Caregivers' voices: The experiences of caregivers of children who sustained serious accidental and non-accidental head injury in early childhood.

589636 research-article2015

CCP0010.1177/1359104515589636Clinical Child Psychology and PsychiatryWharewera-Mika et al.

Article

Caregivers’ voices: The experiences of caregivers of children who sustained serious accidental and non-accidental head injury in early childhood

Clinical Child Psychology and Psychiatry 1–19 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1359104515589636 ccp.sagepub.com

Julie Wharewera-Mika1, Erana Cooper1, Bridget Kool2, Susana Pereira3 and Patrick Kelly3,4

Flying Doctors - Ngā Manu Ārahi, Auckland, New Zealand of Epidemiology and Biostatistics, School of Population Health, The University of Auckland, New Zealand 3Te Puaruruhau (Child Protection Team), Starship Children’s Hospital, New Zealand 4Department of Paediatrics, Faculty of Medical and Health Sciences, The University of Auckland, New Zealand 1The

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Abstract Head injury is a leading cause of mortality and acquired neurological impairment in children. Headinjured children may have neurobehavioural deficits that persist for years following injury. Head injury can result in significant and persistent caregiver burden, including mental health issues, family stress and disorganisation, and unmet social and healthcare service needs. Few studies have examined the healthcare and social service needs of children and their families following head injury sustained at an early age. This qualitative study aims to describe the experiences of caregivers of children who sustained a serious head injury (particularly non-accidental head injury) before the age of 2 years. Caregivers were interviewed up to 15 years following the initial injury. Semi-structured interviews with 21 caregivers of 15 children (aged 3–15 years at the time of interview) were completed. Thematic analysis of interview data generated three key themes: impact, support and information. The study’s findings reveal the broad impact of serious childhood head injury on caregivers, specifically the significant distress and burden brought about through lack of information, challenges in accessing support and inconsistent care. Recommendations for developing a quality ‘model of care’ and improving ease of access to supports for caregivers are provided. Keywords Caregivers, children, head injury, non-accidental head injury, thematic analysis, whānau/families

Corresponding author: Bridget Kool, Section of Epidemiology and Biostatistics, School of Population Health, The University of Auckland, Private Bag 92019, Auckland 1142, New Zealand. Email: [email protected]

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Clinical Child Psychology and Psychiatry

Introduction Head injury is a leading cause of mortality and acquired neurological impairment in children (Byard, Fine, & Reed, 2011; Feigin et al., 2013; Kraus, Rock, & Hemyari, 1990; Langlois, RutlandBrown, & Wald, 2006; Parslow, Morris, Tasker, Forsyth, & Hawley, 2005). In New Zealand (NZ), about one-third of the population will sustain a serious head injury by 25 years of age (McKinlay et al., 2008). Head-injured children can have persistent neurobehavioural deficits affecting cognitive functioning, psychological outcomes, behaviour and personality (Ashton, 2010; Schwartz et al., 2003; Slomine et al., 2006). The impact of head injury in very young children is likely to be more significant than head injury sustained in older children or adults (Couch & Leathem, 2011; Keenan & Bratton, 2006). Akin to many colonised people, Māori (NZ’s indigenous population) experience inequalities in a range of health and social measures (Gracey & King, 2009; King, Smith, & Gracey, 2009), including rates of head injury (Saltapidas & Ponsford, 2007). Māori rates of serious head injury among children younger than 5 years are nearly double the rate among NZ European (Feigin et al., 2013). These disparities reflect both the colonial history of NZ and its impact on Māori, and contemporary experiences of disadvantage, discrimination and negative lifestyle patterns (Durie, 1998, 2001; Jackson, 1988; Lawson-Te Aho & Liu, 2010; Robson, Cormack, & Cram, 2007). Notably, minority groups internationally have significantly poorer outcomes following head injury (Arango-Lasprilla et al., 2007; Saltapidas & Ponsford, 2007). Despite the potential for very long-term impacts of head injury, healthcare systems are traditionally designed to respond to acute illness, not to chronic conditions (Wagner, Austin, & Von Korff, 1996). The lack of long-term rehabilitation services means the on-going care and support of head-injured victims typically falls on family members (Byard et al., 2011; Serio, Kreutzer, & Gervasio, 1995; Von Korff, Gruman, Schaefer, Curry, & Wagner, 1997; Wells, Dywan, & Dumas, 2005). They provide emotional and financial support, housing and advocacy, facilitate rehabilitation and communication with agencies and identify service needs and providers, and this can be associated with a range of psychological difficulties (Bull, 1990; Carnwath & Johnson, 1987; Ergh, Rapport, Coleman, & Hanks, 2002). The literature has begun to consider the implications of head injury for the family as a ‘system’ (Bronfenbrenner, 1999; Clark, Stedmon, & Margison, 2008; Gergen, 1999; Marsh & Kersel, 2006; Ponsford, Sloan, & Snow, 2012). There is an evolving body of research on the impact of childhood head injury on families (Anderson, Catroppa, Haritou, Morse, & Rosenfeld, 2005; Bedell, Cohn, & Dumas, 2005; Byard et al., 2011; Clark et al., 2008; Gan, Campbell, Gemeinhardt, & McFadden, 2006; Rivara et al., 1996; Wade, Taylor, Drotar, Stancin, & Yeates, 1998) but little on the impact of head injury in infancy (Jones, Hocking, & Wright-St Clair, 2010). This information is vital for the planning of effective accessible and equitable head injury services. One contributing factor may be that in infancy, the most common cause of serious head injury is non-accidental head injury (NAHI) (Parks, Annest, Hill, & Karch, 2012), also known as inflicted traumatic brain injury (ITBI). The NZ incidence of infantile NAHI is between 22 and 31 per 100,000, and the rate among Māori may be as high as 61 per 100,000 (Kelly & Farrant, 2008), one of the highest in the world (Parks et al., 2012). Practical and ethical issues may hinder follow-up and research (Jayawant & Parr, 2007; Kelly, MacCormick, & Strange, 2009; Makaroff & Putnam, 2003). The impetus for this research arose from the observation of a hospital child protection team that families were receiving inconsistent follow-up and support in the community. The aim was to examine the long-term impact on caregivers when a child under the age of 2 years sustains structural head injury. This study extends previous research by providing a qualitative analysis of the


