When a parent has severe difficulties, the whole family is affected in one way or another [1Brent DA, Melhem NM, Masten AS, Porta G, Payne MW. Longitudinal effects of parental bereavement on adolescent developmental competence. J Clin Child Adolesc Psychol 2012; 41(6): 778-91.
[http://dx.doi.org/10.1080/15374416.2012.717871] [PMID: 23009724] -4Maier EH, Lachman ME. Consequences of early parental loss and separation for health and well-being in midlife. Int J Behav Dev 2000; 24(2): 183-9.
[http://dx.doi.org/10.1080/016502500383304] ]. Substance abuse, severe physical or mental illness, violence or death always bring consequences for the ones involved, and the children are especially vulnerable [5Hansson M. Proper support to children in families with addicition and other major dificulties. Interim report of a government comission. Socialstyrelsen: In: Stockholm. 2014., 6National Board of Health and Welfare Sweden Children as next of kin Consequences and needs when parents have serious difficulties, or passes away Socialstyrelsen: Stockholm 2013. Available at: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/19114/2013-6-6.pdf]. First, they are dependent on the affected parent as well as the other parent (if there is one). Second, depending on their own age and development the child might have difficulties in understanding what is happening as well as the causes. Previous studies show that children in these situations have an increased risk of being negatively affected i.e. by their parents’ or own anxiety, changes in everyday life, excessive responsibility, lack of care or other difficult life experiences [5Hansson M. Proper support to children in families with addicition and other major dificulties. Interim report of a government comission. Socialstyrelsen: In: Stockholm. 2014.-8Hjern A, Berg L, Rostila M, Vinnerljung B. Children as next of kin. How is school? Kalmar: In: Nationellt Kompetenscentrum Anhöriga. 2013.].

With reference to Swedish law and in the present study, children as next of kin refers to children (up to 18 years) with parents who suffer from mental illness, severe physical disability, and any form of substance abuse as well as children who have unexpectedly lost a parent or another adult with whom the child permanently lives [9Ministry of Health and Social Affairs Law amending the healthcare. In: Svensk författningssamling: Socialdepartementet. 2009., 10Ministry of Health and Social Affairs. Law of patient safety 2010:659. In: Regeringskansliet/Lagrummet: Social departementet. 2010.]. This includes children with caring responsibilities (comparable with the term ‘young carers’, [11Becker S. Global perspectives on children’s unpaid caregiving in the family: Research and policy on ‘young carers’ in the UK, Australia, the USA and Sub -Saharan Africa. Glob Soc Policy 2007; 7(1): 23-50.
[http://dx.doi.org/10.1177/1468018107073892] ]) as well as those without.

As a result of the Swedish legislative changes in 2010 [9Ministry of Health and Social Affairs Law amending the healthcare. In: Svensk författningssamling: Socialdepartementet. 2009.] children as next of kin have gained increased attention. The aim of this amendment of the law was to emphasize the rights of the child and to strengthen the child perspective. Currently, the law focuses on children as next of kin and first and foremost, their need for and right to advice, support and information. In turn, the National Board of Health and Welfare Sweden (NBHWS) instigated a major development initiative to improve health and social care for affected children.

