Respite Care: Benefits to wellbeing

Methodology

Scope

This evidence brief builds on the knowledge already captured by:

• an early draft of an evidence brief that was never completed, tentatively named Care Continuum – Emergency and Respite Care. The draft was developed in 2018, and it has some overlaps with this present evidence brief. The draft focused on respite care within the child protection and edge of care space in other jurisdictions, and stigma within the State care system;
• a report of findings from the Caregiver Survey, How well is Oranga Tamariki supporting its caregivers? published 11 September 2019 (Nielsen, 2019); and
• a report of findings from the UCB/OB Survey, Caregivers Raising Children with the Orphan’s Benefit and the Unsupported Child’s Benefit: A survey of caregivers, published 12 December 2019 (Oranga Tamariki Evidence Centre, 2019).

The literature search for this evidence brief was conducted by Allen + Clarke personnel using the following databases: Google Scholar, ERIC, ProQuest, PsycINFO, and Scopus.

Publication date parameters were set at January 2015 or more recent, with exceptions being:

• literature accessed via snowballing, where such literature provided unique evidence; and
• literature accessed in relation to models of care in other jurisdictions, cited in the early draft, which was published prior to 2015.

The literature relates to Aotearoa New Zealand, Australia, Canada; Republic of Ireland, United Kingdom, or the United States of America.

The United Kingdom Department for International Development (DFID) guidance on assessing the strength of evidence of individual studies guided the quality assessment, with AMSTAR 2 being used for the assessment of systematic reviews.2 In this evidence brief, quality assessment was carried out for articles that contributed to four or more research questions (‘key articles’).

The DFID guidance calls the assessor to first categorise the study by research type and design, and then to assess the report against seven principles through a series of questions. The principles are:

• conceptual framing;
• transparency;
• appropriateness;
• cultural sensitivity;
• validity;
• reliability; and
• cogency.

Studies that were excluded from the scope of this evidence review were authored by undergraduate students whose principal purpose in writing was reflective.

Developing an agreed list of inclusions

The literature search

The initial search of the academic literature returned 2,092 articles. Table 1 shows the results, by search string. The initial search was conducted in Google Scholar. The four other search engines used provided either a very modest number of additional articles or no additional articles.

In each case, the search string was accompanied by the following limitations:

• Must include at least one of the following terms: report, evaluation, review, evidence
• Must not include any of the following terms: dementia, "aged care"
• Publication date range: 2015 - 2020

Scanning the returns

The results were reviewed in-situ, at abstract level, with approximately 150 promising articles then accessed in full-text. Full-text articles were imported to NVivo (via Zotero), where they were scanned and coded to ascertain their relevance for addressing one or more of the five research questions.

During the scan, it was observed that many articles simply stated there to be ‘benefits’ of respite care, often accompanied by a statement to the effect that the benefits of respite care were well understood and accepted. Consequently, the search for ‘evidence’ of the benefits (for children, young people, and caregivers) sought either primary research articles, which presented research findings as evidence; or secondary citations, where articles cite primary research in support their of claims that respite care provides particular benefits. In this latter case, where a secondary citation is used, the original source has not been accessed in the development of this evidence brief. 

Roughly 20 further articles were accessed in full-text, snowballing from scanned articles. Some of the newly-accessed articles were published prior to 2015. These were retained in the inclusions list where they provided evidence that had not been available through more recent publications.

Narrowing the inclusions list

Five literature reviews are amongst the inclusions. Their reference lists were cross-checked against the scanned literature so that full-text articles could be excluded from the inclusions list, on the basis that relevant key findings are incorporated in one or more of the included literature reviews.

Following the scan, with 70 articles remaining, we identified seven articles (key items) that related to four or more of the research questions. We also identified 35 articles that related to just one or two research questions. These 35 papers were re-scanned to ascertain the value of their retention: those that added unique evidence were retained, whilst those that did not offer unique evidence were removed. With the agreement of Oranga Tamariki, the inclusions list was reduced by removing the least useful 20 items, which allowed for the protection of a small number of items that contributed unique evidence.

A further eight items were introduced as a result of the inclusion of material from the 2018 draft.

Assumptions

This evidence brief has been developed from literature about populations of children and young people who experience respite care due to a variety of conditions. Some are welfare-involved, ‘in care’, or ‘looked after’; some have disabilities; some have developmental, behavioural, or health issues – including some whose condition is classed as ‘life-limiting’. Appendix 1 lists the primary literature used to develop this evidence brief, and it provides various attributes of each study, including the condition shared by the population in focus. This approach, of including literature beyond the welfare-involved population, assumes that the majority of the benefits of respite care are the same across these varied populations. The literature has provided the following observation, reported by Leake et al. (2019), regarding the U.S. An estimated 50% of children in foster care can be clinically diagnosed with emotional or behavioral problems (Greeson et al., 2011; Leslie, Hurlburt, Landsverk, Barth, & Slymen, 2004), and untreated trauma-related mental and behavioral health issues are the primary reasons for failed placements (Barth et al., 2007; Oosterman, Schuengel, Slot, Bullens, & Doreleijers, 2007).

Behavioral challenges not only lead to caregiver strain and turnover, but also placement disruptions (Brown & Bednar, 2006; Chamberlain et al., 2008;James, 2004), (2019, p. 286).

If the U.S. context described above is similar to the New Zealand context, then the assumption is reasonable: many caregivers in New Zealand are likely to be caring for children whose needs step beyond the need for a home, with food and shelter – not to mention the trauma that many children are likely to experience from being separated from their caregiver(s). Thus, the needs for and benefits of respite care may be relatively uniform regardless of the condition experienced by the population in focus.

Limitations

When considering the information provided in this evidence brief, it is important to recognise that, although the search of the literature was relatively detailed and extensive, it is likely that some research or reports that address the key research areas were not identified in the search, and are therefore not included in this report.

Furthermore, the quality of each study was assessed only for six of the articles that contributed to four or more research questions (‘key articles’).3 This report also includes information from material which was not formally assessed for methodological robustness. We have also included information sourced from individual studies, which may be more subject to bias than research that collates findings across several studies and analyses the results as a whole. While we have attempted to address these limitations by clearly indicating the source of information presented in this evidence brief, it is important that the information presented from non-systematic reviews or individual studies is interpreted with caution.

Most of the evidence included has been sourced from outside of Aotearoa New Zealand, primarily from the U.S.(n=15) and the U.K. (n= 8). Although the selected jurisdictions are broadly similar to Aotearoa New Zealand, care needs to be taken when generalising the findings to the unique cultural and environmental context of Aotearoa New Zealand.