and depression than children of healthy parents [10]. For instance, there appears to be a correlation between parents’ mental disorders and children’s behavioural difficulties and impaired psychosocial functioning [11]. Joseph et al. states, after summarizing research that 2–8% of children and young people can be defined as carers (varying from caring about to caring for a relative, irrespectively of diagnosis) and that this role may have a negative impact on their education, health, wellbeing, social opportunities and employment prospects [3]. Cuijpers et al. however, argue that it is hard to predict all known risk factors that develop mental disorders later in life among children living with a sick parent [12].

Support for children from community health services

In community health care services, guidelines and routines regarding involving, identifying, giving information, advice and support to children as next-of-kin are lacking [13]. With community-based support we mean support provided by community health or social services, including care provided at community centres, primary health services and schools, as well as any of publicly or privately provided services intended to aid vulnerable persons or populations.

Guidance and long-term follow-up, it has been argued, should take place in the community where the children live [13]; however, there is often a lack of interaction between specialists and community health services around the follow-up of children who are next-of-kin. Structured interventions in clinical practice are a necessity, to ensure that children are approached in a manner that meets their needs and promotes their health and wellbeing. Positive coping strategies may increase young people’s level of mental health literacy [14]. The need for a child-friendly environment and the knowledge and experience of family-focused care is vital and should be prioritized. Depending on the level of a child’s involvement in the care of a next-of-kin their needs might vary, which should be taken into consideration when tailoring support [15]. According to Grove, et al., children need health care professionals that advocate for policies that support individual-, peer-, and family-focused programs that build on robust evaluation and research [9].

Globally, nurses work with children and their families, treating, supporting, teaching and following up on them in their everyday life, especially when they experience challenges. According to Foster et al. [15], nurses, such as the public health nurse, are in a key position to identify these children and address their needs. It is essential that children and their parents are able to know and trust that they can access support from health services when needed—as such, there must be a clear framework in place concerning the distribution of responsibility for this support [13]. In Norway, since public health nurses (PHNs) work in the community, in both health centres and school health services, they meet most of the children and their families living in the neighbourhoods [16, 17]. They may be best-positioned to identify, support and follow up on children who are the next-of-kin for an ill parent or a parent with a disability, and to provide them with support resources. To guide developing and implementing such work, a review of the scientific literature would offer a valuable synthesis of the current knowledge.

Many studies have examined support for children whose parents experience specific illness or disabilities, and literature reviews involving such articles have been conducted. However, these reviews largely centre around the children of parents with a specific illness [5, 11, 18]—most commonly a mental illness or cancer, or who have parents in palliative care [19, 20]. As such, the focus of these reviews is on the children’s experience of living with an ill parent, rather than on their support needs or experience with specific support interventions and services.

To our knowledge, no existing review has focused on community-based support, needs and preferences for support to children who are their parent’s next-of-kin, regardless of the specific illness or disability. Given the importance of support provision in the context in which these children live their daily life (i.e. at home), increased knowledge about their experiences with community-based support and their specific support needs and wants is fundamental. This insight informed by the children’s own voices and building on good evaluation and research is essential if community-based services are to be developed and tailored to this population.

Aims

The previous scoping review examined the current knowledge of community-based support interventions for children 0 to 17 years of age living with a parent experiencing illness or disability, as well as these children’s needs and preferences for support from community health services when being a next-of-kin.

Methods

This scoping review was conducted following the reporting guidelines provided by PRISMA [21] and the methodological framework of Arksey and O’Malley [22] further developed by Levac, Colquhoun and O´Brien [23]. This methodological framework includes the following stages: 1) identifying the research question; 2) identifying the relevant articles; 3) selecting the articles; 4) charting the data; 5) collating, summarizing and reporting the results; and 6) consulting (optional and not included in this review). In reporting, we adhere to the PRISMA guidelines for scoping reviews [21].

Stage 1 identifying the research question

The study’s aim informed the eligibility criteria of this scoping review. The aim and eligibility criteria were in turn informed by the ‘interest, target group and outcome’ approach [23] which is often structured and referred to as PICO (P = patient/problem, I = intervention, C = comparison and O = outcome) [24]. In the present study, the target group was children who were their parents’ next-of-kin in the event of illness or disability (P); the focal point was on community-based support operated or organized by health professionals or social service staff (I); and the outcome of interest was twofold—interventions regarding support provided by community health services to children who were a parents’ next-of-kin, and the children’s support needs and preferences (O).