Wharewera-Mika et al.

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experiences of families interviewed up to 15 years after a serious injury in early childhood and where many of the children had been diagnosed as NAHI at the time of injury.

Methods This study utilised qualitative methods (semi-structured interviews) to explore the experiences of caregivers of a child following serious head injury before the age of 2 years. The impact on caregivers and the services accessed were a focus of enquiry, along with areas for improvement. In this study, the term ‘caregiver’ is inclusive of whānau (Māori for extended family) and family.

Participants Participants were a subset of caregivers who had engaged in a large cross-sectional study investigating the incidence of hypopituitarism following head injury sustained in early childhood (Heather et al., 2012). Cases were eligible for the hypopituitarism study if structural head injury occurred within the first 5 years of life and the child was more than 3 years old when that study commenced. ‘Structural head injury’ included skull fracture, intracranial haemorrhage or cerebral injury reported on computerised tomography or magnetic resonance imaging scan. Head injury cases were identified from the Trauma Registry (2000–2010) and Child Protection (1992–2010) databases at Starship Children’s Hospital, the paediatric neurosurgical centre for the Auckland region (population: 1.4 million). Caregivers approached for this study were those whose children were injured under the age of 2 years, resided in Auckland and could be contacted by telephone. The first approach was made by the hypopituitarism study nurse. If the caregiver expressed interest, they were contacted by study investigators. Written informed consent was obtained. Approval for the research was obtained from the Health and Disability Ethics Committee (NTX/11/EXP/149).

Interview procedure Interviews were carried out in a family-friendly community outpatient facility. Participants were reimbursed for travel costs and at the conclusion of the interview received supermarket vouchers as an acknowledgement of their involvement. Background information gathered from participants included demographics, the age of the child when injured and the time since injury. The interviewer was blinded to the mechanism of injury; however, some participants volunteered this information. Interview questions were developed from a literature review to cover three key areas of enquiry: caregiver perceptions of appropriateness of support services, experiences of caring for a child after head injury and perceptions of how services could be improved (Table 1). Interviews were ordered in this way to allow participants to ‘warm up’ in the first section, to talk more deeply about their experiences in the middle section and finally to ‘lift’ again by discussing areas of potential improvement for social and healthcare services. This process was intended to facilitate their comfort, while allowing for flexibility throughout the interviews. Interviews were audio-recorded with the participants’ consent and transcribed to ensure accuracy and assist with analysis.

Data analysis Thematic analysis of the data followed recommended guidelines (Braun & Clarke, 2006). Transcribed interviews were checked and imported into NVivo 8, qualitative data software. Initial


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Table 1. Interview guide. Area of enquiry

Interview prompts

Guide: perceptions of appropriateness of services

Can you tell me which services you have accessed for support, starting from the time _____ had their injury? Are there any other services you know about but have not been able to access? From your viewpoint, do you feel _____ has received the sort of help they needed to be as healthy as possible, to be at school/kindergarten/ kohanga reoa? Do you feel that you have had enough support to care for _____ following their head injury? Guide: experience of caring for a young Can you tell me what it has been like for you caring child who has had a head injury for _____ since their head injury? What sort of an impact do you think _____’s head injury has had on your life? What sort of an impact has it had on your family life? Guide: perceptions of how services could What improvements do you think could be made be improved for families caring for and to support families such as yours who are caring for children who had sustained head injury young children with head injuries? Are there any other things you would like to talk about in relation to _____’s head injury? Do you have any questions about anything to do with this study before we finish up?

aTe

Kōhanga Reo is a total immersion Māori language family programme for young children from birth to 6 years of age (www.kohanga.ac.nz).

codes were generated from transcripts and then reviewed to identify any common patterns or variations. Two researchers reviewed the codes and identified three main themes: impact, support and information. These were discussed with the broader research team, and related sub-themes were finalised.

