McDonald et al. - Young carers in NZ

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Home < Publications < Our Journals < Kotuitui:New Zealand journal of Social Sciences Online < 2009

K08019; Online publication date 8 May 2009
Received 21 October 2008; accepted 1 April 2009

Kōtuitui: New Zealand Journal of Social Sciences Online, 2009, Vol. 4: 115–129
1177–083X/09/0402–115 © The Royal Society of New Zealand 2009

PDF file of entire paper: Print-quality (760K)

Kōtuitui

New Zealand Journal of Social Sciences Online

An exploratory study of young carers and their families in New Zealand

Janet McDonald

Jacqueline Cumming

Health Services Research Centre
Victoria University of Wellington
PO Box 600
Wellington 6140, New Zealand

Kevin Dew

School of Social and Cultural Studies
Victoria University of Wellington
PO Box 600
Wellington 6140, New Zealand

Abstract The 2008 New Zealand Carers’ Strategy recognises the role that "young carers" play in supporting family members who are ill or disabled, but we know little about this group of family carers in New Zealand. In this study, utilising grounded theory methods, interviews were undertaken with 14 young carers and nine other members of nine families to explore their experiences of young caring. Young caring occurs in the context of family relationships and expectations, involving both choice and obligation, and for some, a strong sense of responsibility. Young carers contribute in a wide variety of ways and they report a range of responses to this role and its effects on their lives. Appropriate formal support services can reduce the level of family caring required, including that by young carers. Greater awareness of young carers is needed, along with adequate and acceptable support services for families.

Keywords young carers; family care; informal care; disability

INTRODUCTION

The first guiding principle of The New Zealand Carers’ Strategy and Five-year Action Plan 2008 is to "Recognise diversity" among carers and consider the needs of specific groups such as "young carers and Māori and Pacific carers" (Ministry of Social Development 2008). Who, then, are these "young carers"? According to a recent Young Carers New Zealand brochure ("Hope: help us be seen help us be heard!" undated), "We are children and young people who support someone who has a chronic illness, or is disabled, coping with the effects of injury, or experiencing a mental illness."

There has been little research about young carers in New Zealand to date (Ferguson et al. 2001; Loose 2004; Gaffney 2007). This study aims to explore, through interviews, the experiences of both young carers and those they support, and to develop an understanding of why this form of caring occurs. The paper begins with some international background about young carers, followed by the methodology of the study and presentation of the descriptive themes that arose from the interviews, and concludes with discussion of why young caring was occurring in those families. The findings contribute to our understanding of the lives and experiences of young carers and their families.

Background

Awareness of the role and needs of family carers has been increasing since the 1970s (Heaton 1999). Recognition of the subset of young carers dates from the late 1980s, particularly through research in the United Kingdom, and subsequently Australia, the United States, some African countries, and elsewhere. More recently, interest in young carers has been growing in New Zealand, with the formation of Young Carers New Zealand in 2005 (Tulia 2005) and Ministry of Health commissioned research into developing a recording tool for agencies to identify young carers (Gaffney 2007).

The number of young carers is uncertain, with overseas estimates suggesting <5% of children under 18, and perhaps 5–10% of those aged 18–24, may be carers (Australian Bureau of Statistics 2003; Becker 2004, 2007; Halpenny & Gilligan 2004; Hunt et al. 2005). In the 2006 New Zealand Census, 4.2% of those aged 15–18 years reported having looked after, within the past 4 weeks, a member of their own household who was ill or had a disability, and 3.5% reported having looked after someone outside their own household (without pay). In the 19–24 year age group, 4.7% had looked after a member of their own household, and 5.1% had looked after someone outside their own household (data supplied by Statistics New Zealand). These figures do not tell us anything about who the young people were caring for, the amount or level of care being undertaken by the respondents, or whether these situations were temporary or ongoing. We also lack data about the caring experiences of children under 15 years of age.

Three British surveys of young carer "projects" (social services which were supporting young carers) have provided a picture of young carers and those they support (Dearden & Becker 1995, 1998, 2004). The most recent survey found young carers most commonly supported their mother (52%) and just over one-half were living in lone-parent families, compared with about one-quarter of families nationally. Physical health problems and disabilities were the most common care needs (50%), followed by mental health problems, including alcohol and substance misuse (29%). Young carers’ assistance included domestic tasks, nursing and intimate cares, giving emotional support, and caring for siblings. Caring had commonly been going on for some years. Where known, one-half were caring 10 hours or less per week, while 18% contributed over 20 hours per week (with the remainder in between). Finally, of those aged between 5 and 15, 22% were missing school or experiencing educational difficulties because of their caring responsibilities.

