‘Being a presence’: the ways in which Family Support Workers encompass, embrace, befriend, accompany and endure with families of life-limited children.

Bernie Carter

University of Central Lancashire, UK; Alder Hey Children’s NHS Foundation Trust, UK

Maria Edwards

Sheffield Teaching Hospitals NHS Foundation Trust, UK

Anne Hunt

University of Central Lancashire, UK

Abstract

Children with life-limiting and disabling conditions are surviving longer than previously but many continue to require palliative and supportive care usually at home. Home-based care can put family life under considerable strain as parents care for their child’s complex, often unpredictable, continuing care needs. Rainbow Trust Children’s Charity aims to bridge gaps in services for children with life-threatening or terminal conditions by providing Family Support Workers (FSWs).The study used a range of methods (surveys, interviews and ethnographic observation) approach to explore key aspects of the work of the FSWs. Surveys.The target population was families with a child with complex, life-threatening or terminal conditions receiving care by FSWs. Fifty five families (including12 bereaved) and 39 children aged 2-18 years participated. Thematic analysis revealed how the FSWs became a presence in families’ lives in three main ways: (1)Encompassing and embracing families through supporting needs and promoting resilience; (2) befriending and bonding through developing knowledge, trusting relationships and a sense of closeness; and (3) accompanying and enduringby ‘being with’ families in different settings, situations and crises and by enduring alongside the families. The study demonstrated the fundamental importance of workers who are able to provide aspects of support that is usually not provided by other services.

Keywords

Chronic illness, complex care, family, palliative care, support

Background

Despite variations between countries, continuing improvements in medical care means increasing numbers of children with life-limiting and disabling conditions are surviving longer (Burns et al. 2010, Fraser et al. 2012)though many will still require palliative and supportive care sometimes over extended periods (Downing et al. 2012). This diverse group of children have complex, often unpredictable, continuing care needs and may require technological intervention and/or palliative care for years (Department of Health 2011). Rather than care in hospital, current emphasis is on home-based care (Ganset al. 2012, Woodgate et al.2012) and this is usually the family’s preference (Spierset al. 2011), enabling greater control of their lives and treatment routines (Carter et al. 2012, Hansson et al. 2011). However, caring for a child with complex, continuing and /or palliative care needs at home has physical, psychological, emotional, social, spiritual and environmental impacts upon children and their families (Hunt et al. 2003, Moore et al. 2010).

Family life tends to revolve around technology and routines of care, resulting in constant vigilance and disrupted sleep (Heaton et al. 2005). Alongside parenting, parents perform many roles including managing their child’s condition, making the complex judgements, undertaking clinical procedures, organising services and advocating for their child (Dybwicket al. 2011, Kirk et al. 2005). Unsurprisingly, parents of children with complex, continuing care needs can experience fatigue, depression, isolation, marginalisation and abandonment (Carter et al. 2012), financial problems (Burton & Phipps 2009, Galbraith et al. 2005, Houtrowet al. 2008), difficulties in combining caring and paid employmentLoomanet al. 2009)and medicalization of the family home(Carter et al. 2012,Moore et al. 2010). Sibling’s mental health and well-being can also be affected (MoysonRoeyers 2012, Newton et al. 2010, Redshaw & Wilson 2012, Welch et al. 2012).

Whilst parents attach importance to home-based care(Carnevale et al. 2008, Carter et al. 2012, McCann et al. 2012, Thomas et al. 2011), support services are not always readily available (Heath et al. 2012, Houtrowet al. 2011, Winitzer et al. 2102). Only a minority of families can access regular respite care (Grinyer et al. 2010, Neff 2009) or comprehensive palliative care (Bradford et al. 2012). Where statutory services are non-existent or unable to meet demand, or (outside of the UK) where children may beuninsured (Jeffrey & Newacheck 2006, Szilagyi 2012), gaps occur in support networks (Bradford et al. 2012, Nageswaranet al. 2012); some gaps are filled by charitable or ‘third sector’ organizations.

An independent research team was commissioned to conductan evaluation of the home care services of the Rainbow Trust Children’s Charity (RTCC); a UK based charity supporting children with life-threatening or terminal conditions and their families. In this paper we report an analysis of thethe work of Family Support Workers (FSW) from the view of the children, young people and their families. RTCC has eight teams in England, each managed by a qualified professional who undertakes the initial family assessment and then allocates a trained FSW, usually on a geographical basis, to work with the family. Unlike other services which may provide additional nursing-oriented help, the FSW provides practical, non-nursing support to the family such as babysitting, help with shopping and transport to/from hospital. FSWs are not registered health professionals but are selected for their skills and experiences relating to children and families. RTCC provides comprehensive, relevant training (e.g., manual handling, first aid, record keeping and bereavement) and FSWs are supported, supervised and mentored by a Family Support Manager.

Figure 1. Older child’s drawing: ‘what I do with my family support worker’.