Results In total, 21 caregivers of 15 children were interviewed (some interviews involved multiple members of the child’s family). Interviews lasted for 1–2 hours. The child or young person was always present in the room or nearby, and some participated in the interviews. However, those data were excluded from this analysis of caregiver perspectives. A summary of caregiver demographic characteristics is displayed in Table 2. Most were female, and more than half self-identified as Māori. The respondent was most likely to be the mother. Most children (13/15) had sustained their head injury more than 5 years before and had been diagnosed with NAHI (13/15). Nine of the children were living with one or both parents, and the remainder were living with other relatives or in foster care. Three thematic categories were identified: ‘impact’, ‘support’ and ‘information’. Each contains a number of themes and in some cases sub-themes (Table 3). As there were so few accidental injuries, comparisons of caregiver experiences between non-accidental and accidental head injuries were not conducted. The following sections present each category in detail. Quotes are de-identified and presented verbatim. Where necessary, contextual words or phrases have been inserted in brackets (e.g. ‘the child’).



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Table 2. Caregiver characteristics (n = 21). Characteristic

N

Gender Female Male Ethnicity Māori Non-Māori Relationship to person with traumatic brain injury Mother Father Grandparent Other Time since child’s traumatic brain injury sustaineda 2–5 years 5–10 years >10 years aThe

16 5 11 10 9 3 4 5 2 5 8

caregivers (n = 21) of 15 children were interviewed.

Theme 1: impact Three key themes arranged in chronological sequence, from the time of injury, were ‘dealing with the processes at the time’, ‘effects of the injury’ and ‘coping strategies’. Dealing with processes at the time. Participants whose children had sustained suspected NAHI commented on the processes they were exposed to during investigation by the police and child protection services. Most reported that they understood these processes had to occur, but the impact of being under investigation was challenging and participants felt pre-judged or judged unfairly. It was more common for Māori participants to describe a stronger sense of feeling stigmatised, which they partly attributed to topical media representation of high-profile Māori child maltreatment cases at the time, and in general, many participants felt that judgemental attitudes affected the responses and treatment they received: Judgment was made the minute we got there (Starship). They thought I had done something, they were suspicious there, I hadn’t even noticed but my family noticed. The way they felt about me influenced their treatment of me. They just watched me, observed, no assistance was given on how to care for him (post injury). They had made a judgment . . . they acted as judge and jury. When we got discharged they just said ‘you can go now’ – no follow up plan or nothing. We were not treated fairly by the staff. (012)

Effects of the injury. This sub-theme centred on the medium- and long-term impact or effects of the head injury on study participants. Participants recounted many challenges and struggles. Dealing with emotional and behavioural challenges post-injury. Varying impacts of head injury were identified, depending on the severity of the original injury. Most consistently reported were persisting emotional and behavioural problems shown by the child, especially difficulties with mood regulation (temper tantrums and aggressive outbursts). A few participants reported destructive and violent behaviour:


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Table 3. Summary of themes and sub-themes derived from participant interviews. Themes

Impact

Support

Information

Sub-themes

Dealing with the processes at the time Effects of the injury

Recommendations and advice for others Lack of information

Coping strategies

Experiences of support Access to services and other supports Recommendations for better care

. . . quite violent and aggressive, pulling hair, spitting, scratching . . . his behaviour when he was quite angry, really, really angry, he would hit (his sibling) a lot when I’m not at home. (004)

Some encountered challenges in dealing with mental health diagnoses applied to their child (e.g. autism) and the emotional/behavioural aspects of other mental health difficulties. ‘She (the child) was threatening suicide and was really quite depressed’ (016). Some participants reported major challenges with delinquency, for example, fire starting. There were difficulties meeting the need for constant supervision of the child following their brain injury: Well, basically, unless I know somebody’s watching her, most kids her age can go to the mall, go to the park, do whatever – you can’t do that because you don’t know what she’ll do. (006)

The child’s inability to effectively communicate was a challenge, and concrete thinking such as ‘she has her opinion and that’s it, she will not budge’ (006) had a strong impact on day-to-day living. Such cognitive effects were reported by many participants, with a negative impact on the child’s education. Most participants reported on-going difficulties related to educational achievement and developmental delays. Dealing with the child’s sleep disturbances (disrupted sleep patterns and routines), physical limitations and medical issues were also highlighted. While some of the physical and medical problems (such as poor balance) were prominent early and improved over time, others persisted or got worse over time – in particular, epilepsy was mentioned as a significant problem by one-third of participants. The emotional impact on families and caregivers. The emotional toll on participants was apparent: It’s caused our whole family intense stress and sadness which we’ve not ever recovered . . . just the ongoing stress has affected my health yeah really just had a detrimental effect, I’m sort of just always run down and tired and my memory’s gone and just from the stress and you know it’s just can’t relax. It’s just had an impact on our enjoyment of life and ability to kind of, to roll with the punches it’s made us more vulnerable. (014) Since his head injury it changed our lives and it changed really his older siblings, everything went you know off course . . . things just changed rapidly when they removed him from our custody . . . life became unbearable. (Child protection services) interfered with our life, that’s what changed it all. (008)