Between 13 and 17 percent of all children in Sweden experience having a parent with some sort of substance abuse [8Hjern A, Berg L, Rostila M, Vinnerljung B. Children as next of kin. How is school? Kalmar: In: Nationellt Kompetenscentrum Anhöriga. 2013., 12Hjern A, Manhica HA. Children as next of kin to patients in hospitals- How many are they? Report 1 from the project ”Children as next of kin”- a survey (In Swedish). Kalmar: Nationellt Kompetenscentrum Anhöriga. 2013.]. Ten to fifteen percent of children have been exposed to violence [8Hjern A, Berg L, Rostila M, Vinnerljung B. Children as next of kin. How is school? Kalmar: In: Nationellt Kompetenscentrum Anhöriga. 2013., 3Annerbäck EM, Wingren G, Svedin CG, Gustafsson PA. Prevalence and characteristics of child physical abuse in Sweden - findings from a population-based youth survey. Acta Paediatr 2010; 99(8): 1229-36.
[http://dx.doi.org/10.1111/j.1651-2227.2010.01792.x] [PMID: 20219025] ], up to 18 per cent live with a parent who suffers from severe physical disability, and approximately three percent have experienced the loss of a parent [8Hjern A, Berg L, Rostila M, Vinnerljung B. Children as next of kin. How is school? Kalmar: In: Nationellt Kompetenscentrum Anhöriga. 2013., 12Hjern A, Manhica HA. Children as next of kin to patients in hospitals- How many are they? Report 1 from the project ”Children as next of kin”- a survey (In Swedish). Kalmar: Nationellt Kompetenscentrum Anhöriga. 2013.]. Approximately, 30 percent of the children living with a parent suffering from substance abuse or mental illness left elementary school without being eligible to start high school, which in turn constitutes a risk factor for illness later in life [8Hjern A, Berg L, Rostila M, Vinnerljung B. Children as next of kin. How is school? Kalmar: In: Nationellt Kompetenscentrum Anhöriga. 2013., 12Hjern A, Manhica HA. Children as next of kin to patients in hospitals- How many are they? Report 1 from the project ”Children as next of kin”- a survey (In Swedish). Kalmar: Nationellt Kompetenscentrum Anhöriga. 2013., 13Public Health Agency of Sweden, 2009 [Children in families with alchohol and narcotic abuse] Östersund Public Health Agency of Sweden. 2009.]. In comparison, the proportion of children from families without such experiences is approximately 12 percent [5Hansson M. Proper support to children in families with addicition and other major dificulties. Interim report of a government comission. Socialstyrelsen: In: Stockholm. 2014., 8Hjern A, Berg L, Rostila M, Vinnerljung B. Children as next of kin. How is school? Kalmar: In: Nationellt Kompetenscentrum Anhöriga. 2013., 12Hjern A, Manhica HA. Children as next of kin to patients in hospitals- How many are they? Report 1 from the project ”Children as next of kin”- a survey (In Swedish). Kalmar: Nationellt Kompetenscentrum Anhöriga. 2013.].

Historically, Sweden has boasted a world-renowned welfare state model in which the State cares for its citizens from the cradle to the grave [14Esping-Andersen G. A welfare state for the twenty-first century. In: Pierson C, Castles FG, Eds. The Welfare State Reader. Cambridge: Polity Publishing House 2006., 15Edlund J. Trust in the capability of the welfare state and general welfare state support: Sweden 1997-2002. Acta Sociologica 2006; 49: 395-417.
[http://dx.doi.org/10.1177/0001699306071681] ]. More recently, the Swedish model has undergone a substantial change. In the 1980s, the expansion of the Swedish welfare state ended, and in the 1990s, the economic crisis forced the government to reduce welfare services in order to decrease public spending. Although the service levels were restored in several areas during the 2000s, the public trust in welfare is no longer as steadfast as it once was [15Edlund J. Trust in the capability of the welfare state and general welfare state support: Sweden 1997-2002. Acta Sociologica 2006; 49: 395-417.
[http://dx.doi.org/10.1177/0001699306071681] , 16Larsson B, Letell M, Thörn H. Transformations of the Swedish welfare state from social engineering to governance?. New York, NY: Macmillan Palgrave 2012.
[http://dx.doi.org/10.1057/9780230363953] ].

Alongside Swedish health and social care services, non-profit organizations provide advice, information and support for children as next of kin [6National Board of Health and Welfare Sweden Children as next of kin Consequences and needs when parents have serious difficulties, or passes away Socialstyrelsen: Stockholm 2013. Available at: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/19114/2013-6-6.pdf]. Non-profit organizations are categorized as civil society [17Elson PR. Ties that bind? An empirical exploration of values in the voluntary sector: value importance, hierarchy and consensus in the in the independent hospices in the UK. In: Kumar S, Ed. Voluntary Sector Working Paper 2. London: London School of Economics 2006.], but their works are usually regulated by health care or social service laws [18Sjöbratt K. A welfare state for the twenty-first century In The Welfare State Reader. Cambridge: Polity Publishing House: 2010., 19Salamon LM, Hems LC, Chinnock K. Nonprofit sector: for what and for whom? Working papers of the Johns Hopkins comparative nonprofit sector project. Stockholm: Center for Civil Society Studies 2000; 37.]. Due to a political decision in 2008, a national agreement was established aimed at strengthening non-profit organizations’ independence and strengthening their role as a voice of public opinion.

