Journal of Psychosocial Nursing and Mental Health Services

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CNE Article 

Siblings of Individuals with First-Episode Psychosis: Understanding Their Experiences and Needs

Jacqueline Sin, BSc(Hons.)-Thorn, BN, BGS, PgCertCPN, RMN; Nicki Moone, BSc(Hons.)-Thorn, Dip. Nursing, RMN; Paul Harris, BSc(Hons.)-Thorn, Dip. SW

Abstract

The growth of early intervention in psychosis services (EIPS) has prompted needed research to provide a robust evidence base to underpin practice. The typical service model embraces key psychosocial interventions, including family interventions. A literature review revealed a number of relevant studies that recognized the role of siblings in families affected by severe mental illness or mental impairment, but little was found about the impact of first-episode psychosis on siblings. To address this apparent oversight, we conducted a study to gain an understanding of sibling experiences. Ten siblings (ages 16 to 30) with a brother or sister diagnosed with first-episode psychosis took part in individual semi-structured interviews. The key findings were grouped in regard to emotional impact, relationships in the family, and siblings’ roles and coping patterns. The study also revealed that families are able to identify positive gains out of a fundamentally negative experience.

Abstract

The growth of early intervention in psychosis services (EIPS) has prompted needed research to provide a robust evidence base to underpin practice. The typical service model embraces key psychosocial interventions, including family interventions. A literature review revealed a number of relevant studies that recognized the role of siblings in families affected by severe mental illness or mental impairment, but little was found about the impact of first-episode psychosis on siblings. To address this apparent oversight, we conducted a study to gain an understanding of sibling experiences. Ten siblings (ages 16 to 30) with a brother or sister diagnosed with first-episode psychosis took part in individual semi-structured interviews. The key findings were grouped in regard to emotional impact, relationships in the family, and siblings’ roles and coping patterns. The study also revealed that families are able to identify positive gains out of a fundamentally negative experience.

Ms. Sin is Education and Practice Lead in Psychosocial Interventions, Berkshire Healthcare NHS Foundation Trust and Thames Valley University, Ms. Moone is Clinical Nurse Specialist, Family Work for Psychosis Service, Reading Community Mental Health Team, Berkshire Health-care NHS Foundation Trust, and Mr. Harris is Team Leader, Early Intervention Team, Wokingham District Council Community Services/Community Mental Health Team, England, United Kingdom. The authors’ “Thorn” qualification represents accreditation by the Psychosocial Interventions for Psychosis Programme in the United Kingdom.

The authors thank all of the siblings who participated in this study and shared their experiences.

The authors disclose that they have no significant financial interests in any product or class of products discussed directly or indirectly in this activity, including research support.

Address correspondence to Jacqueline Sin, MSc, BSc(Hons.)-Thorn, BN, BGS, PgCertCPN, RMN, Prospect House, Prospect Park Hospital, Honey End Lane, Reading RG30 4EJ, England, United Kingdom; e-mail: jacqueline@urbanfuture.org.

Despite an international focus on developing services to meet the needs of young adults with first-episode psychosis and a family-inclusive approach advocated to underpin such services in England (e.g., Department of Health, 2001; National Institute for Health and Clinical Excellence, 2002), provision of services varies. A recent review of the literature on caregivers’ needs and services in early intervention in psychosis services (EIPS) suggested that the family inclusiveness often means a parent or major caregiver is acknowledged and the needs of the overall family (especially siblings) are overlooked (e.g., Sin, Moone, & Wellman, 2005; Stalberg, Ekerwarld, & Huffman, 2004).

As highlighted in many studies in EIPS, the onset of psychosis has a profound effect on families and individuals as they struggle to come to terms with significant changes in their loved ones’ lives within the family (Jackson, Knolt, Skeate, & Birchwood, 2004; Patterson, Birchwood, & Cochrane, 2002). In early intervention literature, siblings’ contributions as secondary caregivers in supporting their parents and engaging their brother or sister in normalizing activities are widely recognized (Birchwood, 2003; Sin et al., 2005). In addition, siblings of individuals with first-episode psychosis may also perceive themselves as being at higher risk than the general population for developing mental health problems, similar to assumptions of siblings of individuals with other severe mental illnesses, due to increased stress and hereditary factors (Greenberg, Kim, & Greenley, 1997; Stalberg et al., 2004). These worries and fears, coupled with the possible effects of and disruption caused by first-episode psychosis and the various roles often undertaken by siblings, indicate that siblings’ needs should be considered paramount.