A few participants expressed guilt related to feeling some responsibility for the child’s injury. Some expressed guilt for relationship break-downs with family members as an indirect result of the injury. Relationship difficulties with partners, biological parents and other relatives were commonly reported following their child’s head injury:



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. . . this stuffed our marriage big time. I had to choose, to follow his career (the partner) or her (the child). I felt like that decision was left to me. And so I just chose my daughter. (018)

Many participants highlighted not only immediate concerns for their child’s wellbeing but also for the future. For example, they spoke of feeling fearful about their child receiving further injuries, particularly children with severe aggressive behaviour: . . . is just so stressful with them and it’s really hard when I take him out somewhere I’m always on edge cause I don’t know what he’s going to do, who he’s going to hurt. (004) . . . I’m worried that he’ll get another head injury because he’ll piss someone off and they’ll thump him, punch him in the head and he’ll get another brain injury . . . I’m sick with worry about it the whole time, all the time. (014)

A further impact commonly reported was a sense of loss related to financial hardship due to caring for a head-injured child. Some described constant challenges associated with caring for a child with head injury while also maintaining a professional career (for those who could do so). Some children were no longer in the care of either parent, with almost one-quarter cared for by grandparents. Grandparents highlighted some of the sacrifices they had made, such as loss of their ‘retirement’ years. Many described caring for a head-injured child as a ‘full-time role’ with a need for ‘time out’ and breaks from caregiving. Coping strategies. Many participants expressed resilience. Strategies such as drawing on inner strength, staying motivated by focusing on the child’s wellbeing and use of self-care were all highlighted as assisting participants to cope: I have become so strong, I have strength that I didn’t know I had before. She has grounded me big time . . . (018)

The concept of perseverance was a common thread. Many coped by ‘just getting on with it’, focusing on the future rather than the past. Some families experienced this as ‘acceptance’ – recognising, acknowledging and understanding the brain injury, which supported their ability to cope and persevere. Another coping strategy was to celebrate progress in their child’s recovery journey. Many participants found this ‘rewarding’, and described pride in their child’s accomplishments and ability to enjoy life. Some described an indirect positive outcome of the injury, bringing families closer together. However, caregivers often had periods of feeling overwhelmed and unable to cope: there’s been times I’ve just been sitting on the floor bawling my eyes out and he’s just been launching himself at me, throwing, hitting, kicking and I’ve just been at a complete loss of what to do . . . (014) that’s the hardest thing to get support for me that was the hardest . . . there was times when I needed counselling myself you know. I didn’t expect that (crying) . . . (016)

Theme 2: support Participants spoke at length about access to support services and networks (or the lack of). Three key sub-themes were identified within this category: ‘access to services and other supports’, ‘experiences of support’ and ‘recommendations for better care’.


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Access to services and other supports Public and primary healthcare services. Participants reported both positive and negative experiences in their interactions with Starship Hospital staff. Overall, they spoke highly of the clinical care. Particularly supportive in this setting were encounters with the paediatrician, neurosurgeon, physiotherapist, play therapist and nursing staff. Some participants were also assigned a social worker at the time of their child’s injury, who facilitated their access to services and support in the acute phase of their child’s recovery: I think that we both want to say a huge thanks to Starship Hospital you know and particularly to (the paediatrician), because how he fought for her, he went to court for her, for this girl and he testified in a court situation and he doesn’t shy away from the hard stuff. You know, it’s just really, really amazing to have . . . those sort of people who are there yeah and looking after the difficult ones. (016)

Where encounters were not entirely positive, participants considered this to be related to a lack of care, resulting from negative perceptions held by staff: . . . the physio, she was the only one that spoke to me or was nice. Ward staff and ICU (Intensive Care Unit) staff rarely spoke to me. (012)

In addition to accessing inpatient services and support, a range of regional community services were accessed by participants after discharge, including child and adolescent mental health services, and child development services. In contrast to overall experiences in hospital, access to services in the community was not perceived as positive: She (the child) was threatening suicide and I just kept ringing people up and banging on doors until I got someone to actually listen to me . . . I got told about (the service) so I rang them up and I said you’ve just got to help and they gave me an appointment and we went to see them . . . I felt that they were incredibly busy and they said things to me like ‘we don’t see her (the child) as someone who needs our help, we’ve got worse cases to deal with’, and I was really disappointed actually. (016) We were overwhelmed with people for the first 6 months and then nothing. (010)

A few participants did report positive interactions with community services. Similarly, a range of both positive and negative experiences were reported by participants in terms of access to support through primary healthcare services (general practitioners (GPs)). For example, some participants felt their GP was dismissive of their concerns, while others had GPs who facilitated access to information. Accident Compensation Corporation and other government-funded support services. The Accident Compensation Corporation (ACC) is a statutory body which provides no-fault personal injury cover. For children who meet their criteria, they may fund community assessment and therapy, equipment, housing modifications, attendant care, home help and compensation for loss of potential earnings (Friedman, Reed, Sharplin, & Kelly, 2012). Participants described a range of experiences with ACC, with access to services and support varying widely. Some families described receiving no support at all, while others received fully funded ACC services and support. Where access did occur, this included services and support from paediatricians, clinical psychologists and counsellors, neuropsychologists, occupational therapists, speech language therapists and physiotherapists:



