Exploring opportunities for holistic family care of parental caregivers of children with life-threatening or life-limiting illnesses

Abstract

Life-threatening and life-limiting illnesses in children have profound implications for all family members, many of whom experience unmet health and support needs. Guided by literature on family-centered care and an Interpretive Description methodology, qualitative focus group interviews were conducted with 18 parental caregivers and health care and support providers to explore family experiences and identify care and support needs across the illness trajectory. Data analysis resulted in three themes related to parental participation in children’s medical care, parental and familial psychological well-being, and social support needs. These inter-related themes reflect the complex nature of family life with childhood illness, highlighting families’ holistic needs and how children’s physical and psychological care is intertwined with the psychological and social well-being of the family system. Additionally, the findings revealed the significance of communication to parental caregivers’ hope, coping, and well-being. The findings add depth to existing literature, and identify opportunities for addressing families’ unmet needs, with specific attention to the role that social workers can play in facilitating family-centred care to promote effective support of parental caregivers. As such, the findings emphasize the important contributions that social workers can make within health care teams and in educational settings to optimize parents’ ability to care for ill children while maintaining family functioning and well-being, and as advocates for social and policy change.

Keywords

Family caregiving holistic family focus group social work practice interprofessional working

Introduction

Exact diagnosis rates of life-threatening and life-limiting illnesses [LTIs and LLIs] among children are difficult to determine, but approximately 2,400 deaths occur annually in the pediatric population in Canada, often due to illness (Statistics Canada, 2019). In the United States, LTIs and LLIs contribute to many of the approximate 45,000 pediatric deaths annually (Heron, 2018; Institute of Medicine, 2015). Common conditions include malignant tumors, congenital malformations and disorders, and chromosomal abnormalities (Statistics Canada, 2019). Despite the significant number of deaths, treatments for childhood LTIs and LLIs are being developed and improved, increasing the likelihood that affected children will live with complicated health needs and uncertain illness trajectories. Many families, therefore, face profound challenges and devastating consequences of childhood LTIs and LLIs that require effective care and support if disruptions to family functioning and individual and familial well-being are to be minimized (Fullerton et al., 2017; Steele, 2016; Whiting, 2014).

Numerous impacts of childhood illness on families have been documented, especially those faced by parents. Children’s diagnoses and treatment often introduce complicated emotions for parents such as fear, guilt, disbelief, sadness, loss, grief (Kearney et al., 2015; Koch and Jones, 2018; Lazzarin et al., 2018), and relentless feelings of “helplessness and abandonment” due to loss of control (Collins et al., 2016: 955). Such feelings can be accompanied by stress, anxiety, depression, and social isolation (Brehaut et al., 2009; Koch and Jones, 2018). Additionally, parents frequently experience disruptions to work and life routines due to caregiving activities, medical treatment, and intense concern for the child and other family members (Lane and Mason, 2014; Mooney-Doyle et al., 2018; Steele, 2016; Whiting, 2014). The new caregiving role requires parents to become the “everyday instrumental care provider, medical and financial decision-maker, advocate in education, advocate, nurse, relationship manager, care coordinator, communicator, transport service, insurance and financial manager, and typical parent” (Koch and Jones, 2018: 3). Thus, parents are thrust into a role that requires tasks beyond those anticipated for parenthood (Doherty et al., 2009; Rempel et al., 2013; Steele, 2016) including complex medical care (Collins et al., 2016; Whiting, 2014). Caregiving often becomes parents’ most important role, consuming daily life and overshadowing other roles.