Background and Study Aims

This study follows a previous phenomenological study that focused on caregivers of young adults with first-episode psychosis in Berkshire, South East England, from July 2003 to April 2005, in which parents of 9 local EIPS users were interviewed. (See Sin et al. [2005] for full study details.) Although parents often reported difficulties in helping others in the family adjust and cope, especially younger children (siblings of the service users), the study revealed that the service typically overlooked siblings. This conflicted with its family-inclusive philosophy, although it provided a well-established Family Work for Psychosis Service and offered a range of local caregiving services (Moone & Sin, 2007).

Therefore, the aim of this study was to explore the experiences and needs of siblings (ages 16 to 35) whose brother or sister has a first-episode psychosis within a community-based EIPS population in South East England. The findings will help practitioners in mental health, primary health care services, and educational settings to understand siblings’ needs and experiences, and will inform further service provision and mental health promotion at both local and national levels.

Literature Review

Previous qualitative studies have concentrated on whole family experiences of individuals with long-term and established severe mental illness and learning disabilities, rather than only on siblings. The average age range of siblings in those studies is late 30s to 50s, and many of those are siblings who inherited the primary caregiving role from their aging parents (e.g., Hatfield & Lefley, 2005; Smith, Greenberg, & Mailick Seltzer, 2007).

Despite these studies not being specific to first-episode psychosis, some of the findings are relevant to the experiences of siblings. For example, findings suggest that female siblings are more frequently involved in providing care, and female service users often receive more care from family members (Greenberg, Seltzer, Orsmond, & Krauss, 1999). These findings are understood to reflect the socialization of female gender roles as caregivers, as well as female service users being less associated with challenging behavior, compared with male service users (Greenberg et al., 1999; Lohrer, Lukens, & Thorning, 2007).

The quality of the sibling relationship, especially during adolescence, is a predictive factor in the siblings’ future involvement with caregiving (Greenberg et al., 1999; Smith et al., 2007). Adolescence is a stage of life during which siblings may be particularly sensitive to the social stigma of a brother’s or sister’s disability (Jewell & Stein, 2002; Seltzer, Greenberg, Krauss, Gordon, & Judge, 1997). Supporting and educating siblings about mental illness may help them develop a deeper understanding of their brother’s or sister’s experiences, which may foster a closer relationship (Greenberg et al., 1997).

Although literature related to siblings and first-episode psychosis is limited, a small-scale qualitative study conducted by Fisher, Bordass, and Steele (2004) reported that siblings of young adults with first-episode psychosis share many similar experiences with siblings of individuals with long-term mental illness. However, Fisher et al. (2004) identified that siblings of individuals with first-episode psychosis have a lower awareness of genetic vulnerability and are less involved in practical and day-to-day caring for their brother or sister, a finding that is discrepant with those of previous studies. Siblings of individuals with first-episode psychosis often act as a valuable resource for their brother or sister in engaging in recovery and normalizing activities (Birchwood, 2003) and providing opportunities for socializing (Stein & Wemmerus, 2001).

Method

This study used a phenomenological approach to capture the lived experiences of siblings who have a brother or sister with first-episode psychosis. The study received ethical approval from a local research ethics committee and the National Health Service site from which siblings were recruited. Siblings ages 16 to 35 with a brother or sister receiving a service from the local EIPS in Berkshire, South East England, were identified and invited to participate in the study. Ten siblings of 9 individuals diagnosed with first-episode psychosis have been interviewed to date. Demographic details of the sibling participants described in this article are summarized in Table 1 and those of their service user brother or sister are shown in Table 2.

Demographic Details of the Participating Siblings (N = 10)

Table 1: Demographic Details of the Participating Siblings (N = 10)

Demographic Details of Service Users (n = 9)

Table 2: Demographic Details of Service Users (n = 9)

Data were collated using inductive semi-structured interviews, guided by a questionnaire developed and piloted locally, using open questions to elicit the siblings’ experiences and needs. References and ideas for the questionnaire were developed from the questionnaire used in the previous study with parents (Sin et al., 2005) and other existing questionnaires (e.g., Gerace, Camilleri, & Ayres, 1993; Stalberg et al., 2004), which tended to explore subjective and objective burden of care, rather than the overall experience.