Methodology and Methods

Aim

The study reported here aimed to explore key aspects of the work of the FSWs in caring and supporting families from the families’ perspectives.

Methods

The study reported here used a range of methods to understand the way in which the families viewed the RTCC service. The target population for the survey was all families across all eight teamswho were either receiving care or who had received care in the previous year (estimated to be 90 bereaved and around 700 non-bereaved families) with contact ranging from minimal to substantial and on-going. Methods used were a) survey, b) interviews and c) ethnographic observation. These methods were used concurrently. Methods (a) and (b) engaged families across all teams, whereas method (c) focused on four of the teams (n=2, south; n=2 north) purposively selected to include children with receiving on-going care for a range of conditions including those receiving palliative care.

Surveyswere designed for children, young siblings, young people, older siblings, non-bereaved and bereaved families across all eight teams. Surveys for younger children mainly invited drawings or simple sentence completion(e.g., see Figures 1 and 2);the remaining surveys used a combination of closed (e.g., Likert scale,such as ‘how do you rate the care provided [by FSW] for your child at home’?) and open questions (e.g., in what ways have the RT workers helped either you or your family?; What would you like to change about the support you receive?). Survey packs contained an information sheet, survey, pre-paid envelope, and crayons and stickers for the children. Completed surveys were returned directly to the investigators.

Telephone interviews were undertaken with participants who had completed the survey and who agreed to take part. Within these narrative interviews, participants talked about their experience of Rainbow Trust; prompts were used as needed. Open questions were used to elicit the stories, for example, the children were asked ‘what sorts of things do you do with your [name of] worker?’

Ethnographic observation of family life during FSW’s visits was undertaken and included informal, audio-recorded interviews and research activities with the family. Families participating in the survey self-identified as being willing to participate in the ethnographic visits. The activities included ‘family maps’ to facilitate the exploration of support structures, art work and drawings with the children and the use ‘magic wands’ to trigger children’s thinking about their FSW.

Figure 2. Child’s drawing: ‘what I do with my family support worker’.

Ethical issues

Approval was gained from the Faculty Ethics Committee, University of Central Lancashire. FSWs acted as gatekeepers to the families as they made the initial contact with the families. In order to avoid bias associated with purposively selection of families, the FSWs sent packs out to all families on their caseloads apart from those families judged to be particularly distressed or vulnerable (e.g. due to a particular crisis at the time of the study). The researchers had no direct contact until parents had given permission for release of their contact details. All participants received specific written information. Parents decided if their child(ren) could be approached to participate. Survey return was deemed to imply consent/assent for that part of the study. Ethical issues were conscientiously considered at all stages of the study, for example, ensuring families did not feel pressured either to participate or to focus on good aspects of the service. Another example of a concern was that parents might encourage a reluctant child to participate.In order to avoid problems associated with unintended researcher influence we adopted a highly reflexive approach to all stages of the study, taking particular care in how we approached data collection, engaged with families, and interpreted the data.

Data Analysis

Data analysis was specific to the different elements of the study. The field notes (observational data), audio-recordings (conversational interviews), narrative responses (survey) and activities data were transcribed and then analysed using thematic analysis (Braun & Clarke 2006). Visual materials (drawings, maps) were examined supported the analysis of text based data. Identifiers were removed and labels indicate the data source: Fam: family (where it is not clear which parent returned the survey); M: mother; F: father; C: child (sick/complex health care needs); YP: young person (sick/complex health care needs); S: sibling; and FSW.

Findings

Participants

Fifty five families including 12 bereaved familiesparticipated in the survey; of these, 22 participated in the telephone interviews. Thirty ninechildren and young people, aged 2-18 years participated in the survey(n=27 children, aged 2-10 years; n= 5 young people, aged 11-16 years; n=7 older siblings, aged 11-18 years).Of the 55 families, 13 participated in the ethnographic visits and we spent between 2 and 8 hours with each family.The response rate is discussed in the limitations.

Single and dual parent families participated as did families from a range of ethnic and cultural backgrounds. Some families had several children and others only one child. Some families acknowledged how friends and family could provide some support whilst other families talked of their isolation and lack of external familial support. Some families experienced parental ill health, relationship breakdown and other causes of social and emotional stress in addition to the stress of caring for a child with complex health care needs and/or disability.

‘Rainbow children’ - the children whose needs triggered the engagement with RTCC - faced considerable health care challenges with a wide range of diagnoses including leukaemia, cancer, degenerative neurological/muscular disease, metabolic, cardiac, and urological disease. Many had required repeated hospital admissions, often needing intensive/invasive therapy; some had conditions where things were gradually worsening or where the unpredictability of their illness meant that life was extremely uncertain. Some who had survived their acute illness were left with substantive residual effects of the illness or treatment. Despite treatment and interventions some required palliative care and their families continued to receive support and care from their FSW.