This leads to consideration of the possible impacts of caring on young people. As many studies are cross-sectional or descriptive, we should, however, be cautious about assuming cause and effect (Shifren & Kachorek 2003). In addition, an absence of control groups means we cannot disentangle the possible effects of, for example, socio-economic status from caring per se (Keith & Morris 1995; Olsen 1996). In spite of these considerations, studies do suggest that young caring may cause physical health problems such as poor sleep from needing to care during the night (Noble-Carr 2002a) and back problems from lifting people (Aldridge & Becker 1993; Noble-Carr 2002a). Stress and anxiety may arise both from concern about having a parent who is ill or disabled and from the responsibility of caring for them (Elliott 1992; Frank 1995; Newton & Becker 1996; Dearden & Becker 2000). Young carers may also experience educational difficulties including absence from school, lateness, tiredness (affecting attention and concentration), difficulty completing coursework and homework, poor attainment, restricted peer networks at school, difficulty joining in extra-curricular activities, bullying, and behavioural problems (Dearden & Becker 2000, 2002; Moore et al. 2006; Siskowski 2006). Caring responsibilities may reduce a young person’s time for social activities and building peer relationships, leading to isolation (Aldridge & Becker 1993; Frank 1995; Frank et al. 1999; Noble-Carr 2002b; Bolas et al. 2007). Both negative and positive effects on family relationships have been reported (Aldridge & Becker 1994; Frank 1995; Liddiard & Tucker 1997; Tatum & Tucker 1998; Lackey & Gates 2001; Moore 2005).

On the other hand, positive outcomes may include the development of practical skills, independence, maturity, and understanding of illness and disability (Dearden & Becker 2000; Banks et al. 2001; Lackey & Gates 2001; Thomas et al. 2003).

METHODOLOGY

Given the paucity of New Zealand research about young carers to date, it was appropriate to take an exploratory, qualitative approach to the topic. As the study sought not only to describe participants’ experiences but also to find out why this form of family care occurs, methods drawn from grounded theory concepts were used as grounded theory "…explain[s] a given social situation by identifying the core and subsidiary processes operating in it … the grounded theory method generates inductively based theoretical explanations of social and psychosocial processes" (Baker et al. 1992).

Data came from interviews with 16 members of seven families where a young person was involved in caring or providing support for a family member with a chronic health condition or disability. In addition, one older participant gave a retrospective account of childhood caring. Information was also drawn from a New Zealand Television One Attitude programme segment screened on 17 June 2007 about a family in which teenage triplets helped their mother to care for two older brothers with muscular dystrophy (RSVP Productions Ltd 2007). In total, there were 23 participants from nine families.

Ethical approval for the study was obtained from the New Zealand Multi-region Ethics Committee. Initially, approval was given to interview young carers aged 14–25, the lower age chosen in order that that the young person could give their own consent, and the upper age to incorporate the transitional period after finishing school. Because of enquiries from families with younger children who were interested in taking part, the lower age was later reduced to 11 with the permission of the ethics committee. All participants gave informed consent (for those aged under 14, a parent consented to their child taking part, and the child assented). Family members were interviewed individually.

In common with other studies about young carers (e.g., Aldridge & Becker 1994; Frank 1995; Eley 2004), finding participants was difficult and multiple recruitment strategies were used, including through carer networks, support groups for people with chronic conditions, medical sources, social service and community organisations, youth networks, and personal contacts. In all, it took 6 months to recruit the sample.

Initial semi-structured interview schedules were developed from topics arising in the literature. These provided a guide for interviews while allowing other significant themes to be explored as they arose. All interviews were tape recorded with permission and subsequently transcribed by one of the researchers (JM). Grounded theory is an iterative process of collecting data, coding and comparing concepts in the data, "memoing" ideas about analysis and new questions that arise, followed by further data collection and analysis (Glaser & Strauss 1967; Strauss & Corbin 1998). Ultimately, a grounded theory was developed from this research, of change and adaptation in families with young carers. Changes were identified in who cares within families, in what external support was available, and in the attitudes of young carers towards caring. There were adaptations in how caring was allocated, becoming used to the way life is, knowing how to care, attempting to balance life (including through trade-offs), rewarding care, and anticipating further adaptations in the future. This grounded theory is presented in more detail elsewhere (McDonald 2008). As there is little information to date about young carers in New Zealand, this article focuses on a description of the families in this study and their experiences of giving and receiving care, along with a discussion of why young caring was occurring, from which some policy implications are drawn.