Each interview was conducted in the siblings’ own home and lasted no more than 1 hour. Informed consent was sought before the interview, which was audio-taped and then transcribed. Data from the interviews were analyzed using the responsive-reader method (Porter, 2000; Sherblom, Shipps, & Sherblom, 1993) using ATLAS-ti (version 5.2).

Results

Emotional Impact

All participating siblings described feelings of being over-whelmed by the psychological impact of the brother’s or sister’s onset of psychosis and the subsequent impact on their own lives and emotional well-being. A wide variety of emotional responses were identified and ranged from resentment and blame to guilt, loss, and embarrassment. The siblings also described the effects on their own mental health and the worries and fears they had both for themselves and for their brother or sister. A younger sister described how she felt when her sister first became unwell:

I couldn’t sleep in the night.... I would be crying day and night, I think because I used to go there [hospital] and the things she was saying…. I had so many problems, I couldn’t eat or sleep, and that just affected me badly.

A number of siblings talked about shame and embarrassment and said they did not talk about their ill sibling, even to their best friends. They stopped inviting friends to the home because they were worried their brother or sister might do something embarrassing. Siblings who were still in school described the difficulty they had when encouraged to share their experiences with teachers following changes in their own academic and social performance.

They often chose not to disclose the problems at home, worrying about stigma and lack of understanding from others. They described a paradox of resentment against their brother or sister for taking up so much of their parents’ time and a sense of guilt for not being able to be more empathetic and supportive, as reflected by the following quotation from a 17-year-old younger sister:

I don’t feel that I need any attention or whatever; I am old enough to understand, but you still want certain amount of attention from your parents. I don’t see Mum that often, and when I see her, it’s working around my brother.

Relationships in the Family

The effects the siblings perceived on the whole family were centered on concerns about their other siblings, particularly the younger ones, the strain on their parents who usually acted as the primary caregivers, and their own relationship with their brother or sister with first-episode psychosis. A few siblings described how their own and their other siblings’ perspectives on future relationships and childbearing have changed as a result of witnessing the distress of first-episode psychosis on their brother or sister.

Respondents described their concerns about other siblings, especially those younger than age 16, because they were conscious that their younger siblings had sensed a change in their brother or sister but did not understand the nature of the illness or the effect it had on others. Within the family, there was uncertainty about the kind and depth of information that should be shared with the younger siblings—possibly due to the parents’ confusion and desire to protect their children—while the family struggles to adjust. A 21-year-old sister described her concerns about her 10-year-old sister in relation to their brother’s illness:

The relationship between my brother and my younger sister has certainly changed. They were very close; she used to be able to joke about with him, play with him, and laugh with him, but she is almost uncomfortable around him because she has so many people saying “young brother’s unwell.” It makes her…very scared and skeptical about everything; it affects her in quite a big way.

All of the siblings interviewed identified their parents, particularly their mothers, as taking on the sole responsibility for supporting and caring for their brother or sister with first-episode psychosis. In some cases, the mothers gave up their work and employment and made major changes in their lifestyle to care full time for their son or daughter. The siblings interviewed described their worries about the stress and strain faced by their parents. One older brother said, “I think everything has just sort of come down on Mum, like she doesn’t really have a life anymore.”

Among the siblings interviewed, 2 sisters talked about how their experiences of their brothers’ illness had challenged their thoughts about future relationships and raising children. One sister talked about her concerns related her other older brother:

He decides to distance himself from it. He’s the opposite to me. I [would] rather know, but he [would] rather not know; he cannot deal with it. He’s split up with his girl-friend, and one of the reasons is that he didn’t want children.

While talking about her own position, she said, “I certainly don’t want a child like my brother.”

Siblings’ Roles and Coping Patterns

A number of the siblings interviewed believed the most important contribution they made was supporting their parents as the primary caregivers. Some siblings reported sharing the caregiving and monitoring role with their parents in regard to symptoms, medication, and practical support. One 16-year-old brother described how he supports his parents:

When Mum goes out, I have to stay in the house with him [his 20-year-old brother with first-episode psychosis], make sure he’s safe. When he’s suicidal…[I] make sure there’s nothing around, any knives or anything like that.

