Caregivers of Children series: Social Support
iNightingale has started a series of literature reviews. We take a peer reviewed journal article and report on it so that you can have access to the latest scientific research. Our first literature review series relates to caregivers of children, what strategies are most effective and the long term impacts of caring for a child. We will take a series of articles, break down what the researchers were hoping to establish, provide the findings from the research. In turn, we will interpret these findings for you as caregivers and how their findings should be used by you on a day-to-day basis.
To start us off, we review Elizabeth Gage’s research conducted in 2012 that was published in the journal, Sociology of Health & Illness. Gage (2012) collected interview data from 76 parents of children with cancer to ascertain their ability to sustain social support, their ability to seek support and identify their challenges with maintaining that support. The author asserts that the caregiver stress relating to the experience of childhood cancer can be eased by social support as it improves coping ability and improves psychological outcomes.
It is important to recognise that these social relationship can be complicated. The dynamics and history between people, where boundaries lie, mobilising that network of people who are willing to help. It is complex. The author aimed to investigate these complexities and when this social support was most helpful. She discusses that other research has found that social support is more forthcoming around the acute crisis phase and erodes over the chronic phase. This is can be an issue as other research has found that the stress experienced by caregivers is ongoing well into the off-treatment phase and chronic phases of their child’s illness. It could therefore be argued that continuing that social support to extend it into this chronic phase equally as much as the acute phase, given stress levels are consistent in both.
Family, I don’t know…yeah, there was support, you know, they’d come see you in the
hospital and stuff. Just like anything, like when there’s a death or something, everybody’s
there for a couple weeks and then they kind of get sick of hearing about it. [My daughter
has] such a long road.
This research found consistency amongst caregivers where the interpreting of nebulous offers of help into tangible actions can be difficult. Difficulty distinguishing offers of help from polite gestures of sympathy was also common and this resulted in parents perceiving that they received less help than they needed or anticipated. This complexity resulted in difficultly for caregivers to sustain support over time. Feelings of isolation also resulted.
We don’t have any family around us unfortunately. [My husband]’s family is the closest
because they’re in [nearby state], so occasionally his mom offers to come and help. It’s
hard, from the very beginning people were always offering, ‘If there is anything I can do’
and I totally appreciate the fact that they make that offer, but it’s hard, there’s nothing
anybody can do. You know? It would be helpful if somebody did my grocery shopping
[laughs] because there are times when you just can’t get to the store, that kind of thing.
Seeking help with household chores, transportation, meal preparation and childcare were consistently difficult for caregivers. The relationship that existed before the child’s diagnosis is most commonly quoted by families as the most effective support. Helping someone at this time is a very personal experience. It requires considerable coordination between helper and primary caregiver. It often requires involvement or exposure to very personal information, such as the financial impact of the caregiving, or insight into the child’s progress. This was where the research found that support was most effective where there was a close and trusting relationship before. This close relationship facilitated honesty and openness about the caregivers’ needs and made it easier for the caregiver to marshal support.
That ﬁrst summer was very rough. Again, one of the reasons why we’re ﬁne ﬁnancially is
because my in-laws after a couple weeks looked after both [of our children] so that we
could handle all the…medical expenses. So without having to pay for day care, we were
ﬁne…So we’re probably running through $700–800 a month. Like I said, with my in-laws
watching the kids, then we were ﬁne
These close networks were most effectively used to provide support with household chores, childcare, transportation, meal preparation, homework and schooling tasks. The broader network, such as co-workers and acquiantances were consistently noted as offering support but difficult to know how to mobilise their offers into tangible tasks. These extended networks were effectively managed by a close member which separated the uncomfortable task of seeking support by the primary caregiver. Extended social support generally formed financial donations, messages of support and charity rather than support with day-to-day life such as household chores.
[My husband’s] co-workers actually got together, took up a collection at work and they
did the ramp, they did it in one day. Because [my son] needs to be in a wheelchair because
he’s not supposed to put any weight on his one leg. They donated all the funds for the
wood and everything, which was great
Another very effective technique used by carers was to identify precisely the tasks that were needed and asking for that directly. This allowed the support network to understanding exactly what was needed and go about working toward that task.
While we’ve been [in the hospital] for the last 30 days, I contacted one of my brothers and
said, ‘Okay, organise a dinner committee’ and I gave him the names of people that said
they’d do anything for us, all family members. Everyday Monday through Friday we had
dinner delivered to us. We were at the hospital rotating people all the way through which
worked out really, really well for us and for them. We got to see them, they got to see us,
they got to see [my sick son]. It was good for everybody.
The researcher acknowledges that the limitation of this research lies in that it cannot exclude personality traits from the caregivers’ experience. For example, where those caregivers who inherently possess good leadership skills , good organisational skills or extroverted personalities may have a more positive experience with social support than those without these characteristics. However, this research is important when building suitable strategies to mitigate the long term stress and anxiety that is evidenced in caregivers.
Utilising social networks are well established in wider research to be of considerable value. Social networks act as a buffer from the negative experience of caregiving for your child who is unwell and those that mobilise social support have less long term impacts, such as anxiety and depression. Having a greater understanding of how these social networks can be used effectively and when they are less effective is critical to ensure that this resource is helpful to you and acts as that buffer. Key strategies include:
- Close and trusted people are the most helpful to you in providing support with daily living, such as household tasks, meal preparation, transportation, amongst others
- Close and trusted networks are intimate relationships and there is less pressure to observe social norms of ‘politeness’ and privacy, so caregivers feel more comfortable in placing this increased burden on such relationships
- Support from the broader network was most effective when it was unobstrusive and required little marshalling by the caregiver, such as co-workers taking a collection, or rallying a working bee to complete a specific task
- Direct requests for help are the most effective at acquiring the help that is needed, so developing a list of very specific tasks that could be delegate to the social network will be most effective
- Recognise that support will be required for the long term, both in the acute phase and as time goes on into the chronic or off-treatment phase, so maintaining this support and communicating your ongoing needs is crucial
Gage, E. (2012). The dynamics and processes of social support: families’ experiences coping with a serious paediatric illness. Sociology of Health & Illness. 35(3), 405-418.
What have been your best strategies for using social support? Have you also found that those close to you are the most easily integrated into the “inner sanctum” of this experience?