Stage 2 identifying the relevant articles

Eligibility criteria

Articles were eligible for inclusion if they included 1) children who are their parents’ next-of-kin in the event of illness or disability, and 2) community-based support operated or organized by health professionals or social care staff and/or 3) children’s preferences, needs and outcomes with regard to support interventions from community health services. See Table 1.

Table 1 Eligibility criteria and PICO

No limitations were set concerning parental diagnosis, as children may need support regardless of their parents’ specific illness or disability. Joseph et al., in a narrative review, argues that it is not the parents’ diagnosis that determines what type of support the child needs, but rather how the child’s life is affected [3].

The limitation of the children’s age was up to 17 years, based on Article 1 of the Convention of the Children’s Rights [6]. As the present study targeted support provided or organized by community service professionals, articles focusing on support provided by non-professionals or hospital-based support were excluded.

Articles included in this review were theoretical papers (models) and empirical or review articles using the Introduction – Method – Results – and – Discussion (IMRAD) structure, published between 2009 and 2019, and written in English or a Scandinavian language, such as Swedish, Danish and Norwegian. The timeframe for the included articles was limited to 2009 to 2019, due to changes in the legislation and/or care policies concerning children in the authors’ countries of origin. As of 2010, the specialist health service in Norway began being required to have a child welfare advocate in each department [25]. This same year, children’s rights as next-of-kin were strengthened in Sweden, whose Medical Service Act (specifically, Chapter 5, §7) stated that the health service sector should recognize children of ill or impaired parents and ensure that their information and support needs are met [26]. The eligibility criteria are presented and elaborated in Table 1.

Search method

The search strategy was developed by the authors and the electronic database searches were conducted by an academic librarian (EO). Searches were performed from 3 December to 5 December 2019 in the following databases: CINAHL (EBSCO); Ovid MEDLINE (1946 to November 2019); OVID PsycINFO (1987 to November 2019); OVID Embase (1974 to November 2019); OVID AMED (1985 to November 2019); Cochrane Library (Wiley); Scopus (Elsevier); and Swemed. A combination of subject headings and text words for each element were used and adapted for the search strategy of each database. The full search strategy for CINAHL and Ovid MEDLINE is available from https://hdl.handle.net/11250/2688211. To enhance the coverage of relevant articles, the reference lists of identified review articles were reviewed for articles that had not been identified via the electronic search. Reference lists of included articles were also screened for relevant articles by the authors (AKMS, AAC and TS).

Stage 3 selecting the articles—identifying relevant articles

A flow diagram (Fig. 1) shows the identification and selection process, as recommended by Tricco et al., (2018). The electronic database searches generated 5289 references and the manual searches of reference lists resulted in 37 references. Duplicates (n = 2031) were removed using EndNote X9 (Clarivate Analytics) and manual sorting, which led to a total of 3282 references. Titles and abstracts were screened in pairs by the authors (AAC, TMS, AKMS) for relevance related to the aim of the study and the eligibility criteria. This yielded a total of 114 articles to be assessed by the authors in full text. The articles were divided into three groups and the reviewers examined the articles in pairs. In each pair, the authors first independently read the articles and then carefully discussed all uncertainties or disagreements until agreement was reached. As a result, 87 articles were rejected, since they did not meet the eligibility criteria at this stage, leaving 28 articles to be included in this review.

Fig. 1
figure1

Flow Chart Identification and selection process of articles

Stage 4 charting the data

Arksey and O’Malley [22] describe the charting process as multi-staged, involving extraction of information from individual articles. The researchers collectively developed the data charting form including which data to extract from the articles, as recommended by Levac et al. [23]. Data were extracted according to reference and country of origin, aim, study design and data collection methods, information about the participating children (age and gender), parental diagnosis, intervention/support given or preferences for support, and relevant outcome/findings. First, the data extraction was piloted for nine articles to ensure a mutual understanding of how to extract data relevant to the aim of this study; the interrater agreement for these was high. Then, data were extracted independently by the authors and discussed in pairs until consensus was reached. The results of the data charting process are shown in Table 2.