To cope with their brother’s or sister’s illness and support them, many siblings identified the need for information about the illness, its prognosis and treatment, and communication and coping skills that may enable them to more effectively manage their siblings’ symptoms and behavior. Many participants believed they had received the information they had on their brother’s or sister’s illness indirectly through their parents or their own Internet searches.

Despite often being involved in various recovery activities with their brother or sister, many siblings believed such involvement was part of a conventional sibling relationship. Many of the siblings interviewed perceived their role as their brother’s or sister’s social companion and involved them in their own circle of friends and social engagements (e.g., going to pubs, having lunch on weekends).

Siblings generally believed it is important and therapeutic for their brother or sister to be socially included and active, as much as possible. A younger sister described her ways of supporting her 29-year-old brother: “I mean we meet up and…go out for drinks, things like that. I think it’s important that he feels included.” Another younger sister said, “I try to keep everything normal. I try to speak to him as if he’s not ill. I talk to him as I normally would, and we laugh and we joke.”

Some siblings seemed to find the entire experience overwhelming and tended to distance themselves from direct involvement with their brother or sister. One 20-year-old younger sister said, “I don’t think I’m there to help or anything. I’m quite helpless.”

Positives Out of Negatives

Despite the overall disruptive effects of psychosis on families, many of the siblings talked about how the experience enhanced their personal development. They described being more understanding, sensitive, and considerate, and said the onset of psychosis meant they had to be more supportive to the family as a whole, both emotionally and practically. One younger sister said, “I had to do more around the house; I have to be more considerate,” and another younger sister said, “It’s made me grow up quicker; it has some good effect as well because it’s made me… open up to how people feel and be more aware.”

Most of the siblings described that the relationship had changed since their brother or sister became unwell. They highlighted that despite initial difficulties in adjusting to changes brought about by the psychosis, many of them believed they and their brothers and sisters had developed a closer relationship and a stronger sibling bond. Some siblings described feeling that they valued their brother or sister more and were more conscious of being supportive and considerate with regard to their siblings’ needs. A sister said, “We became closer. She depends on me for any help; she’s always welcome here [the younger sister’s house]. It’s brought us much closer than before.”

Many siblings described how they and their families had become more resilient, working more as a cohesive family unit and being more supportive of one another. At the time of the interviews, a number of siblings believed their families as a whole had become stronger and more able to work through difficulties together. Two younger sisters, describing the resilience that had developed, said, “I think it made our family a lot more close-knit actually,” and “I think it’s caused my parents to become more aware of what he [her older brother] needs and what we all need.”

Useful Resources for Siblings

The siblings also identified services that would be useful for them. Some wanted information that is phase specific and tailored for the service users and their families and accessible in a variety of ways (e.g., through Web sites, an information pack, family-based psychoeducation sessions). Others indicated that education on coping and communication skills would be helpful for them, as they had struggled to know how to respond to some of the illness behaviors exhibited by their brother or sister. They worried that saying or doing the wrong thing would have a negative effect on their siblings. Many siblings wanted to know how they could be more supportive in their interactions with their brother or sister.

The need for peer support groups specifically for siblings to both gain information and share experiences was highlighted by a number of siblings. Some siblings specified that existing services tended to center on meeting the needs of parents. The siblings reported that even if they attended the caregiver support group with their families, they were mindful not to voice their concerns, worrying that this would put even more pressure on their parents. A small number of siblings believed they would benefit from a hotline service through which they could contact other siblings, particularly at times of crisis, to give them some reassurance and support.

Discussion

In light of the findings of this study, some resonance is identified with previous studies that targeted siblings of individuals with established severe and persistent mental illness. The effects of first-episode psychosis on siblings is significant and may be similar to the experiences of parents (Fisher et al., 2004; Stein & Wemmerus, 2001).