Childhood illness and caregiving can negatively affect relationships within and outside of the family. Parents of children with LTIs report strained relationships with partners and healthy children, leaving them feeling “torn, guilty, overwhelmed, frustrated, afraid, exhausted, and heartbroken” (Mooney-Doyle et al., 2018: 210). Furthermore, absences from work, children’s care needs, and being bound to the home due to the child’s fragility, medical regimes, and equipment commonly disrupt parents’ external relationships. Accordingly, parents experience few opportunities to socialize with family and friends (Pelentsov et al., 2014), resulting in social isolation, disconnection, and loneliness (Eatough, 2013; Nicholas et al., 2009). Relationships are also hindered by parents’ perceptions that others do not understand their circumstances and that they are a burden (Collins et al., 2016; Pelentsov et al., 2014). Consequently, parental caregivers frequently find themselves without the benefits of social relationships during immensely challenging times.

However, hope is described as a crucial psychosocial resource that sustains health, well-being, and coping in family caregivers of children with LTIs and LLIs (Author, 2014, 2018; Kylma and Juvakka, 2007; Salmon et al., 2011; Smith et al., 2018). Parental hope is strengthened by the positive attitudes and practical help of extended family members (Amendolia, 2010), improved child health, having faith, and parental resources (Kylma and Juvakka, 2007). In contrast, professionals’ negative evaluation of child health, pain, uncontrolled symptoms, and parental fatigue have deleterious effects (Bally et al., 2018). Thus, social interactions with health care providers and others significantly influence parents’ navigation of their child’s illness and maintenance of hope.

While some positive outcomes are reported, there is evidence that families of children with LTIs and LLIs have a barrage of unmet support needs when engaged with the health care system. Although family-centered care is widely adopted to guide health and supportive care in many circumstances (Åstedt-Kurki, 2010; Foster et al., 2013; Kaakinen et al., 2018), additional efforts towards its integration can enhance care and support for children and their families. Advocacy for family-centred care and identification of strategies to support coping and well-being are crucial because some parents struggle to clearly identify and prioritize their needs, and social inequities can impose barriers to accessing essential care and support (Raouafi et al., 2018). In conjunction with interprofessional teams, social workers are optimally positioned to provide and advocate for holistic care for families through their capacity to foster collaboration, therapeutic communication, and mobilize supportive care resources and interventions.

Theoretical lens

Family-centered care aims to address psychosocial, emotional, and physical needs of individuals impacted by illness and their families through recognition of the family as a system and the context of experience (Foster et al., 2013; Jones et al., 2014; Kaakinen et al., 2018). This philosophy of care reflects Family Systems Theory which frames all members within a family as interdependent (Broderick, 1993). In the case of childhood illness, family members’ previous roles and responsibilities can be affected by a shift in focus to the ill child’s care. Consequently, daily life is often disrupted for all members, altering balance within the family unit (Bowen, 1974). Changes in family routines have various implications, and parents can be burdened by trying to balance caregiving with responsibilities such as work, care of other children, domestic tasks, or social activities. Family well-being is threatened by the stressors imposed by a child’s illness when it leads to delineation of more rigid boundaries between family and non-family members (Bowen, 1974). This involves increased focus on the family unit and decreased openness to external interactions which can have psychosocial and practical implications. Conceptualizing the family as a system, facilitates understanding of the wide-ranging impacts of childhood illness on all members and the external systems with which families interact. This lens reinforces the importance of attending to the needs of the family as a whole, and individual needs, to best support family functioning and well-being.

Aims of the study

Opportunities for improved, evidence-informed family-centered care were examined through qualitative focus groups with parents of children with LTIs and LLIs, and health care and support providers involved in the care of such families. The guiding research questions were: a) What are the psychosocial needs of parents caring for children with LTIs and LLIs?; b) What do parents feel would support optimal family well-being?; and, c) What are current barriers to appropriate care and support? In exploring these questions, psychosocial concerns are identified along with strategies that can be integrated into evidence-informed holistic care within clinical care and support settings for families of children with LTIs and LLIs. Additionally, opportunities for increased interprofessional collaboration to meet families’ multidimensional needs are highlighted.