RESULTS

The sample

Originally, the intention was to interview pairs of family members (a young carer and the person they support). In some families, more than one young carer was able to be interviewed, while in five families it was not possible or appropriate to interview the person supported (either because of the nature of their condition or because they were now deceased). In three of these cases, mothers spoke on behalf of the person being supported, as well as giving their own perspective; in the other two instances, only the young carer was interviewed. The study families are set out in Table 1.

Table 1 Study sample of young carers and their families.

Family	Number of young carers interviewed	Family member/s supported	Other family member/s interviewed
Attitude TV	3	2 brothers	2 brothers mother
Set 1	1	1 sibling	parent interviewed on child’s behalf
Set 2	2	1 parent	parent
Set 3	1	1 parent	parent
Set 4	1	1 sibling + 1 parent	parent only
Set 5	2	1 sibling	parent interviewed on child’s behalf
Set 6	2	1 grandparent	now deceased; parent interviewed instead
Set 7	1	1 grandparent	(not interviewed)
Set 8	1	1 parent	(now deceased)
Total interviews	14		9

There were 14 young carers (12 female and 2 male), ranging in age from 11 to 26, and with one older participant who gave a retrospective account of childhood caring. Eleven began to have a role in caring when they were aged under 10 years, two were aged between 10 and 20, and one was aged over 20. All had been caring for a number of years (the minimum being 3 years). Only one young carer was caring alone; in the remaining families, there was at least one parent as well as (an)other sibling(s) who were also caring. Eight of the young carers gave their ethnicity as New Zealand European; three as Pacific; and one as Māori (the television triplets did not give this information).

Nine other family members were interviewed. Five of these received support from the young carer. Four other mothers gave their perspective as well as speaking on behalf of disabled children who were not able to be interviewed, or a deceased family member. Eight families were living in cities and one in a rural area. In all the families, at least one parent and/or the young carer were working.

In each of four families, the young carers were supporting their mother; in two, their grandmother; and in five, a sibling (in two families, more than one person was being cared for). The reasons for support were arthritis (1), arthritis and cancer (1), autism and a physical condition (1), cerebral palsy (1), intellectual and associated physical disabilities (1), medical condition (1), mental health condition (1), muscular dystrophy (2), neurological condition (1), and physical/mobility needs (1).

The context of care

The caring described in this study was being undertaken by and for family members. There was a strong sense from all participants that caring was embedded in the context of relationships and was part of the reciprocity of family life. The commentator on the Attitude television programme noted caring was "a two-way street" (in this instance, the brothers with muscular dystrophy helped their siblings with homework). It was evident in this study that young carers also received care from their families and, conversely, those who were supported gave back in other ways. Young carers spoke of the mutuality of relationships, as well as practical returns such as "clothing, food, shelter",the imparting of skills and knowledge, support for their interests and activities, and sometimes payment or other rewards for caring.

I think it’s good having someone care from your family because it’s close family. It’s not supposed to be, ‘I don’t do this for you, the caregiver does that.’ We’re family, [we] do this for each other. (Young carer)

I think caring is a great word because that’s what I feel the kids do—they care for me … It’s all about a relationship of caring, a relationship that is based on wanting the best for the other person. (Parent)

Some young carers and parents described ways in which family culture shaped caring expectations, although they did not always find this easy to explain:

[Spouse] and I work on the premise our marriage is trying to do what we can for each other, not just suit yourself, and I suppose that kind of extends over to the family and then if you can help each other out, do. …I think probably there is an underlying expectation that you can help out and are able, that you should, but it’s unspoken. (Parent)

In [our] culture, it’s expected that one of the daughters is to look after the grandparents when they’re older. It’s never the son for the reason the daughter can do the personal things, and the son is not to. The son and other siblings are supposed to support the carer. (Parent)

There were mixed opinions among young carers about the appropriateness and usefulness of the term "young carer". Some eschewed it completely because they viewed caring as part of family relationships ("I wouldn’t [think of myself as a young carer]. I think of myself as a sister, and that’s it."); they preferred another concept for the roles they performed ("What am I? I will always say, ‘security’."); or the phrase was perceived as applying to those caring for someone more disabled than their family member:

When I think of young people who are caring, I always think of people who are more disabled … I know I help my [family member], and I know that she technically has disabilities, but I don’t think of it like that. (Young carer)

Others considered the terminology appropriate for themselves and as a general description for young people caring within families. Even some of those who did not adopt it themselves thought it could be useful for creating awareness and understanding of the role young people may have in families and acknowledgment of their skills.