It is evident that siblings struggle with being able to ask questions and seek support from their parents, whom they already perceive to be under considerable pressure. Despite adopting a family-inclusive approach, services seldom seem to reach all family members. There are a number of possible reasons for this. Parents sometimes are very protective of their other children and tend to shield them from the primary caregiving role and contact with mental health services (Sin et al., 2005). On the other hand, services such as EIPS, family interventions, and caregiver support services are designed to meet the needs of primary caregivers (parents in this instance). Current services do not usually have effective systems or resources to seek out and involve siblings in the first instance (Sin, Moone, & Newell, 2007). Even when siblings have sought out these services, they have found themselves a minority group among parents and other caregivers. In addition, some siblings reported that available services did not provide settings appropriate to voice their particular concerns and discuss issues such as resentment, grief, and guilt without their parents present. EIPS and other services for siblings need to be sensitive to their unique needs and life circumstances.

All of the siblings interviewed in this study reported that they would appreciate an opportunity to talk about their experiences and how the onset of psychosis may have affected them. Sadly, most of them reported that such opportunity does not currently exist. All of the siblings reported that they obtained information about the illness indirectly from their parents or through their own Internet search.

Siblings want the mental health services to provide them with succinct and phase-specific information on psychosis in a variety of formats. Siblings want to know about prognosis, communication, problem solving, symptoms, and treatment (Landeen et al., 1992). Although none of the siblings viewed themselves as primary caregivers, they recognized that such knowledge would help them improve and maintain their relationship with their brother or sister. Some siblings clearly viewed their roles as instrumental in their brother’s or sister’s recovery and thus needed the support of services to be effective in this capacity.

Most siblings identified that social stigma and fear of embarrassment stopped them from sharing their experiences with close friends and school teachers. Similar findings were suggested in a study of adult siblings (Lukens, Thorning, & Lohrer, 2002). Mental health promotion campaigns, primary care services, and EIPS need to target youth services and organizations to raise awareness of first-episode psychosis and provide support for siblings.

Similar to findings of previous studies on siblings of individuals with established mental illness (e.g., Greenberg et al., 1999), this study revealed that female siblings tended to be more involved in supporting their brother or sister. This gender-related phenomenon may have contributed to the higher proportion of sisters being interviewed and highlights a possible consideration about service development, if a consistent picture is found with further studies.

On a positive note, resilience was identified by a number of siblings, who considered that they and their families were completing a difficult journey feeling stronger and more cohesive. As research into resilience among people facing the challenges of mental illness is growing, it is important to focus on this positive element of experiences among siblings and families as a whole (Lohrer et al., 2007; Lukens, Thorning, & Lohrer, 2004). It will be useful to identify any markers and elements of support experienced by such individuals to inform further service development.

When this study first began, gathering data on siblings and family makeup from existing notes proved difficult. Despite a family-inclusive ethos underpinning the EIPS, data on all siblings of the service users was not routinely sought. Instead, a named caregiver, usually a parent, is routinely registered in the statutory and voluntary agency records. This may help explain why EIPS and mental health services have not been successful in including siblings in various services. Findings from this study suggest that for services to be truly family inclusive and sensitive to all family members’ needs, family data should be collected using a genogram, and a family meeting involving every member should be offered at the initiation of contact, as a routine service provision within EIPS.

Because a number of siblings voiced concerns about their other siblings, especially younger ones, further studies should try to recruit younger siblings and explore their perceptions of needs. Similar studies can be considered in different demographic and geographical areas to yield area-specific findings to inform the development of services for siblings that are sensitive and flexible.

EIPS, which offer family intervention for psychosis, have reported a lower than expected involvement rate from families that have a young adult with first-episode psychosis (Sin et al., 2007; Slade, Holloway, & Kuipers, 2003). Further studies of siblings’ experiences and perceptions of family interventions may yield useful findings to develop a specific family intervention model for first-episode psychosis, as current family intervention models have all been developed to support families affected by severe and persistent mental illness (M. Kelly, personal communication, October 24, 2006); McGorry, Edwards, Mihalopoulos, Harrigan, & Jackson, 1996). For example, a focus of family intervention for first-episode psychosis might be communication and relationship strains, if study findings suggest that ongoing sibling involvement in care and recovery is directly linked to the quality of the sibling relationship, especially during late adolescence, as suggested by Greenberg et al. (1999).

Limitations

This study is ongoing, and the data reported in this article represent the initial findings. All participants in the study were approached through the service users (as stipulated by the research ethics committee), which may have created a bias toward the general picture of a closer sibling relationship. A higher proportion of female siblings have been interviewed to date, despite the equal gender division among the overall potential sample.