Methodology and methods

An Interpretive Description (Thorne, 2016) methodology was adopted with a focus on generating knowledge about complex clinical phenomena that can be applied in health care and support practice. This approach emphasizes: prioritization of experiential knowledge and subjective perspectives; generation of rich, contextualized knowledge with a relatively small number of participants or within one setting; and, rigorous data analysis and interpretation that produces meaningful findings (Thorne, 2016). This approach informed exploratory focus groups conducted with parental caregivers and health care and support providers, which were one component of a larger study aimed at developing a support intervention for family caregivers of pediatric oncology and palliative care patients. Focus groups generated in-depth, experiential knowledge about families’ care and support needs and ways to address them, which complemented data gained from an advisory panel, metasynthesis of qualitative research (Bally et al., 2018), and Delphi study (Smith et al., 2018).

Sample and data collection

Following institutional ethical approval and operational approval from the health region, persons with relevant experiences were identified by an advisory committee of parents, community members, and health care providers and invited to participate in focus groups. The purposive sample included: parents who were English-speaking, 18 years of age or older, and the primary caregiver for a child aged between two weeks and 10 years, from rural or urban areas of the region. Health care and support providers from the publicly funded health care system currently caring for children with LTIs and LLIs were also recruited. The study was explained and those interested were scheduled to attend one of four focus groups. The 18 participants included 16 women and 2 men, of which 7 were parents (6 mothers and a father), 5 registered nurses, 2 physicians, a social worker, a child life specialist, and 2 community support staff from Ronald McDonald House Charities, an organization that supports families of children who are hospitalized or receiving outpatient care.

Prior to each focus group, a researcher explained the study aims and ethical issues, and obtained written consent from all participants. Along with learning about participants’ experiences, an objective was to obtain feedback on a draft of the support intervention being developed through the larger study. Accordingly, focus groups were semi-structured and guided by open-ended questions about family needs, supports, and eight coping processes identified in the other study components (Bally et al., 2018; Smith et al., 2018). Focus groups lasted between 45 and 80 minutes and were audio-recorded. Groups were formed based on participants’ availability, and each group included a mix of parents and health care and support providers who shared rich data reflective of a range of experiences (Thorne, 2016) that illuminated positive and problematic aspects of support for families of children with LTIs and LLIs. While power differences can be a concern in focus groups with participants of varying status, the nature of the topic lent itself to prioritization of parents’ experiences and the participating clinicians deferred to them to lead the discussions. Also, participating clinicians were not providing care to children of the parents in attendance.

Data analysis and rigor

Analysis aimed to transform focus group data through rigorous examination and interpretation into meaningful findings that go beyond literal explanation to provide a holistic understanding of the phenomenon (Thorne, 2016). The iterative analytic process involved close readings of verbatim transcripts to develop preliminary understandings. Subsequently, line-by-line coding was completed by the second author to identify categories, patterns, and relationships amongst the data. Constant comparative analysis supported examination of data relative to other pieces of data to continuously conceptualize related ideas into increasingly coherent relational patterns while considering similarities and differences (Thorne, 2016). To facilitate movement from description to abstraction of analytical ideas, the second author discussed coding with two other team members on four occasions. The coded data were organized thematically to highlight prominent experiences and support needs, along with variations. The computer software program ATLAS.ti© supported organization, analysis, and storage of the data.

Quality of the data and findings was maximized in several ways. Credibility of the data was ensured by audio-recording and verbatim transcript of the focus groups (Guba and Lincoln, 1994). Confirmability of the findings was established through rigorous analysis involving several readings of the data, ongoing documentation of emerging themes, and discussion of themes and interpretations among team members on multiple occasions (Guba and Lincoln, 1994; Thorne et al., 2004). Inclusion of diverse participants bolstered representative credibility (Thorne, 2016).