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They (ACC) were really thorough with assessments and made recommendations to follow up, and the care just all follows on. They also tell you what to do at home and he (the child) participated in some studies like an audiology one. He was engaged with this service up until college. They would attend (collaborative heath professional meetings) and annual plans would be devised. A thorough neuropsychology assessment was conducted and strategies to cope with college years were discussed. Excellent support follows on, via recommendations. (012)

ACC-funded educational supports, such as involvement with specialised education services and support through teacher aide hours, were also utilised by some participants. Inconsistencies were evident in the level of support received, with some children receiving no specialist education or teacher aide support and others receiving up to 25 hours per week. ACC-funded carer support was accessed by some participants, which included attendant care hours and childcare. Respite care was also funded for some participants but was not generally accessed. Some participants chose not to access care through ACC services but rather have the funding transferred to a personal relative or friend who would provide the care. For a few participants, funding was accessed for childcare of siblings of the injured child following the head injury. Other government-funded support services, such as Strengthening Families (which aims to facilitate access support for families), Healthline (a free information telephone service) and the Health & Disability Commission, were also accessed by some participants. A few participants described attempts to access such services and support without success. Non-government and community organisations. A number of community organisations were accessed for support with varying degrees of success. Barriers such as not qualifying for specific services (due to income level or injury criteria) were described by a few participants. For those who were able to access it, such support included disability referral services, local community health and social service providers, advocacy services, charitable organisations such as ‘Grandparents Raising Grandchildren’ and local parenting, church and school/employer support. In most cases, these services were only accessed if the participants actively took the initiative. Financial support. Most participants accessed financial support through the Government’s Child Disability Allowance. However, most did not find the service as helpful as they had hoped: The social support service isn’t helpful. I am on the disability allowance, . . . I think that’s just like a waste of time, it gets nothing you know because prescriptions have gone up, everything’s gone up but all this money has been going since he was a 1 year old you know, it’s been the same (amount) for 10 years. (003)

A number of participants accessed privately funded paediatricians, clinical psychologists specialising in neuropsychology, counselling and parenting programmes – although one participant noted that the parenting programme was not really geared to a child with a head injury: ‘they were out of their depth I think’ (014). Whānau/family and friends. For most, whānau/family and friends provided a key source of support, often filling the gaps offered by services: Well because there were no services to help me . . . our girls just rallied around and helped . . . we could rely on them, you know to fall back on them for their support. (001)

Family and friends often provided caregivers with the opportunity to take a break, as well as providing financial and moral support, with some participants describing this support as ‘unconditional


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love’. A collective approach to caregiving was more commonly discussed by Māori participants in particular. In addition to the physical and emotional support provided by whānau/family and friends, one participant accessed emotional support and information online. Experiences of support Positive experiences. Many participants reflected upon positive experiences with support services following their child’s head injury. Positive experiences were related to two key factors – effective communication and collaboration between support services (including referrals across agencies): There was evidence of a bit of collaboration (between education and child support services) . . . having those agencies (together) at the family group conference say(ing) ‘look we can assist a bit more here’. (009)

Collaboration occurred for many families during Individual Education Plan (IEP; educational focused) meetings, where goals would be collaboratively devised and support plans created. Negative experiences. Despite their positive experiences, many participants also reported negative experiences related to a number of key factors. These included little or no follow-up care, inadequate supports, access issues, poor communication and sudden funding cuts. A number of participants felt desperate when faced with barriers while trying to access support: I just sort of felt you know just walked out the door and that was it, I just had been cut off and was out there floundering on my own after a week or so and was just cast adrift and have been adrift ever since if that makes any sense. That’s how I felt and that’s how it’s been . . . and so it was just an overall lack of information and the alienation process that was really, really awful at the time. (014)

A number of participants also felt that inadequate support was provided by statutory child protection services following placement of the injured child (or children) with them: We had no clue what we were doing, I think we took on board two really demanding children . . . in some ways I think if it was that difficult I should have been maybe more honest and said I don’t think we can do this. I feel like child protection services they need to be a bit more involved. Just because they’ve placed the children in my care I felt that they’ve pulled back right out yes they are there in the background but I need a bit more than that I need you to ring me. (004)

The families described little success when attempting to contact statutory child protection services for additional support. Overall, a common experience among participants was the battle and efforts required to source and maintain on-going support. Where gaps in support services were persistent, some families took it upon themselves to fill these where able to, for example, by attending school daily to assist their child. Some took on administrative-type roles with regard to their child’s care, carrying out tasks such as reminding support service staff to turn up to scheduled meetings (after repeatedly experiencing them not turning up). Poor communication was a common factor related to negative experiences, particularly with regard to medicalised language, disrespectful communication styles and negative attitudes: You had all these professionals I suppose and they’re all talking . . . and you’re sitting there thinking I don’t really know what you’re talking about. (010)