The underlying thinking was to create conditions for increased diversity in civil society, where the non-profit organizations were assumed to have an important role to play, i.e., to increase the diversity and number of actors in health and social care services [18Sjöbratt K. A welfare state for the twenty-first century In The Welfare State Reader. Cambridge: Polity Publishing House: 2010.]. Non-profit organizations are often referred to as flexible, i.e., the organization individualizes the concrete needs of help-seeking persons, and they also take particular responsibility for marginalized people [19Salamon LM, Hems LC, Chinnock K. Nonprofit sector: for what and for whom? Working papers of the Johns Hopkins comparative nonprofit sector project. Stockholm: Center for Civil Society Studies 2000; 37., 20Blennberger E. Begrepp och modeller SOU 1993:83 Frivilligt socialt arbete Kartläggning och kunskapsöversikt Rapport av socialtjänstkommittén. Stockholm: Fritzes 1993.] emphasized closeness to the help-seeking individual, which in turn creates space for responsiveness [21Sherman AL. Faith in communities: a solid investment. Society 2003; 40: 19-26.
[http://dx.doi.org/10.1007/s12115-003-1048-2] , 22Austin MJ, Claassen J. Implementing evidence-based practice in human service organizations: preliminary lessons from the frontlines. J Evidence-Based Soc Work 2008; 5(1-2): 271-93.
[http://dx.doi.org/10.1300/J394v05n01_10] [PMID: 19064451] ] underscored the informal and family-centred culture that is representative of non-profit organizations in which attitudes, relationships and solidarity hold prominent places [23Nordfeldt M, Söderholm J. Voluntary organisations as contractors. Stockholm: Socialstyrelsen: 2002. what does this mean for users?].

Even though the situation for children as next of kin differs in many ways, their needs may be similar in several respects [6National Board of Health and Welfare Sweden Children as next of kin Consequences and needs when parents have serious difficulties, or passes away Socialstyrelsen: Stockholm 2013. Available at: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/19114/2013-6-6.pdf]. Children are at a significantly increased risk to be affected negatively if they are involved in incomprehensible situations in life, such as anxiety and unpredictable incidents [1Brent DA, Melhem NM, Masten AS, Porta G, Payne MW. Longitudinal effects of parental bereavement on adolescent developmental competence. J Clin Child Adolesc Psychol 2012; 41(6): 778-91.
[http://dx.doi.org/10.1080/15374416.2012.717871] [PMID: 23009724] , 24Lin F-G, Lin J-D, Hsieh Y-H, Chang C-Y. Quarrelsome family environment as an enhanced factor on child suicidal ideation. Res Dev Disabil 2014; 35(12): 3245-53.
[http://dx.doi.org/10.1016/j.ridd.2014.08.007] [PMID: 25178707] ]. The family economy, social relationships, communication and division of roles are additional examples of risk factors for the children affected [6National Board of Health and Welfare Sweden Children as next of kin Consequences and needs when parents have serious difficulties, or passes away Socialstyrelsen: Stockholm 2013. Available at: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/19114/2013-6-6.pdf]. Indeed, it has been well documented that children as next of kin are at increased risk for socio-economic problems, poor school performance and mental illness [8Hjern A, Berg L, Rostila M, Vinnerljung B. Children as next of kin. How is school? Kalmar: In: Nationellt Kompetenscentrum Anhöriga. 2013.]. Although there are a number of organizations that provide support to these children, there is little knowledge of the results of the support given. The developmental necessity as well as the need for research is described as comprehensive [25Axberg U. Identification and discussion paper. Göteborg: Fou Väst 2014. [Methods for systematic follow up of interventions aimed at children, adolecents and their families.]]. This study forms part of a larger commissioned study conducted by the Swedish Family Care Competence Centre (SFCCC), a centre of excellence in the field of family or informal care (http://www.anhoriga.se/) on behalf of the NBHWS, which focuses on systematic follow up of supportive activities targeted at children as next of kin. The focus of the present study was the work of non-profit organizations in this area.