Findings

The themes relate to parental participation in children’s medical care, parental and familial psychological well-being, and social support needs. These inter-related themes reflect the complex nature of family life with childhood illness, highlighting families’ holistic support needs and how children’s physical and psychological care is intertwined with parents’ psychological and social well-being. The themes and illustrative quotations offer insight into families’ experiences, evidence of effective coping strategies, and opportunities for improved family-centered care.

Addressing physical health needs: Parental participation in medical care

One aspect of caregiving experiences related to parental involvement in the medical care of children in clinical settings and at home. Some participants believed that opportunities for such involvement were limited, while others indicated that their wish to participate had been granted. One mother described her feelings of empowerment at having learned about the medical equipment involved in her child’s treatment and capacity to address minor issues. She stated, “then I’m not just a passive lump sitting there watching people … maybe, [the line] just had a kink. I could figure that out and I felt good about it, like ‘I have a job, I have a role here’” (Parent, FG2). Another parent shared similar sentiments about working with local health care providers to ensure that her daughter received palliative care at home in their rural community rather than in the city. Efforts toward parental participation were valued for the active role it allowed parents in meeting their children’s care needs.

However, opportunities for parental participation within the clinical setting were reportedly often overlooked. One health care provider described how a mother expressed appreciation of being able to stay in the operating room with her child until sedation set in when receiving surgery in another province, but that a request to do the same in her home province had not been accommodated, stating:

I felt really sad for her because I thought, that little thing of listening to [the parent] and saying ‘You know what? That is important. That’s something we can do. Let’s work towards getting that integrated into our policy so that you feel better.’ I think that it would instill some hope that ‘Yeah, my journey really does matter and there’s a purpose for it, or that I can make care here better’ (Nurse, FG1).

This scenario highlights an example of how communication, advocacy, and policy regarding parental participation in children’s care could be improved which would benefit child and parental well-being.

Recognizing mental health needs: Parental and familial psychological well-being

Another common need pertained to psychological support for parents and other family members which influenced their ability to engage in caregiving and practical tasks. Some parents did not receive effective counseling or support referrals. As one participant explained:

When [child] was in [NICU], I didn’t actually talk – I don’t, truthfully, remember having any conversation with a social worker. If there was, I should – it could have happened, but it was obviously not somebody that I felt connected to. … then we got home and we had a social worker, very limited contact with her apart from setting up some respite (Parent, FG3).

Other parents related similar experiences and concerns that counseling and support were not necessarily accessible to all family members. Health care providers also reported insufficient support for the whole family in some cases. One participant explained the need to advocate for services that addressed parents and siblings’ psychological well-being:

One of the things that we’re missing is the professional support for the family. For example, I’ve had numerous chronic illness families … where I’m hearing about behaviours, about the siblings or some other things that are going on with the families. I’m thinking these folks need some psychological supports, how do I get that for them, for the family, for their own individual needs? (Child Life Specialist, FG1).

This participant went on to emphasize a pressing demand to better integrate psychological services for families into routine care because such support was often difficult to acquire and focused on the patient. Thus, the model of care described by participants was thought to be too narrowly focused on patients’ physical and psychological needs, rather than addressing the psychological well-being of all members of the family system.

Participants also indicated that existing psychological supports were not necessarily appropriate and accessible given families’ circumstances, as parents did not want to take time away from their child to access individual counseling. Participants advocated for greater efforts to support the psychological well-being of parents and children within care settings, as explained by one health care provider:

There’s so much stress that families face in those first couple months of diagnosis and

then on through their journey. But what I found really, really helpful as an intervention is integrating a child life specialist at all levels of care, from those simple little daily treatments, painful procedures or whatever … Really utilizing them for that positive self-talk that happens with the moms and dads and the children together … [They] practice mindfulness, distraction, and positive self-talk, so [they] really integrate those ideas into everyday practice (Nurse, FG1).

Thus, value was placed on supporting parents and children psychologically in simple, convenient ways while accessing health services. Such efforts were perceived as promoting development of coping strategies and overcoming barriers to counseling related to access and time.