Stage 5 collating, summarizing and reporting the results

The data were collated and summarized in three ways. First, to provide a structure for the identified articles, the articles were sorted alphabetically and given an individual number; the data extracted from each article were then collated and summarized in a data charting form (Table 2). Second, the data concerning the interventions were collated and summarized in three categories in a separate table (Table 3), according to type of intervention. Third, the process of collating and thematically summarizing the data regarding the children’s preferences for support was conducted (Levac et al., 2010), as presented in the text in the results section of this review article. The themes identified were based upon the findings described in the included articles. Similarities and differences in the findings were identified and grouped into themes, and the themes were then labelled and described. This process and the identification of the themes were discussed within the research group until consensus was reached. We did not use an inter-rater reliability process in the thematic analysis, since this is not specifically recommended in the method literature [21, 23].

Results

Overview of included articles

The included articles were published between 2009 and 2019, as shown in Table 2.

Table 2 Data charting form, data extraction from the included articles

Of the 28 included articles, all but one [27] were empirical articles describing the outcome of an intervention (Table 3) or children’s preferences or expressed need for support when being a next-of-kin.

The parental illness in the articles varied. A majority focused on mental illness of some kind (n = 10), cancer (n = 8), alcohol/substance abuse/use (n = 5) or mixed diagnoses of mental illness and alcohol/substance abuse/use (n = 3). In one article, the parents experienced migraine, and in another article, the diagnoses were not specified. None of the included articles focused on parental disability. The empirical articles were conducted in 11 different countries, on 4 continents: Europe (n = 11), North America (n = 8), Oceania (n = 7) and Asia (n = 1). The theoretical paper was written in Australia [27].

Eleven articles focused on empirical outcomes of interventions primary focusing on the child, one focused on support offered to mothers of children up to 36 months [28] and six articles described outcomes from family interventions (Table 3). The remaining ten articles described the results from articles focusing on children’s preferences or expressed need for support. The study design in the articles varied; most of the articles employed a qualitative descriptive design (n = 16), based on individual interviews (n = 8) or focus groups (n = 1). In three articles, it is not specified whether the interviews were individual or focus groups. Finally, multiple qualitative data collection methods were used in four articles.

Table 3 Support and interventions

Of the articles with a quantitative design, three of them described the results from randomized controlled trials [28,29,30] and one used a two-arm pre- and post-intervention [31]. Two observational studies also had a pre–post design [32, 33] as did one [34] of the two mixed-method articles [34, 35]. Finally, there were two cross-sectional observational studies [36, 37] while four of the included articles reported on pilot studies [28, 31,32,33].

The interventions

The interventions identified in the included articles were collated and summarized according to two themes: interventions focused on the child and interventions focused on the family. The structure of the interventions focused on the child and those focused on the family had various approaches and mixed outcome effects. Seven studies were longitudinal, with more than one measurement reported. The outcome measurements varied across articles, and the outcome for the children varied, but improvements were often reported. For example; Knowledge about the parent’s illness increased in all reported studies where this aspect was measured. The children appreciated meeting with other children living in similar situations, to share experiences and engage in activities offering some fun and distraction.

Interventions for the child

The articles varied as to the number of participants and how the participants were grouped according to age. The articles focusing on children included participants between 2 and 19 years (Table 2). There were seven studies which included children between 6 and 13 years, four with children between 10 to 18 years [33, 38,39,40] and one with children between 2 and 19 years [41]. One article reported the average age of the participating children to be 13.6 years [38].

The interventions targeting children were carried out for shorter or longer periods. Most lasted from six to 9 weeks (n = 10) and had modules of one-and-a-half to 2 h (n = 5). One article involved a school holiday programme with an optional follow-up after school programme carried out as a weekly two-hour session over one school term or fortnightly over two school terms [32]. One article did not report the duration of the intervention [38].

The various interventions for children were described in the articles as: preventive education interventions to prevent psychosocial problems, psychopathology and to help cope and ease difficult feelings related to being a next-of-kin of a parent having an illness [30, 32, 33, 42] and peer support alone or as a 4 weeks intervention program within the school holiday and/or an after school programme [32, 42]. Some were described as a psychosocial support programme [43, 44] and one as an internet café [38], while others were reported as having digitized some components [40]. One article described three new innovative services for children and young people living with parental substance abuse: first a structured group programme with a small number of families (usually between three and eight); second, offering a range of individual and group support to children over approximal 6 months, and last an outreach service for families where the client in focus is the parent with the alcohol or drug problem, but where other family members including children are involved [39]. Finally, one article reported about an equine-assisted therapy programme [45].