Care tasks

Young carers reported helping in a wide variety of ways, depending on what was needed. All helped with some household tasks (cooking, doing dishes, cleaning, washing, ironing, grocery shopping, and gardening). For a number, this was a large and regular component of their caring. Others did more at particular times (e.g., when a parent was ill or very tired, or the other parent was not available to help). For a third group, helping with household tasks was less important than other forms of caring.

Parents recognised the ways their children were helping around the house and that, for some, this is a significant contribution. However, they also viewed this as part of learning responsibility within the family and gaining skills for independence. Both parents and children may shape expectations of helping in the home:

I don’t think I’m probably very much different than other families. I know I have friends who say their kids don’t do anything and that might be the same whether their parents were disabled or not. It depends on the child too as to how sensitive they are. (Parent)

Young carers in five families helped with some form of personal care, including toileting, washing/showering, dressing, and feeding. For some, this was a daily activity, although it might be shared with siblings and/or parents, while others helped sporadically when the need arose.

In four of these families, young carers also helped with lifting, both manually and using hoists. Examples were lifting a person in or out of the shower/bath, helping them transfer from sitting to standing or between seats, and positioning them in bed.

There were examples of medical/nursing care, including giving medication and injections (knowing what, when, and how to do this) and changing dressings. Some young carers helped with medical appointments by accompanying a person and being a support or advocate. Other periodic assistance was given with various mobility needs such as help with balance and walking, managing stairs, pushing a wheelchair, or driving a person to the shops or an appointment.

Young carers sometimes looked after younger, non-disabled siblings, both assisting parents day-to-day and relieving them when the parent was unwell. For those with a disabled sibling, support could include playing with them, teaching a skill, "babysitting", or taking them to community activities. Those supporting someone who was non-verbal developed skills in interpreting the person’s needs from their mood and behaviour. They might at times speak on their behalf, answering questions, explaining things, or giving voice to their perceived thoughts and feelings. Another form of care was to "keep an eye"on the sibling’s general welfare, safety, or behaviour. This extra pair of eyes and ears freed a parent to get on and do something else or to rest, knowing they would be alerted if there was a problem. This supervisory role sometimes extended to being present when paid carers were in the home, being aware of what they were doing, and informing parents of any concerns:

If we have a change in carer … [my children] will report to me things that they’re not sure about—‘We don’t think this went so well, mum; maybe have a chat’—and I’ve found that very useful. (Parent)

There were ways in which young carers kept an eye on adults’ health and needs too and were alert for any problems arising—"I’ll be watching to make sure she’s okay". They may also monitor the safety of the home environment (e.g., heating appliances) and provide security by their presence.

Nearly all the young carers and/or their parents mentioned they developed early the ability to look after themselves, growing up quickly, being independent and mature, "and that in its own way was an assistance". Other forms of caring less frequently mentioned were trying to find information about entitlements to help, being an advocate for the person’s respect and care, and contributing financial support to the family.

Within families, tasks were sometimes allocated explicitly and with consultation; at other times, whoever saw a need would respond to it (working with the assumption that everyone would "pitch in and help" when they could). Over time, jobs could become automatic, although there were the usual family situations of parents needing to prompt a child to do a chore, and one sibling trying to get another to do something.

Some tasks were assigned according to individual personality and preference, and to give different family members a break. However, this could only happen where someone else was available and willing to do what was required. In the absence of choice, one may "have to do it anyway" . The issue of choice will be considered further below.

In terms of gender, there was a clear expectation in one family that any intimate caring would be done by females; in other families, both boys and girls were at times involved with dressing and toileting siblings of both the same and opposite sex.

Some young carers considered there were limitations to what they could and would do, according to their capability and willingness to undertake particular tasks. Two said their parents ensured caring would not affect their studies. Parents identified a variety of limitations to their expectations about what and how much children would do. These included the child’s willingness to help; the amount and frequency of what they requested; and not asking children to do non-essential tasks or those which would usually be done by a paid caregiver, unless the parent paid the child in these instances. Parents did not assume children would be responsible for siblings when they were adults, although they hoped there would be continuing relationships and involvement by consultation and choice. As already noted, in some families, children were undertaking intimate care. For other parents, personal care, except perhaps for some assistance with dressing, went beyond what was acceptable. Preferred options would be to find a way to manage oneself, or to get help from a spouse or paid assistant.