Another dimension of psychological well-being broached by participants related to communication with health care providers. Parents expressed that how information was conveyed affected their outlook on the child’s illness. One parent related:

[The doctors] were honest but empathetic … You could tell they were sad to tell us this and they weren’t defensive about anything, they were very open and that was very helpful to help maintain some positivity for me, truthfully, because yeah, they sometimes give us bad news, but it’s the manner that it’s delivered (Parent, FG4).

This participant reinforced how influential interactions with health care providers can be on parental well-being. Others echoed the preference for communication of information in a clear, caring way, enabling parents to recognize the severity of the child’s condition and health care providers’ empathy and commitment to navigating the illness trajectory with the family. This sentiment was also described as providers adopting a ‘we’ or teamwork approach, which allowed parents to maintain some positivity and hope despite the child’s prognosis. In contrast, negative, unsupportive interactions left parents feeling distressed and alone.

Participants indicated that effective communication should include opportunities to ask candid questions. One parent indicated not having such a chance:

We wished we could have had … an opportunity to have one-on-one candid conversations with our doctors that excluded our child so we can ask questions, because he was seven at the time. He was fully aware of what we were saying and what we were talking about. … Not to keep him out of it, but just so we could ask maybe more blunt questions or more questions that we really wondered about (Parent, FG3).

As described, communication between health care providers and families was complex because it required negotiation of sensitive topics and when to include the child. Despite not wanting to exclude her child from general discussions, this parent perceived an inability to explicitly discuss the illness trajectory because her child was always present during interactions with physicians.

Advocacy for positive and open communication among parents and health care providers was entrenched in broader discussions of the need for enhanced care for families of children with LTIs and LLIs. Several participants were concerned that health care has become increasingly instrumental at the expense of caring for the whole person. One nurse summarized this sentiment in a call for renewed focus on holistic well-being:

I think our nurses, unfortunately, are not practicing [holistic care] on a regular basis, particularly in acute care … It’s a matter of changing this thought of nursing, that it’s not only physical care. It is emotional, spiritual, psychological. … You have to go in the room with the intent that ‘I’m not only going to care for this patient and family, the physical needs, but I’m going to ask them about their beliefs about health and what we can do better, if they need spiritual care’ (Nurse, FG1).

Thus, this participant advocated for holistic, family-oriented care, capturing issues raised by other participants related to inadequacies in psychosocial support, opportunities for parental involvement, communication, and the need for interprofessional collaboration.

Facilitating social well-being: Identification of social supports

Participants emphasized that access to various forms of support from individuals outside the immediate family was beneficial to meeting family needs and maintaining hope across the illness trajectory. However, engaging with others external to the family could be challenging for parents due to children’s care needs and the sensitivity of childhood illness. Some parents described wanting to isolate themselves to avoid awkward interactions, as one explained: “You’re just on a real rollercoaster as a family emotionally … it just felt too overwhelming to go out and face the world and have to talk about it out loud” (Parent, FG3). Similarly, others indicated that interactions outside the family caused added distress, instead of being beneficial, with one parent stating a desire to “duck and run” to avoid difficult interactions with well-meaning acquaintances who were unsure of what to say (Parent, FG2). Thus, families sometimes chose to isolate themselves to avoid awkwardness and upsetting questions, meanwhile limiting opportunities for supportive interactions and assistance.

One way that families sought to manage social interactions with friends and extended family was via the Internet. For example, one nurse described how a family created a social media page where:

They did updates and very gently said to people, you know, ‘We appreciate your concern but we really want, if you need an update on progress, would you refer to the [social media] page,’ so that they’re not constantly telling their story over and over and over again. And then, people can write their support – and the parents can decide whether or not they want to read that today, if they need that emotional support or not. It was a really good outlet for them to progress the journey in a way that people could have answers without having themselves get overwhelmed (Nurse, FG1).