Early in the fieldwork it became clear that families were very positive about the FSWs; this triggered reflection and discussion amongst the research team. We examined our practice and ensured that we probed for shortcomings or negative experiences. However, despite our attention to this, such reports were not forthcoming even though families had the space and support to do this and the reassurance that this would not affect their care.

The ‘presence’ of Family Support Workers

The lives of families were often stressful and chaotic as noted in other studies(Woodgate et al. 2012) but the FSWs provided families with the chance to achieve some degree of normality.

All of the families talked of ‘before and after’ times. ‘Before’ represented the times before their child was sick and/or before their FSW started working with the family. Engaging with a FSW did not miraculously make everything better; children remained sick, some died. Families were still under pressure and had to deal with the everyday challenges of family life on top of the particular challenges of caring for a sick child. The FSWs provided practical, social and emotional support to the family and became a presence in families’ lives in three main ways: encompassing and embracing; befriending and bonding; and accompanying and enduring (see Figure 3).

Figure 3. The presence of family support workers (FSWs) in the lives of children and their families: key

themes.

Encompassing and embracing

The FSWs ‘encompassed’ the child and their family acting as a resource to mitigate the disruption they were experiencing. In our study, families talked of the overwhelming nature of dealing with their child’s illness and how “having an ill child is a different world”(M) and how “it’s hard to understand how much pressure you are under …. …thinking about what might happen, could happen”(F). Two sub-themes: ‘supporting families’ and ‘providing support through different stages’ are presented.

Supporting families in a flexible and individual way

For many families the demands of their child’s treatment and associated care needs were relentless and required forward planning (e.g. prepare/administer complicated feeds, travel to hospital). One mother explained:

“It’s 24 hours a day. No break from it at all. Never get a minute to just sit down and make phone calls. … I can’t put (daughter) down to prepare a meal. We live on takeaways. Like today (because FSW has been) I’ve peeled the potatoes this morning so we can cook and eat a proper meal” (M).

The impact of having a sick child on day-to-day life was inevitable. One exhausted mother explained how “being deprived of sleep makes you a different person”. Parents spoke of their situation as being very “isolating” and feeling “kind of desperate”(M) and “nearly cracking up”(M). Their FSW “saved” some families from being “in a state of crisis”(F); this was especially so for families receiving palliative care who highly valued the emotional support offered by the FSWs. FSWs adapted to families’ specific needs and were “very accepting of us and how we like to do things, how we are”(M). Families spoke of the flexibility of support in different settings (home, school, hospital, and hospice) and FSWs’ responsiveness to family need. One father explained “[when my daughter] had a major, major operation (FSW) dropped everything to be there”. When treatment “trapped”(M) families at home, FSWs helped and:

“….allowed us to have some type of normality instead of sitting at home on your own all the time. It was a chance to get out of the four walls… It was a real benefit to feel like a real family. You can feel ‘imprisoned’ in your own home”(Fam).

Families described feeling isolated from family and friends who either failed to understand their situation or found it hard to deal with:

“You lose a lot of friends when you have a sick child. You lose people quickly. … You can’t do social things anymore. You can’t go out. I had to prepare dialysis, sort out medicines. It meant that I couldn’t socialise. … You lose friends a little bit at a time. … Now I think I don’t need them in my life”(M).

Alongside their child’s care, parents also dealt with traumatic personal situations, including managing siblings’ distress, their own serious illness and other illness in the family, relationship stress, separation, seeking asylum and facing deportation. Support was forthcoming from the FSWs who were knowledgeable and insightful; tailoring their care without overstepping boundaries. One family whose child was receiving palliative care explained that the FSW had “just slotted into the family … understands completely how it feels to live with a child with a terminal illness”(Fam). Respite was invaluable, as it “reduced stress levels”(F).

Support through different stages

Many families talked of how the FSWs responded to the child’s changing needs; this was most obvious when providing bereavement support. Some bereaved families spoke of the particular support they had received during the latter stages of their child’s illness. One mother talked of her daughter’s “final tests” and how “through the worst bits (FSWs) were there” for herself and her husband. Another mother explained that the bereavement support had been:

“really good at such a difficult time. It’s rare to find people with that kind of experience (experience of parents losing children). Their experience is what makes them so good at helping you. Friends and other people don’t really know what you are going through”(M).

Parents spoke of how the individualized, continuing care was invaluable as “(FSWs) seem to know where you are in the (bereavement) process”(M). Similar to Wilkinson et al’s(2007) findings, parents valued the chance of talking to a non-family member:

“Without the FSW I don’t know where we’d be. We’d be in a really, really bad place. ... It’s hard to think of how bad a place that could be”(M).

Many parents echoed the feeling that “life would have been worse, a lot worse without [FSW support]”(Fam). One mother described how the FSW attended school with the bereaved sibling to help him make a book about his feelings and supported him to “ask questions about his sister” and “talk about things from his point of view”. The mothers recognised the need for their bereaved children to talk to someone outside the family.