The aim of this study was to explore how non-profit organizations work with supportive group activities for children as next of kin and how they follow up obtained results.

A descriptive study with a convenience sample [26Polit DF, Beck C. Nursing Research: Generating and Assessing Evidence for Nursing Practice. Philadelphia: Lippincott Williams and Wilkins 2012.] was conducted in 2015. This study was carried out with a sample of managers and group leaders in non-profit organizations in Sweden who provide help in the form of advice, support and/or information (e.g., physical, emotional or practical) for children as next of kin. The data were collected through individual and group interviews.

The participating organizations (n=10) were located in the middle and southern parts of Sweden. Most of the organizations offered their services within restricted geographical areas, whereas a few of them offered some of their services nationally through online chat or email facilities. Approximately half of the organizations have existed for 10 years or more. Four out of ten organizations were run by faith-based organizations. The organizations have employees ranging from two up to approximately ten people. The participants described that their hours of working with the group activities were after school, on weekends and holidays and all year around.

All of the organizations offered group activities (for example group talk, discussion, sport, play or cultural event), always led by two group leaders for each activity (in concordance with the Children’s Rights in Society), with predetermined themes in some way. The thematic areas focused on for instance guilt, shame, loneliness, the right to be a child, and children’s rights in society. The number of gatherings differed from usually ten up to twenty three, and the age of the target group differed between six and eighteen years of age. Most organizations invited the children to participate in repeated group activities.

Our results describe several different types of formulating supportive activities for children as next of kin. The results also reveal great differences in how different non-profit organizations work with follow ups.

Structure, predictability, order and tidiness were stated as important and meaningful in the supportive group activities for children as next of kin. At the same time, flexibility for each group of children and every new situation was also widely presented. Further, child focus, education, safety and trust were important; these factors were observed as the absolute main tasks and the reasons for being involved in that particular organization. Earlier studies have also shown that children’s knowledge and understanding regarding their family situation have a crucial impact on how they further are able to handle the situation [35Davey MP, Tubbs CY, Kissil K, Niño A. ‘We are survivors too’: African-American youths’ experiences of coping with parental breast cancer. Psychooncology 2011; 20(1): 77-87.
[http://dx.doi.org/10.1002/pon.1712] [PMID: 20198717] , 36Jakobsen IS, Christiansen E. Young people’s risk of suicide attempts in relation to parental death: a population-based register study. J Child Psychol Psychiatry 2011; 52(2): 176-83.
[http://dx.doi.org/10.1111/j.1469-7610.2010.02298.x] [PMID: 21039482] ]. In line with the present results, previous studies have emphasized the importance of the professional’s role in age-appropriate communication and integration with children as next of kin [2Wong M, Ratner J, Gladstone KA, Davtyan A, Koopman C. Children’s perceived social support after a parent is diagnosed with cancer. J Clin Psychol Med Settings 2010; 17(2): 77-86.
[http://dx.doi.org/10.1007/s10880-010-9187-2] [PMID: 20169402] , 37Turner J. Children’s and family needs of young women with advanced breast cancer: a review. Palliat Support Care 2004; 2(1): 55-64.
[http://dx.doi.org/10.1017/S1478951504040076] [PMID: 16594235] , 38Niemelä M, Väisänen L, Marshall C, Hakko H, Räsänen S. The experiences of mental health professionals using structured family-centered interventions to support children of cancer patients. Cancer Nurs 2010; 33(6): E18-27.
[http://dx.doi.org/10.1097/NCC.0b013e3181ddfcb5] [PMID: 20555258] ] highlighted the lack of supportive activities for children as next of kin and indicated that these activities need to be further developed and evaluated. In our study, the participants experienced important child developmental results from their supportive activities. However, they found it challenging to measure what they had achieved and also experienced difficulty in showing others in an appropriate and clear manner. The results further revealed that the participants found it difficult to generalize the answers from the follow ups, and they also illustrated great confusion regarding documentation and expressed concern about not retaining funding due to deficiencies in their presentation techniques. In some organisations follow ups were used first and foremost to continuously follow child development, develop their work and show others their group support results. In concordance with Söderlind [39Söderlind M. [Support for structured follow up] Socialhögskolan: Lunds universitet Turner J 2004 Children’s and family needs of young women with advanced breast cancer: a review Palliative and Supportive Care 2: 2012; 55-64.] participants described problems such as child stigmatization, lack of time, lack of meaning or relevance for the organizations’ goals when using questionnaires. On the other hand Glad et al. [40Glad J, Nybom J, Nyström S, Eskel-Grönberg M, Lindqvist P, Ljunggren S. [Systematic follow up Descriptions and example]. Stockholm.: Socialstyrelsen 2014.], reported that focus had shifted from costly follow ups to actually seeing and understanding the value of follow ups at both individual and group levels.