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All we had was a lot of therapists telling me what to do. I remember at the very first meeting I was so angry at all of them, and it was such an awkward meeting ‘cause they (could) tell I was angry . . . with people telling you how to teach him to eat, to dress and more from that role, but not asking me ‘what did we want?’ (004) . . . part of the follow up was social workers, I had a problem with their attitude, they treated me like I wasn’t telling them the truth. (006)

Sudden funding cuts were also a key factor causing distress and negative service experiences. At the time of the interviews, some families had also been warned of additional funding cuts to crucial support services: ACC just stopped the psychologist sessions, it was almost like literally overnight we had a session due that week and they rang a couple of days before and just said they were stopping this. They said well because we can’t find anything directly linked to the injury . . ., it’s a shame because we were making good progress . . . I was really, really disappointed . . . to get help is just so difficult. (004) They just told me after this year they’re going to cut his educational help, their reasoning behind that is because of (government) budget restraints they said . . . It makes me very angry and frustrated. I can’t afford it but I might have to get someone in to help me. (001) The special education unit that he has been provided is in jeopardy, the current government want to close it (it’s not ACC funded), it wouldn’t be a good idea . . . I feel absolutely gutted actually because even though it took three years it’s taken almost a year and a half nearly almost two years for him to settle down and to trust somebody . . . just trials and tribulations. (003)

Recommendations for better care. In light of the inadequacies of some support services, participants identified what was needed when caring for a head-injured child. The key factors include effective communication: . . . just need to stay on top with communication. If his difficulties are discussed then they can be resolved, that’s what I’ve found in the past. (012)

Given the battle many participants were faced with when accessing support services, improving service accessibility was also described as an area needing improvement: . . .there should be more out there and it should be easier to access cause a lot of the times when I did finally get support was when I was at my wits end or when a crisis had actually happened . . . (005)

Some participants thought having an advocate available would really assist in these circumstances: . . . somebody who can access these departments and people and maybe has that knowledge about where you need to go and can also break things down into terms you understand and can be a little bit of a sounding board. (010)

Greater support for coping with and addressing behavioural issues was also recommended by participants: We haven’t had enough support to be able to care for him in terms of the behavioural issues. (014)


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Support that could be sustained into the future was also a key recommendation. It was suggested that such support may encourage independence and responsibility as the children develop into their teens (and beyond): They’ve got to learn to live in the word, and she has to learn to stand up a little bit for herself as well. There’s not always going to be an adult there to come to her rescue. (009)

Alongside individual support that may be useful, many participants expressed an interest in the establishment of support groups or networks where families in similar situations could share their experiences, challenges, solutions, advice and information.

Theme 3: information The theme ‘information’ refers to participants’ experiences with regard to the information they received (or did not receive). There are two sub-themes within this category: ‘lack of information and ‘recommendations and advice for others’. Lack of information. Many participants expressed frustration and anxiety regarding the lack of information about the actual injury and the potential effects both short term and long term: Well, the bewilderment and shock in the beginning, and lack of understanding, and lack of information, so that we could never put it in to context and find out information and get our head around the whole thing. The worry about ongoing effects and the constant watchfulness, we’ve all had that . . . that watchfulness and fear. (014)

Several participants commented on the value of preparing for the future and knowing what to expect as a critical strategy for coping and reducing stress. Some went to great lengths to do this. One participant described how this could be achieved through information gathering, enabling the opportunity to pre-empt any issues that may arise and researching possible solutions (e.g. by using the Internet to talk to other parents about their experiences). Another participant had completed university studies to assist with understanding her child’s difficulties more. Recommendations and advice for others. Many participants provided advice for other caregivers in similar situations supporting head-injured children. A number specifically offered advice regarding accessing ACC funding and support: If I can help another family . . . with what I’ve learnt from the system and how to fight for their rights you know . . . when ACC say ‘no, no, no’ just say ‘what can you offer her? . . .’ ‘how can you support me?’ (002)

Some participants strongly expressed the need to be proactive and to be prepared to fight when attempting to access support services and funding: I knew how to make the system work for us . . . I think because I’m older and confident and articulate and able to say to people this is an issue . . . it does need to be supported. Never, ever let anything go, (like a) dog with a bone really . . . I learnt really early on that the only way to get what you think your child needs is to keep asking the questions of the services and saying how do I get the help I need, I need this! (016)



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A number of participants suggested the development of a resource pack to inform caregivers of the services and funding available for children with disabilities following head injury, as well as information about what to expect in terms of their child’s progress and development. Experience of the study interview. In addition to the thematic categories described above, several caregivers found participation in the study therapeutic in its own right and an opportunity to say things that they felt needed to be heard: it’s been quite cathartic to be able to sort of document what the last 15 years have been like. (016) so this study is one way for me to tell how upset I am with the system and no-one’s there for me. (003)