I wouldn’t want them to be involved in that. I think that crosses the line between them being kids and them being nurses … [and] I don’t think it’s fair on them. (Parent)

The caring experience

For those who had grown up always having a family member needing care, "it’s just part of my life" and they "can’t imagine it any other way". They are "used to" the person and their needs, "know how to do everything",and "have always helped out" . In contrast, those who had experienced a distinct change in their family situation were more aware of having made adjustments in their lives.

A number of young carers viewed themselves as being intrinsically caring, while others felt the role had nurtured this aspect of their personality. There were expressions of both enjoyment in caring ("it’s actually quite nice to do") as well as times or tasks which could be annoying or frustrating ("I enjoy it, but then there’s times when you don’t enjoy it"). Even within the same family, there may be different responses: "I enjoy it and it gives me a sense of meaning and satisfaction … my [sibling] hates it." Some felt caring enhanced family relationships and closeness, but there were also instances of tensions around caring.

Some young carers considered caring had little impact on their lives, or certainly not negatively:"I think I’m pretty happy with my life. It’s pretty balanced … I still have time for social; it doesn’t interfere with my school work." Others had experienced restrictions on their social life, either imposed on them, or from their own sense of obligation.

Sometimes I’d have to come home early from somewhere … to do something. (Young carer)

I very consciously avoided after-school activities … There was a sense that I felt unable to do that. [My parent] might have said, ‘Don’t be silly, go and do it’, but I felt an obligation to be at home and to be helping. (Young carer)

Three mentioned very occasionally missing a day from school because of care needs at home. Worry about a family member, as well as tiredness from caring, could intrude at school. On the other hand, school could be a place to have a break from the caring role:

I was kind of happy to get away [from home to school, and] … purposely didn’t think [about caring]." (Young carer)

One mentioned difficulty fitting in homework around caring and a lack of understanding from teachers about the home situation.

The only physical health impact mentioned was "a bit of a back injury" through lifting prior to the family getting some equipment to help and learning better ways to lift. Several young carers talked of worrying about their family member’s health or care either in the present or regarding what might happen in the future. Three had already left home; some had uncertainties about leaving home in the future because of the effect this could have on caring arrangements, even while aware they could leave with their parents’ encouragement and blessing.

On the parents’ side, none identified any negative effects from caring on their children’s education or health, and only one mentioned some limitation on their social life. All recognised effects, largely positive, on the children’s personalities, commenting on their maturity, independence, responsibility, capability and understanding of difference and disability. The children were thought to have developed awareness and understanding from their experience of illness and disability. Parents were also cognisant that their children sometimes have concerns about family health needs or frustrations with caring.

Choice and responsibility in caring

The question of choice in relation to children becoming involved in caring has been raised in the literature (Aldridge & Becker 1993; Dearden & Becker 1997; Eley 2004) and also arose in this research. Some parents were very clear that, in their view, the children could choose whether and how much to help. Others viewed caring more as an obligation, or recognised choice is limited at times when other carers are not available. Giving their children choice was voiced more strongly by those parents who were themselves caring, and obligation by those parents who were supported.

I don’t tell them, ‘This is what you have to do; you must do this.’ No, if they refuse, then that’s ok. They can choose; it has to come from them. (Parent)

[Within families, caring is] just something that you have to do, I think. I don’t think you have much choice. (Parent)

Among the young carers, there were those who said they actively chose to care: "I ask if I can do that" (Young carer). Others simply considered it to be part of the way their family is. A third group described a sense of obligation to care, particularly if no-one else was available, even while they might recognise this was not the parent’s intention. These positions were not necessarily clear-cut; for example, both "wanting" and "having" to care could occur together, as could starting from choice, but later feeling this had become obligation. However, obligation did not necessarily imply the young carers were unhappy about the situation.

[With family members] you’ve kind of got no choice, you have to help them, but it’s also for a good cause so you enjoy helping them. (Young carer)

Initially it was choice. Now I’m not sure if it’s completely by choice … or it’s more I don’t want to upset things at this point. (Young carer)

In terms of responsibility for caring within the family, some of the young carers considered their parent(s) had overall responsibility, but others named themselves in this role. This could feel a weighty load, and there were some uncertainties about what would happen if they were unavailable to care.