This strategy enabled parents to control the timing of communication with others, shielding themselves from uncomfortable interactions while keeping connected to their network.

Participants also discussed issues with asking for and receiving assistance. Despite potential benefits, parents identified hesitation in asking for support, often not wanting to impose on others. One participant explained the complexity, as well as the benefits of external support:

[I had] to get to that point, to let someone come in and see your dirt, see that you don’t have everything all [organized], you know? But, I got there and had a good support group that came in, no agendas whatever, got flowers, something to eat. … But then also, to know to ask (Parent, FG2).

This parent suggested that fear of being judged by others posed a barrier to seeking support with everyday activities, as did her initial lack of awareness that assistance would be valuable. However, once support was in place, she was able to focus time and energy on her child.

Another mother shared an experience of seeking support after struggling for some time:

It was two and a half years into [my daughter’s illness] when I finally reached out to somebody. She was finally allowed to start eating again and she didn’t want anything from the hospital and all she wanted was spaghetti and sauce. It’s like, ‘Where am I going to get spaghetti and sauce?’ … Finally [I remembered my ex-husband’s cousin had sent supportive emails] … and I phoned her and I just burst into tears, and she’s like, ‘First of all, I just want to say thank you so much for phoning, what can I do to help you?’ … She brought like just this basket of stuff, and it’s like … ‘That’s all I needed to do was pick up the phone and call!’ (Parent, FG2).

Accordingly, after years of hesitating to seek support and overextending herself, this parent expressed relief that she reached out for help.

Participants believed that parents should be encouraged to identify supports and connect with others who understand their circumstances, with health care and support providers being well-positioned to make such recommendations. Along with support from extended family and friends, participants believed that parents of children farther along in the illness trajectory could offer support as ‘peer mentors.’ One parent explained:

We actually did meet someone at the cancer center with a similar disease and that was definitely a motivator, and we even pointed that person out to [our child] and said ‘Look it, he’s now this old and he’s done and he did this and that.’ (Parent, FG3).

Another participant echoed this idea: “I find even parents who have children with very differing reasons for being on the unit, they support each other just through that experience of [staying at Ronald McDonald House]” (Support provider, FG2). However, one parent cautioned that differences in experiences or negative outcomes could diminish benefits or create added distress, as meeting a family whose child had died was very traumatic for her. Privacy concerns were also noted as a barrier to connecting families for support purposes. Nonetheless, participants suggested that health care and support providers identify ways to formally or informally connect families, such as through family activities in health care and support settings like stretching, art projects, or cooking classes that could lead to connections with peers.

Discussion

The findings highlight the multidimensional and interconnected nature of family well-being when a child who has an LTI or LLI, as families navigate the physical needs of the child along with the psychological and social needs of the family system. The findings illuminate specific needs that can go unrecognized by health care and support providers, detrimentally affecting coping and well-being. While similar needs are documented in existing research (Lane and Mason, 2014; Mooney-Doyle et al., 2018; Steele, 2016; Whiting, 2014), the findings offer deeper insight into family experiences and examples of how comprehensive, family-centered care can be enriched to improve family well-being. Application of Family Systems Theory illuminates the benefits of support for shifting roles within the unit and maintaining relationships beyond the family to facilitate family well-being. Therefore, the findings reveal opportunities for social workers to play a significant role within interprofessional care teams to ensure that holistic care is available to pediatric palliative and oncology care patients and their families.

The first theme reveals how efforts to support parental participation in a child’s care can generate empowerment by helping parents to establish control over some aspects of the child’s condition, despite an unpredictable trajectory. Parental involvement in the child’s medical care has benefits for parental and child well-being including minimizing children’s distress, meeting simple care needs in a timely manner, and helping to quell feelings of powerlessness (Mooney-Doyle et al., 2018). Parental participation is especially important for children being cared for primarily in their homes. Although collaboration between parents and health care providers can have positive implications for children and parents, possibilities for parental participation can be overlooked when parents are unsure of how to become involved, do not feel comfortable broaching the subject, or do not feel empowered to participate (Davies et al., 2017). Social workers are well-positioned to recognize power differences between providers and parents, and support parents in overcoming barriers to self-advocacy for involvement in their child’s care. Specifically, social workers can foster dialogue with nurses and physicians about possibilities for education and involvement, and collaboratively advocate for policy changes to recognize the family as the care unit.