Discussion This research has highlighted the effect that head injury sustained in early childhood has on caregivers. The findings clustered into three key themes: impact of the injury, availability of support services and information needs. Within the ‘impact’, theme participant’s responses clustered around dealing with the processes at the time, effects of the injury and coping strategies. In situations of suspected NAHI, caregivers acknowledged that certain processes had to occur; however, the impact of being under ‘investigation’ added to an already stressful situation. This was more commonly noted for Māori whānau. In terms of support needs, most caregivers were exposed to multiple stressors in their attempts to engage with support services, both in the short and in the long term, following the initial injury. In order to access support, caregivers were effectively required to become ‘health system experts’. The effort required to do this further affected the family as a whole, often meaning that the caregiver was unable to work (in paid employment) to their full capacity, and also drew attention away from meeting the needs of other (uninjured) family members. Having to learn the processes involved in accessing support services and interventions was challenging. While individual practitioners or services provided valuable input in their own areas, the overall lack of cohesion, collaboration and integration of care and support had a major impact, as did the lack of information regarding both the head injury and the supports available. Overall, the treatment received and access to support services varied widely, indicating that there is not a standard, cohesive response by healthcare and support services for children who sustain head injury at an early age or their caregivers. Despite the dramatic impact of head injury in childhood, one striking aspect of our findings was the remarkable resilience of many whānau/families. Many caregivers were so determined to achieve the best possible outcomes for their child that they persevered in the face of sometimes overwhelming obstacles and challenges. Many felt they succeeded in accessing support despite the system rather than because of it. It would be reasonable to suggest, therefore, that if the system could be improved and the barriers reduced, then these caregivers would be enabled to work towards better and more sustainable long-term outcomes for their children. The key strengths of this study were that it described a population whose caregivers are almost invisible in the literature (infants with serious head injuries under the age of 2 years, where in most cases there was concern about NAHI), followed for up to 15 years post-injury. Few published studies have followed children or their families for this duration (Bedell et al., 2005; Clark et al., 2008). Previous literature suggests that the effect of childhood head injury on families may be less evident in the short term (Anderson et al., 2005; Rivara et al., 1996). There were sufficient participants in our study to achieve data saturation and to capture the breadth and depth of caregiver experience (Guest, Bunce, & Johnson, 2006). Finally, the experiences of indigenous caregivers are largely


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unexplored in the literature. It is likely that the central role of a Māori interviewer in our study increased the involvement and engagement of this often hard-to-reach population (Kiro, 2000; Ormond, Cram, & Carter, 2006). The findings need to be considered in light of some limitations. Caregivers may have been selective in their description of their experience, for example, if there was sensitivity about the original mechanism of injury. The fact that most of our cohort sustained NAHI may mean that some aspects (such as grandparents becoming long-term caregivers) may not be generalisable to accidental injuries. In addition, around half of the injuries were sustained more than 10 years ago which may have resulted in some recall bias regarding service provision in the immediate to medium time period following injury. We did not evaluate pre-morbid family functioning, which affects the risk of poor outcomes following head injury (Anderson et al., 2005). It is also possible that the experience of one or two caregivers may not fully reflect the experience of all the child’s caregivers over time (Wade et al., 1998). Although social desirability bias was a potential issue (Fisher, 1993), the frankness of the responses suggests that this was unlikely to have seriously affected the findings of our study. We did not examine whether differences in caregiver perspectives varied by time since injury, or what if any service improvements have occurred during the period when these children’s injuries occurred. Therefore, we were unable to establish whether improvements in service provision impacted caregiver perspectives. This study is consistent with the head injury literature describing caregivers’ experiences of poor transition from hospital to community services, inadequate information (Clark et al., 2008) and significant and persistent caregiver burden. This burden includes mental health issues (Wade et al., 2002), family stress and disorganisation (Wade et al., 2006), unmet needs for social and healthcare services (Aitken et al., 2009; Slomine et al., 2006) and the constantly evolving challenge of supporting the child’s social and educational participation (Bedell et al., 2005). Clark et al. (2008) described a theme of ‘changes to and loss of the past child’ which did not appear in our study, possibly because our interview focused on the issue of support services rather than primarily on the emotional impact of the head injury itself on the caregiver. Also, in many cases in our study, the head injury occurred in very early infancy and the caregiver at the time of interview may not have been the primary caregiver at the time of injury. However, one contributor to the theme of ‘loss of the past child’ was the behavioural changes resulting from childhood head injury, a very prominent feature of our study. This is consistent with the emerging literature on the severe effects of early childhood head injury on executive function, attention and behaviour (Kurowski et al., 2011). Young age at time of injury is a key risk factor for subsequent behavioural difficulties and family burden (Anderson et al., 2005). These findings highlight the critical need for an evidence-based standardised model of postacute care for children who sustain traumatic brain injury in the first 2 years of life. This would provide caregivers with adequate information, care and support to reduce caregiver burden and improve long-term outcomes. At present, few resources exist which address the issues specific to the needs of children and families dealing with head injury (Arlidge et al., 2009; Jones et al., 2010), and there is little access to advocacy services. There does not appear to be equitable access to appropriate services and supports for all, and it is not appropriate, nor should it be necessary, for caregivers to become ‘health system experts’ in order to access the supports they need. In particular, the specific needs of Māori whānau need to be addressed, given the disparities in rates in childhood head injury and existing health and social inequities. Addressing the specific needs of other prominent minority groups in NZ (e.g. Pacific peoples) is also necessary in order to prevent poorer outcomes following head injury. This study would suggest caregivers did not experience an effective or co-ordinated transition of care from hospital to community services. Overall, they did not perceive ACC as providing a