Family interventions

In the studies that examined interventions focused on the whole family, in four of the articles, the age range of the children was between 5 and 18 years [31, 34, 46, 47]. One of the articles did not report the age of the participants [36].

Among the family interventions, the length of one intervention was not described [32], while the other four had a duration of 2 weeks to 1 year [31, 36, 46, 47]. Two of the family interventions emphasized education about how to cope with parental cancer and mental illness; one centred around family communication and children’s increased knowledge of their parents’ illness and their sense of relief by gaining a better understanding of the parents’ illness and the other about parents meeting professionals who helped them to speak about the illness and further speak with the children so they could understand it better [46, 47]. One focused on family recovery planning where a parent has a mental health or dual substance and mental health problem, making different goals for the recovery [36]. At last, one intervention was aimed only at mothers, focusing on the interaction between the mother and her infant [28].

Outcome measures of the interventions

The included articles reported about a range of outcome measures (Table 2). The majority of these aimed to measure burden on the child, in terms of the impact of parental illness [37], health-related quality of life [30], emotional problems [29], stress [30], anxiety [31, 41], depression [31], sleep behaviours, eating habits [41], self-concept [30], self-esteem [32], and cognition [29]. The child’s social functioning was measured in some studies, in terms of behavioural problems in the child [29], connections and relationship problems [32], and interactions with schoolmates and school performance [41]. Furthermore, some studies used coping as an outcome measure of the intervention. This concept was defined differently depending on the use of various instruments, such as coping [30], coping skills [31], adolescent coping orientation to problem experiences [33], help-seeking [34], perceived competence [29] and communication—both general communication [31] and communication about illness [41]. The child’s social support was also used as an outcome measure [29].

Furthermore, in some studies the degree of specific knowledge was measured, such as addiction-related knowledge [30], mental illness-related knowledge [34], and knowledge of psychiatric illness and recovery [33]. The child and parental relationship was another outcome measure. This was captured using instruments focusing on parent–child interaction [29], parent–adolescent relationship [31], relationship with the ill family member—specifically the ability to differentiate from parent/caregiver and to feel secure at home [41]; in one article, the relation between the child and parent was captured via structured observations of caregiving behaviour and child behaviour [28]. Children’s support needs were measured in two studies. One of these used a study-specific questionnaire concerning the types of support young people want when a parent has mental illness [29]. In the other article, an online survey was described to assess support needs for mitigating the impact of parental illness on children [37]. Finally, in three studies, the participants’ experiences of the interventions were evaluated by a satisfaction survey [31] and by completing pre-intervention and post-intervention questionnaires, around mental health knowledge, help seeking, as well as the usefulness of information provided by a DVD. There were also interviews conducted about the experiences and use of the DVD [31, 34].

Children’s support preferences

Of the 28 articles that met the inclusion criteria in this study, 10 focused exclusively on children’s preferences for support from community health services. These articles collected children’s preferences via qualitative interviews, with the exception of two articles that used a mixed-methods approach [29] and a cross-sectional quantitative approach [37]. The support preferences described were primarily based on responses from children between 11 and 18 years of age. However, two articles included the preferences of older participants with a retrospective view [48, 49]; and two articles with participants from 11 and 26 years of age were also included, since most of the participants were within the inclusion criteria of up to 17 years of age [50, 51].

Most of the children expressed preferences for professional support (57.2–94%) [29, 31]. Children’s preferences for support are further described by themes related to their identified preferences: namely, recognition of being next-of-kin, support for the child, and support for the family.

Wish to be recognized as next-of-kin (n = 7)

Children expressed preferences for being recognized as being next-of-kin for an ill parent and being fully included as a relative by professionals treating or caring for their parent. This included knowing and meeting whoever was responsible for their parent’s care, e.g. the doctor [52], and being acknowledged by the responsible healthcare personnel [53]. To be recognized as a relative included having their need for information and communication concerning their parent’s illness, care and treatment acknowledged [35, 49,50,51]. It was important to the children to have the opportunity to talk to a competent professional who could provide them with sufficient information [35]. They also needed information that the illness was not their fault [35] and education regarding relevant legal issues [51]. However, a large proportion of children relied upon their parents for information (82.5%) [37]. Being provided information (e.g. on a DVD) in addition to that given by healthcare personnel was also preferred [35].