In line with Hansson [5Hansson M. Proper support to children in families with addicition and other major dificulties. Interim report of a government comission. Socialstyrelsen: In: Stockholm. 2014.], we found that systematic follow up on an individual and group level was carried out to a very limited extent. Often, there was a lack of systematic documentation of goals, content and results, which in turn could impact future quality and organization development. At the same time, the organizations showed a moral as well as ethical obligation to ensure that the supportive activities they offer children as next of kin are suitable and of good quality [39Söderlind M. [Support for structured follow up] Socialhögskolan: Lunds universitet Turner J 2004 Children’s and family needs of young women with advanced breast cancer: a review Palliative and Supportive Care 2: 2012; 55-64.].

Finally, follow up was described as very important for producing the best for children as next of kin and for developing their practical daily work. However, another main issue in accomplishing systematic follow up is to show the results to policy makers and possible contributors. We identified several different ways to manage and perform systematic follow ups in non-profit organizations. Nevertheless, the participants expressed a large and clear need for education on the subject of systematic follow up, and many participants asked for a simple, short and useful instrument to aid in follow up. During this study, we did not identify any validated instruments that matched these organizations' requests and needs.

We regard our study as useful for exploring how non-profit organizations work with and support children as next of kin and how they follow up the results of the support activities they provide. Twenty interviews with a total of 49 participants were deemed an adequate sample size for variation in organizations and participants [26Polit DF, Beck C. Nursing Research: Generating and Assessing Evidence for Nursing Practice. Philadelphia: Lippincott Williams and Wilkins 2012.]. With a convenience sample, the participants were self-selected into the study by responding directly to the authors. Those who chose to participate may well have been those most interested, negatively or positively, by their experience of systematic follow up and therefore with the most commitment, interest in and opinion on this topic. Although this may be the case, the open and reflective narratives (on average, 50 minutes) revealed valuable insights, about the organizations and their support for children as next of kin and how they work with follow up. However, we interviewed managers and group leaders separately, and the interviews were tape-recorded and transcribed verbatim, and the categories were checked against the original data. Moreover, representative citations confirmed the descriptions, which ensured the credibility of the results [26Polit DF, Beck C. Nursing Research: Generating and Assessing Evidence for Nursing Practice. Philadelphia: Lippincott Williams and Wilkins 2012.].

With this research project, the SFCCC began work to support non-profit organizations in developing the systematic follow up of supportive activities for children as next of kin. The organizations involved have a large burden of work and have limited resources for this work. Meanwhile, the children targeted by these organizations are increasing in number. Several other organizations are still in need of support, and staff working to give children support require additional knowledge about systematic follow up. Furthermore, there is still a large gap in the knowledge regarding the affected child’s position in systematic follow up. The children’s valuable opinions should be captured. Therefore, politicians and policy makers must be made aware that interventions for work with systematic follow up need to be accelerated. Indeed, we have only just scratched the surface, and much work remains. Together with different stakeholders, the SFCCC aims to create a meaningful, evidence-based systematic follow up method. Therefore, the current study must be followed by additional research and development work together with voluntary organizations.