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proactive and easily available support services framework which included or funded all necessary specialised services. In particular, specific support for managing challenging behaviour was difficult to access and was often not available long term. It is important that any standardised model of care takes a long-term approach which, if necessary, continues throughout adolescence and into adulthood. The development of a ‘resource pack’ was identified by caregivers as an important innovation that would be highly beneficial. This type of resource pack could include the following: information about childhood head injury, including potential short- and long-term outcomes (what to expect at different ages/stages); funded services caregivers could access and broader information about available support services (including health, educational and social services). Finally, caregivers identified access to support groups and networks and opportunities to receive psychological supports as critically important. The findings of this study highlight several areas for future research. There is a need for a national situational analysis of service provision for brain-injured children and their families. Such an analysis coupled with a review of evidence-based practice and interviews with key stakeholders could inform the development of a standard model of care, the expansion of existing services as required, and provide a baseline for monitoring subsequent improvements. Byard et al. (2011) describe the development of a community-based child neuropsychology rehabilitation service in the United Kingdom based on an extensive review of the published literature. The service has adopted a developmental neuropsychology approach to effectively work with children with head injury and their families. Finally, there is no international literature on a best-practice model of care and support for indigenous populations dealing with the long-term effects of serious head injury in childhood. Any standard model of care developed for NZ would need to be developed in close collaboration with Māori communities and pay close attention to strategies and processes which are most likely to be relevant and effective within those communities. This would also be the case for other minority communities in NZ.

Conclusion Head injury imposes a very significant burden on children, caregivers and society. This is particularly so where the injury occurs in the first 2 years of life and in families and communities who are already disadvantaged. In addition to on-going efforts in primary prevention, to reduce the burden of head injury on society it is important to ensure that the system of care and follow-up provides effective support for the caregivers of its youngest and most vulnerable members. Acknowledgements We thank Dr Wayne Cutfield who gave the research team access to participants in the Hypopituitarism Study. We are grateful to Christine Brennan (research nurse on the Hypopituitarism Study) who made initial contact with the caregivers for this study. Without her enthusiastic support, it may have proved difficult to locate and recruit our study participants. We would also like to acknowledge other members of the research team: Professor Fred Seymour, Professor Shanthi Ameratunga and Patrick Mendes. Finally, we particularly thank the children and young people with head injury and their caregivers who participated in this study.

Funding Bridget Kool’s time on this project was supported by an Auckland Medical Research Foundation PostDoctoral Fellowship. Research expenses for this study were covered by a Performance-Based Research Fund


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grant awarded to Bridget Kool by the University of Auckland. Dr Pereira’s time as Child Protection Fellow and the supermarket vouchers were funded by the Starship Foundation.

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Author biographies Julie Wharewera-Mika is a Māori clinical psychologist with The Flying Doctors – Ngā Manu Ārahi (Mobile Māori Clinical Psychology Consultants), she has extensive experience in the mental health sector with both adults and children. In the past she has held research appointments at the University of Auckland. Her research focuses on improving Māori mental health and wellbeing, mental health inpatient care, service delivery, support services for survivors of sexual violence and Māori mental health workforce development. Erana Cooper is a Māori clinical psychologist with The Flying Doctors – Ngā Manu Ārahi (Mobile Māori Clinical Psychology Consultants), she has previously held an academic appointment at the University of Auckland, and has an extensive background in the mental health sector as a practitioner. Her research interests include whānau (family) mental health and wellbeing, child maltreatment and whānau violence, parenting, clinical neuropsychology and neurorehabilitation, clinical psychology, and cultural competence. Bridget Kool is an injury epidemiologist based at the University of Auckland. Her previous clinical roles include 25 years as a paediatric nurse; and trauma coordinator at Starship Children’s Hospital. Her current research interests include: falls in young and working aged adults, traumatic brain injury, the role of alcohol in injury, trauma outcomes, and child maltreatment.



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Susana Pereira is a paediatrician in the Child Protection Team (Te Puaruruhau) at Starship Children's Hospital, this team sees children and young people where there are concerns around possible neglect or abuse. Susana is regularly involved with teaching medical students and other health professionals in the medical assessment of all forms of alleged child abuse, and has given evidence as an expert witness in criminal proceedings. Susana has been involved in other research related to child abuse. Patrick Kelly is a paediatrician at Starship Children's Hospital, Clinical Director of the Starship Child Protection Team (Te Puaruruhau), and a Clinical Senior Lecturer in Paediatrics at the University of Auckland. He was a founding member of the Child and Youth Mortality Review Committee and the Family Violence Death Review Committee, and was Clinical Leader for a National Managed Clinical Network in Child Protection. He has a longstanding research interest in abusive head trauma.


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