Support needs for the child (n = 8)

Several articles described children’s support needs around having someone to talk to [37, 48, 49, 51, 54]. The children needed someone to talk to about their feelings, their problems [45, 48, 51] and their parents’ diagnosis [37]. Moreover, they needed to talk to someone who could listen and understand, and who were encouraging and reassuring [49, 51]: this person could be a family member, other children participating in peer support groups and healthcare professionals. However, some needed to have some time alone, to think and manage their emotions [52].

Children expressed both a preference and need for professional support to cope with being next-of-kin to an ill parent. Most of the children expressed preferences for professional support (57.2–94%) [35, 37]. The children in the included articles highlighted the importance of recognizing the children’s needs and responding to these [4]. However, one article described that the children’s needs changed according to different stages of the parent’s mental illness [51], which highlights the importance of taking the illness trajectory into account when providing professional support to children. Children wished to learn how to cope with their situation and get help to make their situation manageable [29, 43]. This included help in managing their parent [48, 54], especially when newly discharged, and further access to professional help when needed [51]. Cooperation between professional support services and the children’s school was also highlighted, in that children preferred that information also was provided to the school about their parents [52]. Simultaneously, confidentiality and anonymity were important to children [35].

The children also had preferences concerning professional help regarding ways to manage the anger and emotional outbreaks they had related to their situation [37, 48, 52]. In meetings with healthcare professionals the children described that healthcare personnel at times recognised their problems without responding or not follow up by an intervention or an invitation to talk. This was perceived as an ambiguous frame and could lead to feelings of betrayal [42].

Support from peers, family and friends

Peer support groups were identified as another source of support for children who were an ill parent’s next-of-kin [35, 48, 52]. Children had explicit preferences for social support from peers who had been through the same experience [52, 53]. Peer support was perceived as important just after their parent’s diagnosis and during their treatment [53]. Peer support groups were considered a safe place in which the children could interact with and talk to other children in similar situations and engage in activities that provided a sense of normality. Involvement in a peer support group also fulfilled children’s preferences for distraction (respite), enabling them to have a break from their parent’s illness and difficulties at home [48, 52], have fun and relax [35, 53]. Children’s need for social support could also be met through engaging in normal life experiences, for example being with friends and their families or a neighbour [48].

Support needs for the family (n = 5)

The children expressed preferences for support, not only for themselves, but also for their family. The children reported that their family needed support to facilitate closeness and connectedness, and to facilitate better parent–child interaction while the parent was being treated in an institution [50] and in general [54]. The children also reported a need to spend time with their ill parent and play an active role in the family [52]. Here, family support included both financial support [48] and practical support [48].

Discussion

Summarizing the main results

The current scoping review aimed to identify: 1) current knowledge about community-based support for children 0 to 17 years of age who are next-of-kin living with a parent experiencing illness or disability, and 2) children’s preferences and expressed needs for support. The results indicate that there are existing supportive interventions for children who are next-of-kin for parents experiencing physical and mental illness developed in communities. Most interventions identified were related to mental illness, including substance abuse. No article was identified involving supportive interventions in relation to living with a parent with disability.

The interventions were offered to children of all ages, but more often to children in the higher age-span. The interventions typically had a duration of two to 3 months. Moreover, although most interventions did show some effect after a short period, no intervention was evaluated after 6 months. There were 19 interventions, 12 had a child focus, 6 family focus and one a mother and child focus. The child focused interventions largely centred on giving the children additional knowledge about the illness, helping them communicate with their parents about difficult challenges, such as shame, living in a family with an ill parent; and alleviating guilt they might be feeling about living their own lives. Of the articles aimed at children’s preferences or need for support, children aged 11 to 18 years were primarily the ones who voiced their experiences. They revealed a need for support for themselves, as well as for the entire family; moreover, they wanted to be recognized as a next of kin such as a grown up, despite being a minor. There is a limitation that support preferences and/or needs of children 10 years and under were not reported in the qualitative articles identified.

Methodological considerations

The primary strength of the scoping review as a research method is that it enables the inclusion of articles with a range of methodologies; as such, the reviews can draw on and aggregate a broader knowledge base and more comprehensively address gaps in the literature [23]. The present study comprises papers reporting on both qualitative and quantitative designs, and one theoretical paper.