The second theme highlights the need for a more holistic approach to family care that attends to psychological and social dimensions of well-being, along with physical health. While such care is recognized as desirable, the findings suggest that effective physical care is not necessarily accompanied by appropriate psychosocial support. Particularly, there is a need for improved access to psychological services for all family members and sensitivity to their circumstances, as the child’s complex medical needs and treatment schedule can leave families with minimal time and resources to access psychological care outside of care settings. In collaboration with the health care team, social workers can initiate therapeutic conversations with families to identify unmet needs and obstacles to accessing psychological supports. Help with identifying formal and informal supports can facilitate the shift of parents’ responsibilities to others within or external to the family to ease the time burden and to better attend to psychosocial needs. Furthermore, adoption of a trauma-informed approach that is sensitive to the devastating implications of a child’s LTI or LLI diagnosis and prior trauma can guide supportive interactions that facilitate identification of parental and family needs and promote trust, empowerment, and self-advocacy (Levinson, 2017). Some family members might benefit from counseling on an individual and family basis as part of routine care, particularly during lengthy hospital stays. Social workers, in conjunction with other members of the care team, can integrate holistic care into clinical settings by initiating family-based activities that promote mindfulness and positivity.

A significant thread throughout the findings relates to communication and its centrality to parents’ caregiving experiences. Specifically, communication challenges arose during negotiation of health care, psychological support, and everyday social interactions. Interactions with health care providers were especially prominent in discussions of psychological well-being, with participants noting that the nature of such interactions influenced hope and coping. Existing research reinforces the importance of effective communication, reporting that encounters with providers can be stressful and have deleterious effects on both the provider and recipient, resulting in distress, anger and discomfort (Fallowfield and Jenkins, 2004). Although communication style should be tailored to each family, their circumstances, and stage in the illness trajectory (Foster et al., 2013), participants suggest that effective communication includes: active listening, building and maintaining trust, suspending judgement, focusing on the positive, showing kindness, maintaining hope, and finding a balance between forthrightness and empathy (Davies et al., 2017; Fallowfield and Jenkins, 2004; Mooney-Doyle et al., 2018; Orioles et al. 2013). Social workers can draw on their education to enact such communicative traits and encourage a collaborative, empathetic approach across the care team. Specifically, they can identify ways to minimize power differences stemming from social inequities that hinder egalitarian interactions and effective communication. Furthermore, emphasis should be placed on fostering communication that is honest, direct, and empathetic because this promotes understanding and hope amidst uncertain illness trajectories. Social workers can support such conversations by engaging children on some occasions so that parents can speak candidly with physicians.

Existing research identifies the benefits of social support to coping and family well-being (Bally et al.., 2014; Nicholas et al., 2009), but this research highlights the complexity of navigating interpersonal relations and requests for support. While extended family and close friends might organically fill support roles, some parents are uncomfortable with soliciting assistance (Hansen et al., 2016). Additionally, social interactions can be difficult because of the need to repeat sensitive information multiple times and the emotions raised. While health care and support providers cannot meet all of families’ support needs themselves, they can be valuable sources of information about how to navigate social interactions and support. Families can benefit from assistance with connecting with support services or simple recommendations to identify and access informal supports external to the family. Doing so can decrease stress, ensure family needs are met, and minimize caregiver burnout. Social workers can provide information about patient advocacy groups, foundations that support families of pediatric patients, and support groups. Furthermore, social workers can raise awareness of the detrimental impacts of social inequities on access to appropriate care and support including barriers related to power differences and insufficient material resources. Advocacy for financial supports can decrease financial burden and stress within the family unit and ensure that cost does not prohibit receipt of necessary health services including psychological support. Assistance with identifying sources of financial support, determining eligibility, and completing forms can be beneficial, as such tasks can overwhelm parents already facing challenging emotions (Pelentsov et al., 2015).