Clinical Implications

As discussed, routine use of a genogram will identify siblings at the first point of contact with mental health services. When a young adult is referred to the EIPS, a meeting involving all immediate family members should be offered in line with a family inclusive approach. Siblings’ roles and functions should be recognized alongside those of the primary caregivers, and their needs for support and services explored.

Service development in terms of psychoeducation, information for siblings, support groups, and other specific interventions should reflect the siblings’ needs identified in this study. Consideration should be given to the ages of siblings, as those who took part in the study were between 16 and 30, a critical period of life in terms of personal and social development. This indicates that partnership between statutory, voluntary, and youth-focused organizations is essential to develop services that are accessible, flexible, and sensitive to the needs of younger people.

Conclusion

This study highlights the importance of siblings in the recovery of a brother or sister with first-episode psychosis. The experiences and needs of siblings are often overlooked while parents (especially mothers) assume the role of primary caregiver. Despite the emphasis on family inclusiveness and a sound evidence base to support family interventions, EIPS routinely fail to recognize the significance of the sibling bond.

Siblings are greatly affected by the onset of psychosis in a brother or sister, and this has a significant effect on their emotional and mental well-being and their social development. Despite the difficulties they experienced, siblings were able to identify some positive outcomes, such as resilience and a closer family bond.

The siblings who participated in this study identified a number of considerations that have important implications for practice and service development. Their comments also underscore the need for further research regarding gender roles and the needs of younger siblings.

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Demographic Details of the Participating Siblings (N = 10)

Variable Finding
Age
  Mean 22.8
  Range
16 to 30
Gender
  Men n = 2
  Women
n = 8
Relationship to sibling
  Older sister n = 2
  Older brother n = 1
  Younger sister n = 6
  Younger brother
n = 1
Ethnic group
  White, British n = 7
  Asian, Pakistani n = 1
  Black, African n = 1
  Mixed race
n = 1
Vocational status
  Full-time employment n = 5
  Full-time education n = 4
  Housewife
n = 1
Living situation
  Resided with sibling n = 4
  at onset of psychosis
  Still residing with sibling at time of n = 1
  interview
  Did not reside with sibling at onset of psychosis nor during interview n = 5

Demographic Details of Service Users (n = 9)

Variable Finding
Age
  Mean 24.2
  Range
21 to 29
Gender
  Men n = 8
  Women
n = 1
Position in family
  Oldest n = 2
  Middle n = 5
  Youngest
n = 2
Ethnic group
  White, British n = 6
  Asian, Pakistani n = 1
  Black, African n = 1
  Mixed race
n = 1
Duration of onset
  Range 1 to 3 years
  Mean 21 months
  1. Siblings are often excluded in early interventions in psychosis services, despite an emphasis on family inclusiveness and their potential value as recovery agents.

  2. Siblings experience a wide range of emotional, practical, and social consequences as a result of their brother or sister developing psychosis.

  3. Some siblings identify that both they and their families have become more resilient, cohesive, and supportive of one another through their experiences of having a brother or sister with first-episode psychosis.

  4. Brothers and sisters are able to identify their own needs for services that are more flexible, accessible, and sensitive to their age range and life circumstances.

Key Points

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Authors

Ms. Sin is Education and Practice Lead in Psychosocial Interventions, Berkshire Healthcare NHS Foundation Trust and Thames Valley University, Ms. Moone is Clinical Nurse Specialist, Family Work for Psychosis Service, Reading Community Mental Health Team, Berkshire Health-care NHS Foundation Trust, and Mr. Harris is Team Leader, Early Intervention Team, Wokingham District Council Community Services/Community Mental Health Team, England, United Kingdom. The authors’ “Thorn” qualification represents accreditation by the Psychosocial Interventions for Psychosis Programme in the United Kingdom.

Address correspondence to Jacqueline Sin, MSc, BSc(Hons.)-Thorn, BN, BGS, PgCertCPN, RMN, Prospect House, Prospect Park Hospital, Honey End Lane, Reading RG30 4EJ, England, United Kingdom; e-mail: .jacqueline@urbanfuture.org

10.3928/02793695-20080601-11

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