As a family member, I had the most responsibility … a little bit much for my little shoulders. (Young carer)

[I feel] quite responsible … I have to do a lot of it [when others aren’t available] and if I’m not there I kind of feel bad because [family member’s] not getting the help needed. (Young carer)

On the other hand, all the parents viewed themselves as having overall responsibility for managing care within the family, including decision-making and planning for the future. They did recognise their children’s responsibility in both caring for a family member and in self-care, but were "conscious they need to be kids as well" and gave examples of not wanting the children to have too much responsibility:

I couldn’t [leave child in charge], it was just too big a job for a young child. (Parent)

We’ve always made them aware they wouldn’t ever be left responsible for [family member in the future], we’d always have something in place. So they’ve, I think, not felt burdened by that. (Parent)

With both choice and responsibility, we see diverse perspectives on the same situation, and the possibility that what is intended by parents may be interpreted or experienced differently by their children.

External supports for families

Families had various sources of external support, the first being extended family not living in the same household. Some families had had grandparents or aunts and uncles who gave hands-on help with caring, household tasks and/or childcare, particularly when children were younger. Some, however, became less able to help as they themselves aged, or less available because of their own family circumstances and needs. Other extended family members gave emotional support or a listening ear, and some were willing to be more available if required in the future (e.g., to take on a guardianship role). On the other hand, not all had support from their wider family, due to them not living locally, their difficulties coping with a disabled person, or because of estranged relationships.

Some young carers and parents mentioned the support of friends, particularly those who shared the experience of caring. Several families were connected with a church community, gaining support from their own faith as well as welcome and inclusion for the disabled family member and sometimes practical help such as meals. Some participants were linked with support groups, but not all felt the need to be. Two parents mentioned links through support groups for their children with other young people in similar situations and thought it was helpful for them to be able to talk with peers.

Another source of external support was formal, government-funded support. In New Zealand, some home-based support services and community respite may be available to disabled people and their families (Ministry of Health 2009a). Services may be funded through the Accident Compensation Corporation, the Ministry of Health, or District Health Boards, depending on a person’s age and the cause of disability. Eligibility for services is determined through a Needs Assessment and Service Co-ordination (NASC) process (Ministry of Health 2009c). Some services (e.g., household management) are income tested (Ministry of Health 2009b).

Most families in this study had had a needs assessment and some were currently receiving services (home help, carer support, and/or respite services). Among parents, there were mixed experiences of the assessment process and what was provided, from satisfaction to having to defend the ongoing need for support or "stamp my feet and throw tantrums" to get what was needed. Parents felt they had to "be proactive", know what their entitlements were and how the system worked. Several barriers to accessing help were mentioned: knowing what was available; cost for those who have to pay for a service; acceptability (such as cultural factors and having outsiders coming into your home); and being offered only a prescribed entitlement rather than what you feel is really needed. In the last case, the choice was whether to settle for what was offered ("that little bit of help was better than nothing"), "fight" on for what you actually want, or perhaps pay yourself to get a preferred service.

The young carers had not been involved in assessment processes, saying this was something their parents managed. The one young carer who was on her own said her family member was not eligible for some services in part because of her co-residence and assumed ability to provide help: "But because I’m there, she’s not eligible for someone to come in and clean. It’s assumed that because I’m here and I’m working, that all this [occasional paid cleaning] can be afforded … And I don’t have time to go through and do all the stuff." However, the focus of an assessment was the family member needing support, so "…I’m kind of not officially included. The arrangement gets made with [my family member] and so they’re there to talk to her."As a consequence, "I don’t know half of what [the service providers] do, and they don’t always know things from my perspective either." At the same time, she considered it would be difficult for her to take part fully in the presence of her family member because there were things she would not want to say in front of her. This highlights the need to recognise young carers’ roles, and give them their own opportunity for separate assessment. Caregivers’ needs must be considered alongside those of the person requiring support.

Outside help can reduce what the family must do; conversely, a lack of or reduction in other supports will increase family caring, including that by young carers. Some families had experienced changes in the level of external support, sometimes by the family’s choice and other times not. Two families had had help with housework withdrawn because of their income level (with children subsequently doing more).