The findings also reveal that parents can appreciate guidance from health care and support providers on managing social encounters with acquaintances to avoid difficult conversations while minimizing social isolation. For example, e-mail or social media were reportedly useful for updating family and friends, similar to the use of blogs described by Hansen et al. (2016). Online communication offers a relatively accessible and convenient option that can be tailored to personal preferences. However, costs can hinder access, and some families could benefit from access to Internet services within health care or support settings, such free Wi-Fi or a computer room. Such supports also enable access to online support groups and informational resources, although assistance can be necessary, such as an orientation to computer use, adaptations for persons with disabilities, and guidance for information searching.

Finally, the findings demonstrate a need for increased development and use of support interventions with families of children with LTIs and LLIs. There are few pediatric palliative care interventions at the present, and social workers’ views should be included alongside those of family caregivers and other health care providers to inform holistic, family-centered supportive tools. Also, social workers are well-positioned to implement family assessments and interventions that promote functioning of the family system while navigating care of a child with an LTI and LLI. Thus, social workers practicing in pediatric settings should support development and implementation of adaptable, creative, family-centered support interventions to promote family well-being including those that facilitate adaption to their changed circumstances through shifting roles within the family unit and access to necessary supports.

Despite the value of our findings, the nature of the sample imposes some limitations. Namely, most participants were recruited from one health region in a mid-Western Canadian city, however, two participants were from Atlantic Canada. Although diversity was sought, the majority of the sample were women (six of seven parents and all of the nurses). Future research should include families in different care settings, fathers, and diverse health care and support providers. Nonetheless, the findings are valuable in providing a nuanced, deeper understanding of common experiences and support needs of families of children with LTIs and LLIs.

Implications & conclusions

This research provides enhanced understanding of families’ experiences and highlights specific strategies for evidence-informed care of families of children with LTIs and LLIs. Drawing on the findings, social work educators in classroom and practical settings, along with social workers practicing in pediatric health settings, can champion family-centered care principles that promote collaboration between families and health care and support providers to meet often-neglected psychosocial needs. Teaching about, and facilitating opportunities for parental involvement in their child’s care and integration of psychological care for all family members within clinical settings are two specific examples that can significantly benefit parents and children’s well-being without substantial resources. Along with health care providers, social workers can advocate for, and offer anticipatory guidance to parents with communication, both with health care providers and in social situations. Facilitating development of strategies for communicating effectively and soliciting support can contribute to improved interactions, coping, and avoidance of burnout and social isolation. Finally, social workers in educational and practice settings can recognize and raise awareness of the impacts of social inequities on access to appropriate care and support including those related to power differences, barriers to self-advocacy, and inaccessibility of services. Social workers can advocate for policies and procedures at government and institutional levels to enhance specialized family care. This can include funding for well-developed, accessible pediatric palliative care, appropriately-focused continuing education for practicing social workers in interprofessional settings, and the development of lasting, formal, and well-integrated working relationships with community programs such as hospice care, Ronald MacDonald House, and home care.

Advocacy and collaborative efforts to overcome barriers to parental involvement, access to appropriate psychological care, and communication can ensure appropriate health care and support for families of diverse backgrounds. Therefore, within health care teams and in educational settings, social workers can play exceptionally important roles in optimizing parents’ ability to care for ill children while maintaining family functioning and well-being, and as advocates for social and policy change.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was supported by a Royal Bank of Canada Nurses for Kids Community Development Program grant.

ORCID iD

Jill MG Bally

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