Impact of parent peer support to parents of a child with a disability, special needs, or chronic health condition: a national cross-sectional survey

Abstract

Background: The disability sector in New Zealand has come a long way. There was a time when those with a disability were interred in “mental asylums” alongside prisoners and those who were mentally ill. In the 1930s individuals with an intellectual disability were recognised as a separate population and placed in institutions from the age of five years. Institutionalisation dominated the disability sector in the twentieth century. However, the last institution closed in 2006, ushering in an era of community living. The medical model or deficit based view of disability has been replaced in policy and legislation by the social model; however, the medical model still dominates. Despite these apparent positive changes parents who have a child diagnosed with a disability, special needs, or chronic health condition often have higher rates of stress, depression, and parental separation. Parents are required to navigate through a world of medical terms and eligibility criteria as they try to gain support and access to services. Parent to Parent New Zealand provides support to parents and caregivers of a person diagnosed with a disability, special needs, or a chronic health condition. The main way in which this support is provided is through clients of Parent to Parent being matched with a Support Parent, who is someone who has their own experience of supporting an individual with a disability. Although there has been international research on this supportive relationship, there has been no such research in the New Zealand population to date. Therefore the current study sought to answer three questions: who is accessing Parent to Parent NZ, why and what services are the accessing and finally did those who were paired with a Support Parent find the experience useful?

Methods: A national cross-sectional design was employed, utilising an electronically delivered questionnaire via the SurveyMonkey® (www.surveymonkey.com) platform. The questionnaire underwent piloting before implementation. In addition to demographic information, the survey tool used in this study adapted instruments used in previous studies such as the Kansas Inventory of Parent Perceptions (KIPP) and the Parent Coping Efficacy Scale (PCES) to yield quantitative data. Opportunity was given for participants to leave comments which provided support to the quantitative data. Descriptive thematic analysis was used to assess these comments. Participants were recruited through Parent to Parent via their mailing list, electronic media (such as electronic newsletters, Facebook, and Twitter), and their national magazine. There was no restriction on the timeframe in which participants are or were involved with Parent to Parent. The survey was available nationally providing the person had access to the internet. The advertisement placed in the Parent to Parent media supplied a link to an online survey where participants were asked to complete a 10-15 minute survey. The survey consisted of three sections, totalling 28 questions. The first section collected demographic information, the second section collected information on what services participants have accessed at Parent to Parent and why they accessed those services, the third section looked at the impact of being paired with a Support Parent. Reporting followed best epidemiological practice and was informed by the STROBE guidelines (www.strobe-statement.org), which were used as guidance throughout the study.

Results: Of an estimated total population of 10,600 parents involved with Parent to Parent New Zealand, 26 participants accessed the online questionnaire by using a link that was provided on the various advertised mediums. Participants were predominantly New Zealand Europeans from two-parent households. All of the participants were the biological parents of individuals with a disability, special needs, or a chronic health condition. Quantitative and qualitative data was gathered from information provided by the 24 participants who completed sections 1 and 2 of the questionnaire. Further quantitative data was provided by the 19 participants who were matched with a Support Parent at the time they participated in the study. Forty-six percent of contacts with Parent to Parent were seeking information from the organisation. Sixty-seven percent found the information service the most useful service offered by Parent to Parent, surpassing the Support Parent connection at forty-six percent. Overall, participants reported a positive interaction with their Support Parent with sixty-two percent feeling that their Support Parent match worked for them. However, only forty-two percent of the participants gave a positive response to feeling as though their Support Parent gave them someone to talk to about their child’s disability. No significant relationships were found between the participants’ level of existing support (such as partner or family) and the severity of the disability (all Fisher’s exact tests p>0.05). A thematic analysis of the comments made by the participants revealed similar themes previously found in other studies.

Discussion: Despite many efforts, participation in the survey was disappointing. The diminutive sample size meant statistical power was too small to detect significant differences in the quantitative data and so no firm conclusions could be drawn from the results of this study. Whilst the results of this study drew similar themes to overseas research, due to its sample size it can only be viewed as an exploratory piece of work. Further research is still required to determine whether peer support via organisations such as Parent to Parent is an effective tool to assist parents to feel empowered, less isolated and better able to cope.