When the carer started working, we had less time doing the looking after; it was more shared. (Young carer)

We used to have home help as well … and we didn’t have to do as much around the house, but as soon as the home helps were stopped because of our family income level, we started having to help around the house a lot more. (Young carer)

DISCUSSION

Earlier literature has pointed to a number of factors which may influence whether children become carers and what and how much they do. These include the nature and severity of a family member’s illness or disability (Dearden & Becker 1998), the age of the child (Dearden & Becker 2004), gender of both carer and care recipient (Dearden & Becker 1998; Eley 2004), cultural and family mores about caring (Tatum & Tucker 1998; Jones et al. 2002; Robson 2004), whether or not other adults in the family are available and willing to help (Aldridge & Becker 1993; Frank 1995; Dearden & Becker 1998), and the availability, acceptability and cost of external services (Dearden & Becker 2000; Robson 2004).

Within this study, three broad reasons were apparent as to why children and young people were caring, although the mix and weighting of each factor varied with the individual family situations:

(1) Family relationships included some expectations of caring for one another, and children’s helping was a mixture of choice and obligation. In some families, there was a distinct preference for care from family rather than outsiders because of cultural choice and to avoid invasion of one’s space and privacy. In contrast with formal care, family members know each other and know how to care, and there was an easiness and security about receiving support from family. Families adapt and become used to the situation. Sometimes children’s caring was traded-off for other rewards or benefits.

(2) Children’s caring assisted and relieved parents, including at times when they were not available, when they were needing extra help, or they were taking a break from caring themselves.

(3) If formal services or other supports such as extended family are not available, too expensive, or limited in what they offer, children may be needed to help instead. "The kids picked up around the edges" of what was not undertaken by parents or formal providers. Hence, children’s availability, paired with a need which they can meet and perhaps a lack of alternatives, are key factors in their helping.

This study makes a contribution to our knowledge about the experiences of young carers and their families in the New Zealand context. The findings were generally in line with international literature, but are limited by the small number of families interviewed and the restricted range of their circumstances. Nevertheless, some policy implications can be drawn. First, young carers may be a hidden group of carers. The New Zealand Carers’ Strategy now recognises their existence, but health professionals, needs assessors, teachers, and others also need to be aware children and young people may have this role (and that the presence of adult carers does not exclude children from contributing too). Further research is needed to compare young carers with their peers. We know little about the contribution of New Zealand children to work (including caring) within their families and their paid and voluntary work outside the home. A representative survey sample could provide information about the number of young carers, who they support, and what they do. In addition, further qualitative research with a broader range of young carers and their families will increase our understanding of their lives and experiences.

Young caring occurs within the context of family relationships, and as the Carers’ Strategy notes, "It is important to acknowledge that the needs of carers, family, whānau or aiga and the person being supported are often intertwined", and "It is also important to recognise that both the carer and the person they support have rights as well as needs and, at times, these may not be the same." (Ministry of Social Development 2008). As noted earlier, (young) carers may therefore benefit from their own assessment, separate from the person they support. This has been enacted in UK legislation for some time (Carers (Recognition and Services) Act 1995, ch.12, §1; Carers and Disabled Children Act 2000, ch. 16, §1), initially as an option if requested by the carer, but later strengthened by the requirement that authorities inform carers of their right to an assessment (Carers (Equal Opportunities) Act 2004, ch. 15, §1).

The availability and acceptability of external support services will affect how much caring family members, including children and young people, must undertake. Acceptable services which match identified needs must be available. Family and individual members’ circumstances may change, so service provision also needs to be regularly revised and able to be flexibly provided. If services are reduced or withdrawn, children and young people in a family may be the ones who pick up the slack.

Caring may have effects on young people’s education, health, and social activities. There must be recognition of their needs and adequate support for the whole family to ensure young carers’ own health and development are not negatively impacted by any caring responsibilities. The government’s vision for carers in New Zealand is that "New Zealand Aotearoa is a society that values individuals, families, whānau or aiga who support others who need help with their everyday living", and that this will be achieved when "carers have choices and opportunities to participate in family life, social activities, employment and education; and carers’ voices are heard in decision-making that affects them" (Ministry of Social Development 2008). This must include the unique group of young carers and their families.

ACKNOWLEDGMENTS

The study was undertaken through a Health Research Council of New Zealand Disability Research Placement Programme scholarship. Thanks to all the participants who generously shared their time and experiences to make this study possible. The mentorship of Michael Gaffney (Children’s Issues Centre, University of Otago) during the research process is gratefully acknowledged.

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