The validity and reliability of this study was strengthened through adherence to the stages of performing a scoping review as recommended by Levac and colleagues [23] and to Tricco et al. [21] reporting guidelines. The use of PICO resulted in explicit eligibility criteria that guided the searches and selection process, as well as each stage of the review process. Another strength was that the research team included researchers with competence in the field and the methods used. The research team also included an academic librarian trained in performing searches for systematic reviews. This ensured a transparent search process, for which the full searches are visible at https://hdl.handle.net/11250/2688211. The searches included eight relevant databases for the topic of interest using both subject terms and free text search terms, and searches in reference lists that resulted in additional references. This contributed to both breadth and depth in the searches, which is important for a comprehensive scoping review of the existing literature [23]. However, a limitation is that only research articles and theoretical papers were included (and thus not e.g. grey papers), due to the timeframe of this project.

The team of researchers worked closely together to ensure rigour at each stage of the review. For example, the selection of the articles and data extraction were first performed independently by the researcher and then discussed in pairs. Uncertainties and disagreements were discussed by the researchers before a decision was taken about inclusion or exclusion and about what data should be extracted from the articles. Similarly, the collating and summarizing of the data were discussed until consensus was reached. This increased the validity and reliability of the selection and the interpretation process [23].

The inclusion criteria of this study specified including children from 0 to 17 years of age. However, the articles sometimes included children above 17, or included older children who talked about their experiences retrospectively. We chose to include these articles because these still contributed important knowledge for the field.

Articles were included if they had provided substantial findings from the children’s perspectives. However, many articles were excluded when the children’s perspectives, preferences or outcome measures were not the focus or were clearly separated from other perspectives (e.g. that of the parents or healthcare provider). This was often seen in articles about support for new-borns, and therefore few articles were included in the review for this age group. Further research on children’s support preferences should therefore clearly separate and highlight the findings regarding children’s preferences, specifically.

Of the articles included, 17 were reports regarding interventions to children. These had two different areas of focus: supporting the child and supporting the family, including the mother. However, each article that was included in the review typically evaluated one specific intervention. Several evaluations of the same type of intervention in different contexts would strengthen the validity of the intervention. Additionally, the evaluation of the interventions was performed using a wide range of different outcome measures, hindering accurate comparison of the effect of the interventions.

Developing interventions is complex. According to Craig et al. [55] framework, the process of developing interventions should include describing the development process (identifying the evidence base), piloting and feasibility testing, evaluating (assessing effect) and implementing the intervention (disseminating, long-term follow up). None of the interventions identified in this review were found to fulfil these criteria/stages. As such, more research is needed before recommendations regarding further implementation can be made about the interventions presented.

The themes representing the children’s preferences for support were largely based on articles from the western world (e.g. Europe, the United States and Australia), and one article from Iran. This highlights the need for more studies from other parts of the world. However, the articles that were included in this review were from several different countries, involving children with different ages, genders, and parents experiencing a variety of illnesses. The preferences for support seem to have more similarities than differences regarding countries, culture and parental illness. This should contribute to the transferability of the findings to various contexts.

Despite the comprehensive literature search conducted for this study, this review is unable to give a complete picture of children’s preferences for support and which interventions proved most useful for children as next-of-kin to a parent having an illness or disability. However, this review has identified an urgent need to identify these children’s needs and preferences for support and further develop community-based supportive interventions.

Conclusion

This review has presented supportive interventions from community health and social services for children of different ages who are next-of-kin to a parent who experiences illness or disability and has highlighted the importance that these children should receive support according to their preferences. This insight, informed by the children’s own voices, is essential if community-based services are to be developed for and linked to this population. If their needs are not met, they are at risk developing mental, social and behavioural problems, which might impact education, social opportunities and employment prospects.

Relevance to clinical practice

The results indicate that children want to be recognized as next-of-kin. According to the Convention on the rights of the child [6] children are recognized as vulnerable with a special need for protection and support, but they have the right to be given information and involved in decisions that concern them [6]. However, previous research has identified that parents and professionals are reluctant to talk with children about parental illness, due to a lack of knowledge around what to say, a fear of upsetting the child or making things worse, and the belief that the child is not mature enough to understand [56]. Children who grow up with parents experiencing a mental or somatic illness or disability experience a range of concerns—including conflict-filled family interactions, poorer parental functioning and neglect—and are at higher risk of developing mental, social and behavioural problems [57, 58]. These risks may be mitigated if children in these challenging situations are offered support, predictability and thus security. As results from the current review show, there are a variety of supportive interventions that could be offered within the community, which could benefit children as next-of-kin and which are in line with their expressed needs and preferences.

