PMC:4694192 / 5366-14144 JSONTXT

{"target":"https://pubannotation.org/docs/sourcedb/PMC/sourceid/4694192","sourcedb":"PMC","sourceid":"4694192","source_url":"https://www.ncbi.nlm.nih.gov/pmc/4694192","text":"Types of peer-to-peer support\nThe support for families in the NICU can be as unique as the families themselves. All types of support can be provided by mentors from peer support organizations, whether they are hospital-based or community-based; support provided may be emotional, informational or tangible, which might include concrete physical, financial or material assistance.27\nA variety of models for providing peer support exist, and many parent support organizations offer blended models in which parents can utilize more than one—and sometimes even all—modalities. Frequency of contact and duration of contact during the NICU stay and beyond to home are dependent on each program and on individual participants.\n\nIn-person support or telephone support\nIn this model, veteran parents are closely matched on as many dimensions as possible (language, culture, baby's diagnosis, family makeup and so on)10, 18 with current NICU parents to serve as their mentors or ‘buddies'. Through the relationship that parent mentors establish with new NICU parents, they can normalize the parents' situation18, 31 and help them accept it by modeling a positive attitude.22 Mentors can reduce parents' isolation,18, 29 sometimes even serving as substitute family and friends.10 This may be particularly important to low-income parents who may not have well-functioning support networks of their own.22 The support is provided in non-medical language that is easier for parents to understand than that provided by the health-care team.22 Mentors can also give parents practical advice, help them resolve day-to-day problems12 and help them access other services.22 Although parents may feel that they need to ‘hold it together' when dealing with the medical team so that they appear capable, having a support person not affiliated with the medical team allows parents to let their guard down and express their true emotions.16 Within the frequently changing NICU landscape, a parent mentor can provide a parent with continuity of care throughout their NICU experience and even beyond.29\nOne potential shortcoming of this model of support is that it may be difficult to ensure that all matches between mentors and parents are good ones, especially when parents are non-English speaking and/or from different cultures.10, 18 Communication styles, parenting styles, outlook on life and parents' vision of the future may differ in a particular match.18 Matches may also become problematic if the mentor parent has not experienced what current parent is going through,10 especially if the mentor's child is doing better than the matched parent's child.18 For any of these reasons, matches may need to be changed.\nProviding peer support by telephone, instead of in-person, may offer several advantages to stressed NICU parents who may not have time or the ability to meet with their peers and friends.27 Connections between mentors and parents can occur more spontaneously and with greater flexibility.16, 32 Mentors' around-the-clock availability, when parents need them, gives parents a feeling of dependability.18 In addition, telephone support is private and non-stigmatizing.32 It can be effective for low-income mothers with diverse ethnic backgrounds,16 and is easily accessible to all regardless of socioeconomic status or geographic location.33 Another important benefit is that parents do not need child care in order to make use of telephone support.16\nFinding appropriate matches for telephone support relationships may be difficult, just as with in-person matches. Parents may ultimately not find their match to be helpful,16 and either party can lose their match's phone numbers that can end the relationship or mentor parents may be negligent in following through. Alternatively, parents with babies in the NICU may simply be too busy to utilize phone support.18 Among the studies on the value of in-person or telephone peer support for NICU parents, mothers were the primary recipients of support services; there is minimal research on how fathers might utilize and respond to peer support in the NICU. This should be an area for future research.\n\nParent support groups\nParent support groups can be run by a veteran parent in collaboration with a NICU staff medical (nurse or doctor) or mental health (social worker or psychologist) professional; or groups can be run by parents only or professionals only. However, groups have greater stability and longevity if they are jointly run by a parent and a NICU staff person.24 Parents may prefer to have counseling professionals over medical professionals as group leaders.34 Groups generally have goals of providing information and education, as well as support to parents.29, 31 Through participation in a group, parents learn how to interact with their babies and get more involved with their care; subsequently, parents gain greater confidence in parenting.25, 29, 31 Group participation further leads parents to visit their baby more often in the NICU and to show greater interest in their baby's development after discharge.25 In the group, parents also get coaching on how to interact and collaborate with baby's medical team,29 and learn how to communicate more effectively about their baby's and their own needs.31 Parents get insight into their feelings, feel less isolated29 and have the opportunity to interact with others who are in a similar situation.31 Another benefit that may be seen when NICUs offer support groups is that the NICU staff can become more responsive to the needs of families through hearing about parents' concerns.31\nHowever, not all parents find value in group support;34 participating in a group may actually increase some parents' stress.29, 30 They may not feel comfortable sharing in a group setting in front of strangers,30 and may not want to hear other parents' stories about the complications their babies encountered.17\nIt can be challenging to establish and maintain group attendance,34 especially in smaller NICUs. Groups may be poorly attended by new mothers who are depressed,35 and parents whose babies have shorter stays may not feel the need for group support.36 Other barriers to parents' use of support groups include their lack of child care and/or transportation34 and the inconvenience of evening meetings for some parents.17 For all these reasons, outreach from either NICU staff or veteran parents is required to encourage parental involvement. Parents may be more likely to attend groups if the groups are identified as being primarily educational in nature, rather than ‘support groups'.\nIf professionals run support groups, then it is important that they allow participants to learn from each other by giving up their role as expert. Changes in hospital staffing, or lack of commitment of group leaders to continue the group in spite of obstacles, may lead to a group's dissolution.24\n\nInternet support groups\nParents of NICU babies are increasingly turning to Internet support groups and web pages, with the profusion of parent support organizations that now have an online presence. These sites may be monitored by veteran parents and/or by health-care providers including social workers or nurses,37 although there is potential for the presence of professionals to inhibit parental exchanges.27\nA key benefit to Internet support is that parents can access support on sites tailored to their needs anytime and from anywhere,27 which may be particularly beneficial to parents who reside in rural areas,38 and to young single mothers and those who are socially isolated.27 Variables that can inhibit face-to-face communication, such as differences in gender, age and social class, are reduced when parents interact on websites.39 Parents have access to both information and support, and if they are socially sensitive, they can anonymously read others' posts. The collective knowledge of the group is available to all, regardless of their participation level.27 Information can also be imparted through live chats online; these can be moderated by professionals, increasing their value.37 Many parents find Internet support sites to be especially helpful after NICU discharge.\nThere are several potential drawbacks to parents' use of Internet support sites. Emotionally charged or negative interactions, including abrasive or non-supportive posts, may occur as a result of the reduced social presence people have online.27 Information that is shared between parents may be misleading or unreliable, especially if the site lacks professional oversight to ensure that discussions between participants are medically sound. Veteran parents need to make it clear that they are not medical providers and that parents should consult their child's own doctor for medical 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