As noted earlier, community nurses work extensively with children and their families around the world [15] and are therefore well-positioned to do this work. In Norway, the PHNs meet a substantial number of children through their work in the health centres and school health services, where they have the responsibility to promote health among children [16, 17]. The PHNs play an important role in discovering early development of health problems among young people and can initiate necessary referrals to other authorities. As such, PHNs should be aware of the children who are their parents’ next-of-kin and have a duty to protect these children. Meeting children’s special needs via supportive interventions, in line with those identified in the current study, may be regarded as an important and appropriate measure in health promotion and illness prevention. According to the International Council of Nurses’ framework [59], a nurse acts in an advocacy role to protect human rights and questions violations of client in accordance with jurisdictional and the ICN. Even though nurses work to change policies, and health care professionals are expected to support children, they do need training and expertise to do this in an evidence-based way, to not cause any harm.

The articles in this review described interventions that dealt with knowledge provision, designed as education programmes for the child and/or the whole family. In both the child- and the family-centred interventions, children primarily wanted knowledge—specifically, knowledge about the parent’s illness—as well as communication, recovery planning and predictability. PHNs are effective information and education resources for patients who need assistance around coping with changes in health. Indeed, their professional responsibilities involve recognizing opportunities, providing guidance and educating individuals, families and communities—moreover, they have the ability to tailor teaching and learning strategies to the needs and characteristics of these children and their families [59].

To summarize; first all children as next of kin have the right to be identified, not only those whose parent is treated within specialized health-care. Thus, national legislations need to be adapted accordingly, suggesting which authority should have the responsebility for the children as next of kin. Secondly, the authorities should provide the appointed professionals with relevant guidelines, knowledge and methods needed for approaching children with adequate questions to identify those in need of support. The PHN working in different arenas in the community, such as at health service centres or schools could be one central profession whose role is it to identify children in need for support, for providing some aspects of support, or referring the child and parents for further support. Depending on whether a child is caring about a relative or caring for a relative [3] the need for support will vary, and if more complex needs are identified, interprefessional collabortation within and between authorities might be needed. Supportive interventions should preferable be evidence-based and they need to be evaluated, both on individual and group level.

Identification of research gap

In this scoping review, no articles were identified that involved supportive interventions in relation to living with a parent with a disability. The support preferences and needs of children up to 10 years of age were not reported in the articles that focused on preferences and needs; moreover, the structure of the interventions for children and for families had different approaches and mixed effects, depending on the outcome measures used. Future studies should focus on 1) how to identify these children in the community, 2) children who have a parent with a physical or psychological disability, and 3) the youngest children. Moreover, more studies are needed which use instruments and methods that are comparable, as well as long-term interventions and follow-up/evaluation studies.

Availability of data and materials

All data generated or analyzed during this study are included in the article. The earch strategy s is available from https://hdl.handle.net/11250/2688211

Abbreviations

PHN:

Public Health Nurse

PRISMA:

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

IMRAD:

Introduction - Method – Results – and – Discussion

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Acknowledgements

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Funding

This work was supported by the Norwegian Regional Research Foundation, grant no. 297073. The funding body had no role in the design of the study, nor in the data collection, analysis, and interpretation.

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Conceptualization: AKMS; Formal analysis: AKMS, AAC, TS; Methodology: AKMS, AAC, EO, TS; Writing – original draft: AKMS, AAC, EO, TS; Writing – review & editing: AKMS, AAC, EO, TS. All authors have read and approved the manuscript.

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None of the authors declare any conflict of interests. This article is part of the project Public Health Nurse as responsible for children who are next-of-kin to an ill parent in the community - a preliminary project funded by the Regional Research Fund – Inland.

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Steffenak, A.K.M., Anderzén-Carlsson, A., Opheim, E. et al. Community-based support for children who are next-of-kin for a parent experiencing illness or disability – a scoping review. BMC Health Serv Res 21, 1250 (2021). https://doi.org/10.1186/s12913-021-07270-x

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Keywords

  • Child, Children in community health
  • Intervention
  • Next-of-kin
  • Patient preference
  • Social services
  • Support